jnhr journal

AND option

OR option

FACTORS INFLUENCING AUTONOMY OF NURSING HOME RESIDENTS WITH DEMENTIA: THE PERCEPTION OF FAMILY CAREGIVERS

 

L.J.M Hoek, J.C.M. van Haastregt, E. de Vries, R. Backhaus, J.P.H. Hamers, H. Verbeek

 

Department of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, Netherlands. Corresponding author:
Linda Hoek, Maastricht University Faculty of Health, Medicine and Life Sciences CAPHRI Care and Public Health Research Institute, Department of Health Services Research P.O. Box 616, 6200 MD Maastricht, The Netherlands, Telephone: 0031 43 3882193, Fax: 0031 43 38 84162, Email: l.hoek@maastrichtuniversity.nl

Jour Nursing Home Res 2019;5:33-39
Published online June 27, 2019, http://dx.doi.org/10.14283/jnhrs.2019.7

 


Abstract

Background: Being able to live the life you want to live within a nursing home might be challenging for residents with dementia, as they become dependent on others in achieving autonomy. However, little is known about which factors support or impede resident autonomy within nursing homes. Objectives: The purpose of this study was to gain insight into factors that support or impede autonomy for nursing home residents with dementia, from the perspective of their family caregivers. Design: A qualitative study was conducted. Setting: Five psychogeriatric nursing home wards within three care organizations in the Netherlands. Participants: 30 family caregivers. Measurements: Semi-structured interviews were held and a qualitative thematic approach was used. Findings: This study identified several factors that seemed to influence resident autonomy within six themes: activities; personal approach; visits from family and friends; being part of a group; physical environment; and organization of care. Within these themes, factors were mentioned that could either support or impede resident autonomy. For example, being socially engaged with family and fellow residents and participation in meaningful activities were supporting factors. The inability to go outside when wished or having inadequate private space were impeding factors. Overall, daily life was mostly organized from a communal and task-centered perspective instead of adaptation to individual preferences. Conclusions: The current study suggests that in order to improve the support of resident autonomy, nursing homes should focus on flexibility in providing care, finding ways to offer meaningful activities, and stimulating resident’s social environment to continue social traditions.

Key words: Autonomy, nursing homes, dementia, family caregivers.


 

Background and objective

There has been an ongoing culture change within nursing homes towards providing person-centered care that supports resident autonomy. This care philosophy emphasizes care provision that is tailored to residents’ needs and wishes (1). Understanding the person, empowerment in decision-making and relationships in care are important concepts within person centered-care (2). Nonetheless, providing person-centered care might be challenging, especially when providing care to nursing home residents with dementia, as these residents often encounter difficulties expressing their needs and wishes and, therefore, are dependent on others (3). The nursing home sector recognizes the importance of making a shift towards person-centered care that supports autonomy as much as possible, yet, there seems to be a gap between recognizing the value of providing person-centered care, and clinical practice (4-5).
Nursing home residents with dementia are often highly dependent on their environment in achieving as much autonomy as possible. Nursing staff has an important role in supporting residents’ choices over daily life (6). For instance, residents need other people to support them to make decisions regarding daily routines and care preferences. A general belief is that people’s autonomy is restricted if they become dependent on others (7). This view, however, does not consider the fact that all humans are interdependent, and devalues people with disabilities who rely on the help of others. In light of a person-centered point of view, relational autonomy is presently considered as a more appropriate approach of conceptualizing autonomy for residents within long-term care settings (7). This approach draws on the ideas of person-centered care, in which people’s identities are developed and maintained within social relations, and a person can still be a free, autonomous individual within personal relations and mutual dependencies (8). Therefore, it is important that the environment addresses the need for autonomy for residents, regardless of living in a nursing home and needing help from others.
Together with staff, family caregivers can support resident autonomy. Feeling at home and being able to live the life you want might be challenging to individuals after moving into a nursing home (9). Limitations in privacy, the balance between feeling independent while being dependent on others due to the consequences of having dementia, and sharing a living space with other residents, challenge the sense of autonomy in daily life and feeling at home (10). Therefore, family involvement is of major importance, as family can contribute to care by sharing biographical knowledge of the resident with staff as well as residents’ preferences in everyday life (11). Moreover, they can provide instrumental and emotional support, advocate for their relatives and indicate what might be valuable things in (daily) life and meaningful activities for the resident (12). Therefore, the family caregiver’s role, requires to be better integrated in the current life of nursing home residents in order to be able to help them to live the life they want to live within the nursing home.
In many nursing homes, however, it is difficult for family caregivers to support resident autonomy and stay actively involved. Although there is growing attention for providing person-centered care, nursing homes often still have an institutional character and focus on the provision of task-centered care, in which residents’ daily lives are often highly determined by organizational rules and routines (13). Moreover, supporting resident autonomy has not always been prioritized within long-term care (6). Efforts to provide better person-centered care were made when developing small-scale living facilities that focus on normalization of daily life and meaningful activities within a joint small household. Previous research regarding these small-scale living facilities, indicates that individual needs and wishes were better met when nurses actively sought residents’ strengths and capacities (14). In addition, residents’ interest was stimulated when engaged in daily household activities, which increases the sense of home and the ability to live the life you want within a nursing home (15).
Little is known about which factors support or impede autonomy of nursing home residents with dementia. Therefore, this study explores factors that influence resident autonomy, which is operationalized as the ability to live the life you want to live, as experienced by family caregivers.

 

Methods

For this study, a qualitative research design was chosen (16). Semi-structured interviews were held to assess family caregivers’ opinions on the extent to which they perceive that their loved ones can live the life they want within the nursing home, and which factors support or impede this.

Setting and Participants

Participants were recruited from three different care organizations in the Netherlands, including three small-scale and two large-scale psychogeriatric nursing home wards. In the Netherlands, traditional, large-scale nursing home wards are characterized by providing care for a large group of residents per ward, where daily life is mostly determined by organizational rules and routines. In small-scale wards, residents live within a joint household with, generally, six to eight residents. Here, care aims to be provided within a fixed team and a homelike environment, and activities are integrated in daily life. The selected wards provided care for residents with moderate to severe cognitive impairment. Family caregivers were eligible for this study if they were involved in the care for a resident with dementia living at the included wards. Family caregivers who functioned as the main contact person, and were responsible for making decisions on behalf of the resident, were invited to participate in the study (N=58).

Procedure

All participants were informed about the study in writing and received a consent form. Family caregivers who were willing to participate returned the consent form directly to the researchers and were called and asked when the interview could take place. Participants were interviewed individually; however, if the participant preferred that a second family caregiver was present, this person was allowed to join. Interviews were held at a location of the participant’s choice. Participants were interviewed by a member of the research team between February and October 2017. Before starting the interview, participants were verbally debriefed about the study, informed about how the data would be processed, and reassured that any data would be treated confidentially.

Data collection

Data were collected by semi-structured interviews (16). In addition, the following background characteristics of participants were collected: age; gender; relationship to the resident (spouse, child, other); and how frequent they visited the nursing home. An interview guide, including a topic list, was developed to standardize the interview procedure. Participants were asked about the extent to which their relative is able to live his or her life within the nursing home. Table 1 presents an overview of the topic list and examples of questions. When needed, the interviewer prompted participants to elaborate on factors that support having choice in valuable moments in the resident’s daily life and things the resident appreciates and enjoys while living in a nursing home. Three researchers collected data (LH, EdV & RB). Interviews were audio-recorded and transcribed verbatim.

Table 1
Topics and example questions of the interview

 

Data analysis

A qualitative thematic approach was used to analyze the data (16). Analyst triangulation was used in order to increase reliability of the data analyses (17). First, to acquire an overall sense of the data and become familiar with the text, researcher LH read all transcripts. Initially, three transcripts were coded (LH) and the coding was discussed in detail with a second researcher (LH & HV). Relevant text fragments were identified, which were meaningful parts of the text, containing words and phrases. Fragments were compared among each other to find similarities and differences, assigned to a similar category and given a code that corresponds to and contains the meaning of the fragment. After that, all remaining transcripts were analyzed independently by two researchers (LH & EdV), using qualitative data analysis software MAXQDA (18), and interpretations were compared as a form of cross-checking. In the case of disagreement, the most suitable interpretation was chosen, e.g. the interpretation which best signifies the meaning of what was expressed. A code scheme was developed, in which connections between categories were made, and codes were integrated and refined. Relationships and connections between codes were made in order to develop central themes that derived from the qualitative data. All codes were grouped and collectively categorized and main themes were identified. Weekly meetings were held between the researchers (LH, EdV & HV) during the analysis to discuss coding of the transcripts and interpretation of the data. After coding all transcripts, codes and themes were discussed within the whole research team for general interpretation of the data.

Ethical procedure

This study had been approved by the Ethics Committee of Zuyderland-Zuyd (No. 16-N-233). Participants submitted informed consent after receiving information about the purpose and procedure of the study. Participants could withdraw their voluntary participation at any moment during the study. Confidentiality of the interviews was guaranteed.

Findings

In total, 30 out of 58 family caregivers agreed to be interviewed. Seventeen caregivers did not return the consent form and 11 refused to participate. Participant characteristics are described in Table 2. Of the participants, the majority were daughters who visited their relatives at least once a week.

Table 2
Participant characteristics

 

Most participants found it difficult to reflect on to what extent their relative is able to live the life he or she wants to live. They expressed difficulties determining whether their relative with dementia had the potential to carry out autonomy: most relatives were not able to express actively and verbally their wishes and needs. Participants stated that the cognitive decline caused loss of previous interests and the cognitive and/or verbal inability to express interests. Consequently, participants were asked to elaborate on specific situations that used to be important and meaningful for their relative at home, and whether these are still important and possible while living at the nursing home. Based on this, information on resident autonomy was deduced and reflected within six themes (Table 3) which are described in more detail below.

Table 3
Main themes

 

Activities

The theme ‘activities’ concerns resident engagement in meaningful activities and stimulating their interest in activities. Participants indicated that autonomy was supported when residents were engaged in (meaningful) activities that suited their interest and when care professionals stimulated the interest of residents in participating in certain activities. The majority of participants indicated that care professionals could better address needs and adjust activities to residents’ cognitive abilities when they organized activities at an individual level, or in a small group of residents with similar interests. In addition, most participants mentioned that activities were not tailored to residents’ individual preferences. Activities were mainly organized by staff from a logistic point of view, instead of these being adapted to residents’ personal preferences. Furthermore, for those residents whose interests matched the organized group activities, family caregivers felt that autonomy was supported, whereas activities adjusted to residents’ personal preferences were rarely centrally organized.
“Nothing happens at the ward. There are no activities for my father. He will not join activities such as arranging flowers, and he doesn’t need his nails done. There is nothing to do for the gentlemen, I don’t see it” [Daughter,56]
Moreover, some participants mentioned that participation in activities in a familiar environment, such as the ward’s living room, better supported autonomy, compared to organized activities in a communal room outside of the ward.

Personal approach

The theme “personal approach” pertains to staff providing care that suited residents’ preferences and giving personal attention to the residents throughout the day. Correspondingly, a personal approach was the ability to choose a specific ward before admission, maintaining residents’ daily routines, being offered preferred food and taking care of the physical appearance as residents would have wished. Participants indicated that an important factor in achieving resident autonomy was the nursing staff making an effort to get to know the resident, by asking both resident and their family caregiver about preferences regarding activities and life history. These aspects were mainly discussed during the intake at admission but rarely at another point in time. Some participants were asked about how they felt about an update conversation during the year and responded positively. According to them, this would contribute to support resident autonomy. One participant responded:
“At a certain point in time she started singing and they asked me ‘do you think it’s ok if she joined the singing group?’ That’s something I’ve noticed, they try things like ‘wouldn’t this or that be nice for your mother to do?’” [daughter,63]
Only a few participants spontaneously indicated that their relative had a close relationship with (a member of) the nursing staff. These participants were more satisfied with the support of the autonomy of their relative whenever their relative received care from these nursing staff members.

Visits from family and friends

Continuation of family traditions and meaningful social encounters were considered important by the family caregivers in supporting autonomy. All participants reported that residents were able to continue social activities they used to do when living at home, when they were be able to welcome family and friends at any time. One contributing factor that was mentioned was nursing staff making participants feel welcome whenever they visited, as well as the presence of nursing staff on the ward during visits.
“You really feel at ease, you feel like you’re being invited. As if you could come over whenever you want” [Daughter,56]
Nonetheless, most of the participants were not able to visit their relative as much as they wished, due to work or travel distance. Keeping in contact by phone was mentioned as helpful for the resident to stay in touch with relatives. Residents, however, did not receive sufficient help with using the phone or with having a private area where they could make a call, according to some participants.
“For me, I call a lot less now, otherwise I would have called on a daily basis, I called her every day. […] And when I call now, it is more complicated because they have to transfer your call and then something goes wrong. Also, she sits in the living room, where the TV is turned on and people are chatting” [Daugther,58]

Being part of a group

Participants’ opinions differed as to whether living in a nursing home, and being a part of a group of residents or joint household, either supported or impeded the autonomy. Some participants felt that living in a group could positively support their relative’s interest in socially connecting to others, e.g., other residents and their family members.
“‘Your mother is always cheery and peppy, she talks to everybody’, staff say. We had a family with five children and other people also came over a lot, a ‘Leave it to Beaver’ household. So, she’s always used to having people around. The only concern would be that my mother could get lonely, but I don’t feel like that’s the case. She sits and talks with everybody” [Daughter,57]
On the other hand, a small number of participants viewed that living in a group was sometimes too busy for their relatives and that they preferred spending more time on their own during the day. Therefore, it was considered important for these residents to have a place where they could seclude themselves from the group when they wished.
“It is hard for people to adjust to five other people you don’t even know. And they all have a completely different background, they didn’t choose them themselves. They are not friends or acquaintances or whatever” [Daughter,59]
Tailoring daily routines to residents’ preferences played a major role in achieving autonomy; for example, getting up when they wanted to or having meals at a preferred time. Some participants mentioned that autonomy was currently restricted, as residents’ daily life was oriented toward what fits the group instead of the individual.
“My mother doesn’t like the music that’s mostly played on the ward. She likes music we played at home back in the day. Now, she sings along with the music on the ward, only because she knows all the songs now by repeating and repeating” [Daughter,56]

Physical environment

Being able to adjust the environment into a place that feels like home and experience the freedom to move within and outside the ward as much as residents wish, contributed to resident autonomy. In all cases, participants mentioned that being able to bring personal belongings and valuable belongings, such as furniture, carpets, photographs, clothes and toiletries, contributed to living in a familiar and homely environment.
“We asked her before: ‘by the time you would have to live in a smaller place, what would you bring?’ […]. Her bedclothes, she even took her own mattress and bedclothes, all those kinds of things. The most important thing, she took my father with her, the urn in her room, she brought things that were extremely important to her” [Daughter,53]
It was suggested by participants that the ability to walk around the ward freely, without restrictions, addressed the need for physical movement and freedom within the ward. This contributed to autonomy as residents can freely choose to go wherever they want and residents do not feel restricted within their living environment. This was also the case when nursing staff accompanied residents for a walk within or outside the nursing home. In particular, for those residents who are wheelchair-dependent, some participants viewed that regular walks would help them be exposed to a different environment during the day. In addition, for the majority of participants, help from nursing staff and family caregivers, and a freely, easily and safely accessible garden or outside space contributed to the feeling of having autonomy.
Some participants indicated that sufficient access to private areas, belonging to the resident, improved resident autonomy. For example, if residents had access to their wardrobe they would experience more freedom, according to participants, even though this might cause inconvenience for nursing staff. The ability to have a private space to be alone outside of the bedroom, as well as a private space for residents to welcome family, are also factors that contributed to autonomy, indicated by the participants:
“He needs his own space, right. And of course he has his own room but he is not capable of finding his own room and turning the key to open the door. So that is not an option” [Son,58]
A small number of participants mentioned that their relative considered the nursing home as their home. They pointed out that their relative felt satisfied and at ease, and visibly enjoyed daily life at the nursing home. For a few other residents, for example, the ward was a familiar and safe environment and felt like their own home.

Organization of care

Within the organization of nursing home care, several factors concerning nursing staff and working routines promoted resident autonomy according to the participants. Participants were unanimous in the view that deploying a fixed team on a ward enabled nurses and residents to know each other better. This would allow staff to develop a personal relationship with residents, and therefore enable them to approach residents in a more personal way, better addressing individual needs and preferences.
“Well, what I think is really important and keep on seeing, is of course linked to staff changes. My mom, she wouldn’t accept the way she’s being taken care of. She can’t express it anymore, but it’s not the way she would want it. She would get angry, so to speak. Right from the beginning, I took a picture of her and I put that photograph over there, just to give an example of ‘this is my mom, this is how she felt human’. And some of the staff pay attention to this and others completely don’t […]. And if I see her and how her hair is done, it’s greasy and she’s not wearing any make-up. My mom wouldn’t open the door to anyone like this back home” [Daughter,53]
“Well, a fixed team. Yes, it would be nice for mom if she had a steady, identifiable person instead of all these new faces. […] Yes, someone who knows what she likes and prefers” [Daughter,53]
Moreover, participants indicated that when staff had more freedom to work without a predetermined list of care tasks, resident autonomy could be better supported. For example, they would be able to effectively address residents’ daily needs, such as timely toilet use, preferred physical appearance and meaningful activities. Furthermore, if nurses had more time for tasks other than physical care, residents could better live the life they want − for example, going outside with residents when residents wanted to, being able to support residents with keeping their pet and participate in daily activities.
“Someone takes care of the medicine, the other one starts with porridge […]. It’s such a routine, right? Someone does this, the other one does that […]. It’s ‘go, go, go, feeding, and done’ and then they clean up, it’s all that routine, it’s like ‘I have to be ready in time because my shift ends at 7 o’clock’. I think that’s what it is” [Daughter,59]
Furthermore, in order to increase resident autonomy, some participants indicated that changing staff working hours could contribute to addressing residents’ needs regarding daily routines and habits. For example, residents should be able to go to bed when they want and stay up late when visiting their children’s home without being dependent on staff working hours during the evening.
“For example, sometime last week, a staff member was in one of the living rooms and took all the residents to the other living room. Like she (staff member) said, she’d previously already done something with games: ‘for me to do that again, I feel like I’m not doing anything usefull’. She was really thinking about helping her colleagues with all those residents who had to be put to bed. That’s a typical example of nurses who might think ‘oh, I have to put ten people to bed’ or ‘I have to reach my quota for today’’ [Daughter,60]

 

Discussion

The current study identified six themes that influenced autonomy of nursing home residents with dementia: 1) activities; 2) personal approach; 3) visits from family and friends; 4) being part of a group; 5) physical environment; and 6) organization of care. Within these themes, factors were mentioned that could either support or impede resident autonomy. The most important factors that were considered by family caregivers to influence resident autonomy were: 1) residents being involved in individual activities that suited their interest, while activities that were organized from a communal and logistic perspective impeded autonomy; 2) providing a personal approach by getting to know the resident positively influenced resident autonomy; 3) autonomy was supported when family and friends were be able to visit, though private spaces for family to continue family traditions were absent; 4) being able to socially engage with fellow residents had a positive influence, whereas, on the other hand, daily life with fellow residents was mostly determined by what fits the group instead of the individual; 5) creating a homely environment supported resident autonomy, while limited freedom of movement was considered impeding; 6) having a fixed team supported autonomy while, nursing staff having fixed routines regarding moments of care, impeded resident autonomy.
Some methodological limitations need to be considered. All first-contact persons of the residents from the selected wards were approached, which led to an inclusion of a high number of daughters. Consequently, experiences from spouses have been underrepresented in this study. This could have led to somewhat other findings as spouses may have a different, closer relationship with a resident (19). Adult children might grow into a different relationship, as they distance themselves from the parent when taking on a caring role (20). Accordingly, they may take over the decision process as the hierarchy within the child-adult relationship changes (21). Nonetheless, the sample is likely to be representative regarding gender, as women often take on the role of family caregiver (22). We used a descriptive generic research design, and our sampling procedure did not primarily focus on attaining data saturation when recruiting participants. Instead, we mainly focused on recruiting participants to capture a variety of experiences with resident autonomy from different wards, as previous studies suggested that the nursing home environment influenced family caregivers’ perception on the care process (23), and autonomy in daily life in these homes may differ. Furthermore, participants had difficulties in determining whether their relative was able to live the life he or she wants. Other research methods, for example photo elicitation (24), which is an interview method that uses visual images to elicit comments, may have been able to stimulate more response.
Our findings suggest that when residents are being cared for according to the nursing staff’s fixed routines regarding moments of care, and staff’s working shifts, this impedes resident autonomy. This is an impeding factor to resident autonomy as this task-centered focus gives staff little opportunity to recognize and respond to the daily needs and wishes of the resident. These findings are in accordance with recent studies indicating that nursing staff are often too much involved in taking over caring tasks, and therefore residents are poorly stimulated to make their own choices (25). In order to provide care that incorporates residents’ needs and wishes, care flexibility is essential (26). More research is needed to explore the relationship between the identified factors and cognitive status, duration of stay, and other background characteristics. Participants acknowledge that autonomy could be better supported when staff have more freedom to work without a predetermined list of care tasks. Therefore, it is important for staff to view the nursing home as a place to live in rather than a place to be cared for, in order to address residents’ needs and wishes (27).
Another finding was that family caregivers perceived that resident autonomy was impeded when activities were mainly organized from a logistic and communal principle. Therefore, it was perceived as important that the staff are able to spontaneously organize meaningful activities, in an individual or small setting. This would support resident autonomy as staff would be able to directly address residents’ needs and wishes and activities, and could therefore be more meaningful to the resident. Our findings suggest that going outside is, amongst others, a meaningful activity for many residents. When staff are able to spontaneously arrange this activity, this would contribute to activities that are more meaningful and therefore, residents are better supported in living the life they want. This also accords with earlier observations, which showed that being able to go outside was mentioned as a meaningful activity and, therefore, is related to a higher quality of life for nursing home residents with dementia (28). In addition, our findings indicate that in order to enhance the feeling of having the choice to go wherever you want, the physical environment should be developed to facilitate the possibility for residents to independently go outside into a safe environment.
As is well known, it is exceedingly important for nursing home residents with dementia to keep a social connection to their family and friends. The current study found that while all participants were able to visit their loved one anytime during the day, there was a need to have a private space or suitable area to continue social traditions, such as celebrating birthdays together with family, or just being together amongst family, away from the communal group. In addition, besides being socially involved in the residents’ life, it is also important for family to be involved in the care of their relative to support resident autonomy (29). In order to do so, they have to feel at home and welcome, and be able to take part in decision-making about the resident’s care equally, instead of solely being a visitor (30). Nonetheless, communication between family and staff appears to remain challenging, causing shortcomings in discussing roles (31). This can hinder the support of resident autonomy. Moreover, as participants repeatedly mentioned frequent changes in care staff, family caregivers, nursing staff and residents might face difficulties in developing a strong relationship, which is needed to support resident autonomy. Therefore, this study indicates that low staff turnover is important for residents and family caregivers to allow them to adjust to the nursing home and develop a personal connection with nursing staff. In that way, knowledge of residents’ life preferences can mutually be transferred, as a basis to create a solid partnership in supporting resident autonomy (28, 32).
Findings of this study indicate that several factors might improve the support of resident autonomy. Improvements should focus on good implementation of person-centered care by creating possibilities to better tailor care to residents’ preferences regarding daily routines, social and meaningful activities. Realizing improvements regarding supporting resident autonomy might be a challenge, as providing an opportunity to make own choices and, consequently, being able to live the life residents want, has not been a priority in current nursing home care (6). Nonetheless, the most important improvements that can be made concern the care professionals. They need to be given the opportunity to know and understand the residents in order to provide care and activities that suit the residents’ interests. Care professionals should be able to provide care that is based on residents’ personal preferences and support the life residents want to live. In addition, creating a familiar, homely environment and enabling residents to go outside whenever they want should be facilitated to better support autonomy. Lastly, the physical environment should encourage residents and family caregivers to continue social activities in private.
In conclusion, the current study suggests that there are still numerous possibilities to improve the support of resident autonomy. Enabling flexibility in providing care, finding ways to offer activities that are meaningful to residents, and stimulating resident’s social environment to continue social traditions are of major importance in supporting resident autonomy. Based on the findings of this study, efforts should be made to improve the support of resident autonomy within nursing home care.

 

Acknowledgements: The care organizations that participated in this study were part of the Living Living Lab in Ageing and Long-Term Care. This is a formal multidisciplinary network consisting of Maastricht University, seven large long-term care organizations, Gilde Intermediate Vocational Training Institute and Zuyd University of Applied Sciences, all located in the southern part of the Netherlands. The authors would like to thank all participating family caregivers and care organizations for their valuable contributions to this study.

Funding: This work was supported by the Living Lab in Ageing and Long-Term Care. They had no role in the design and conduct of the study; in the collection, analysis, and interpretation of data; in the preparation of the manuscript; or in the review or approval of the manuscript.

Conflict of interest: The authors declare no conflict of interest.

Ethical standard: This study had been approved by the Ethics Committee of Zuyderland-Zuyd (No. 16-N-233).

 

References

1.    Kitwood TM. Dementia reconsidered: the person comes first. 1997. Open University Press, London
2.    Wilberforce M, Challis D, Davies L, Kelley MP, Roberts C, Loynes N. Person-centredness in the care of older adults: a systematic review of questionnaire-based scales and their measurement properties. BMC Geriatrics 2016;16:63
3.    Buron B. Levels of personhood: a model for dementia care. Geriatric Nursing 2008;29(5)324-332
4.    White-Chu EF, Graves WJ, Godfrey SM, Bonner S, Sloane P. Beyond the medical model: the culture change revolution in long-term care. J Am Med Dir Assoc 2009;10:370-378
5.    Callahan CM, Bateman DR, Wang S, Boustani MA. State of science: bridging the science−practice gap in aging, dementia and mental health. J Am Geriatr Soc 2018;66:28-35
6.    Boyle G. Autonomy in long-term care: a need, a right or a luxury? Disability and Society 2008;23(4):299-310
7.    Sherwin S, Winsby M. A relational perspective on autonomy for older adults residing in nursing homes. Health Expectations 2010;14(2):182-190
8.    Christman J. Relational autonomy, liberal individualism, and the social constitution of selves. Philosophical Studies 2004;117(1):143-164
9.    Hammer RM. The lived experience of being at home. A phenomenological investigation. J Gerontol Nurs 1999;25(11):10-18
10.    de Veer AJ, Kerkstra A. Feeling at home in nursing homes. J Adv Nurs 2001;35(3):427-434
11.    McCormack B, McCance TV. Development of a framework for person-centred nursing. J Adv Nurs 2006;56(5):472-479
12.    Port CL, Zimmerman C, Williams CS, Dobbs D, Preisser JS, Williams SW. Families filling the gap: comparing family involvement for assisted living and nursing home residents with dementia. The Gerontologist 2005;45:87-95
13.    Verbeek H, van Rossum E, Zwakhalen SMG, Ambergen T, Kempen GIJM, Hamers JPH. The effects of small-scale, homelike facilities for older people with dementia on residents, family caregivers and staff: design of a longitudinal, quasi-experimental study. BMC Geriatr. 2009;9(3):252-264
14.    Verbeek H, Zwakhalen SMG, van Rossum E, Kempen GIJM, Hamers JPH. Small-scale, homelike facilities in dementia care: a process evaluation into the experiences of family caregivers and nursing staff. Int J Nurs Stud 2012;49;21-29
15.    de Boer B, Hamers JPH, Zwakhalen S, Tan F, Beerens H, Verbeek H. Green care farms as innovative nursing homes, promoting activities and social interaction for people with dementia. J Am Med Dir Assoc 2017;18(1):40-46
16.    Moser A, Korstjens I. Series: practical guidance to qualitative research. Part 3: sampling, data collection and analysis. European Journal of General Practice 2017;23(1)
17.    Patton MQ. Enhancing the quality and credibility of qualitative analysis. Health Serv Res 1999;34(5):1189-1209
18.    MAXQDA. Software for qualitative data analysis, VERBI Software – Consult – Sozialforschung GmbH, Berlin, Germany. 2018
19.    Pot AM, Deeg DJH, Knipscheer CPM. Institutionalization of demented elderly: the role of caregiver characteristics. Int J Geriatr Psychiatry 2001;16:273-280.doi:10.1002/gps.331
20.    Van Bruggen, S., Bode, C., Ten Klooster, P. M., & Lenferink, L. I. (2015). Reliability and Validity of the Dutch Translation of the Filial Maturity Measure in Informal Caregivers. J Adult Dev, 22(3), 138-147. doi:10.1007/s10804-015-9207-4
21.    Feinberg, L. F., & Whitlatch, C. J. (2002). Decision-making for persons with cognitive impairment and their family caregivers. Am J Alzheimers Dis Other Demen, 17(4), 237-244. doi:10.1177/153331750201700406
22.    Holmgren J, Emami A, Eriksson LE, Eriksson H. Being perceived as a ‘visitor’ in the nursing staff’s working arena – the involvement of relatives in daily caring activities in nursing homes in an urban community in Sweden. Scand J Caring Sci 2013;27:677-685
23.    De Boer B, Living at a green care farm – an innovative alternative for regular care in nursing homes for people with dementia. 2017 Doctoral dissertation. Maastricht University, Maastricht.
24.    Hansen-Ketchum P, Myrick F. Photo-methods for qualitative research in nursing: an ontological and epistemological perspective. Nurs Philoso 2008;9(3):205-213
25.    den Ouden M, Kuk NO, Zwakhalen SMG, Bleijlevens MHC, Meijers JMM, Hamers JPH. The role of nursing staff in the activities of daily living of nursing home residents. Geriatric Nursing 2017;38(3):225-230
26.    Cohens-Mansfield J, Bester A. Flexibility as a management principle in dementia care: the Adards example. Gerontologist 2006;46:540-544
27.    Malidou AA, Cummings GG, Schalm C, Estabrook CA. Health care aides use of time in a residential long-term care unit: a time and motion study. Int J Nurs Stud 2013;50(9):1229-1239
28.    Beerens HC, De Boer B, Zwakhalen SMG, Tan FES, Ruwaard D, Hamers JPH, Verbeek H. The association between aspects of daily life and quality of life of people with dementia living in long-term care facilities: a momentary assessment study. Int Psychogeriatr 2016;28(8):1323-1331.
29.    Boumans J, van Boekel LC, Baan CA, Luijkx KG. How can autonomy be maintained and informal care improved for people with dementia living in residential care facilities: a systematic literature review. Gerontologist 2018;gny096. doi:10.1093/geront/gny096
30.    Givens JL, Lopez RP, Mazor KM, Mitchell SL. Sources of stress for family members of nursing home residents with advanced dementia. Alzheimer Dis Assoc Disord 2011;26(3):254-259
31.    Bauer M, Fetherstonhaugh D, Tarzia L, Chenco C. Staff–family relationships in residential aged care facilities: the views of residents’ family members and care staff. J Appl Gerontol 2014;33(5):564-585
32.    Wilson CB, Davies S, Nolan M. Developing personal relationships in care homes: realising the contributions of staff, residents and family members. Ageing & Society 2009;29(7):1041-1063

RISE IN ASSISTED LIVING LAWSUITS INDICATES THE NEED FOR A CONSUMER-CENTERED MODEL OF CARE

 

M. Fetterolf1, P. Kao2, N. Castle1

 

1. University of Pittsburgh, USA; 2. Department of Anthropology, Harvard University, USA. Corresponding author: Philip Kao, Harvard University, USA, philip_kao@fas.harvard.edu

Jour Nursing Home Res 2019;5:24-26
Published online June 5, 2019, http://dx.doi.org/10.14283/jnhrs.2019.5

 


Abstract

Across the United States, 60% of Assisted Living administrators noticed an increase in legal claims; meanwhile nearly 75% noticed an increase in lawsuits and 71% noticed an increase in settlements. This article asks whether or not the rise in legal pressure may be attributed to a higher proportion of residents with moderate to severe cognitive impairment in Assisted Living.  More broadly, the findings indicate that there is a lack of consumer choice and solutions for the elderly in need of long-term services. As a short-term option to mitigate the rise in legal pressure, long-term facilities could explore ways to work with residents in defining various thresholds of care that are safe, sustainable and economically sound whilst preserving certain aspects of residents’ desired lifestyles. Over the long term, the United States needs to develop innovative options for the provision of long-term care services with a focus on redesigning care for older adults with their input. The consequences of such a positive change are examined.

Key words: Assisted Living, Nursing Homes, Consumer-Centered Healthcare, Lawsuits, Dementia.


 

Introduction

In the US, some attorneys are finding that after years of targeting Nursing Homes, law firms are shifting their focus toward Assisted Living. Some firms are using a “nursing home lawsuit playbook” to litigate against these expanding facilities (1).  As the number of older adults in Assisted Living with moderate to severe cognitive impairment increases, facility administrators face severe challenges to care for the complex needs of residents while maintaining the values which Assisted Living was founded upon, namely: care, dignity, autonomy, and privacy.
In February 2017, the authors sent out 225 research questionnaires, by postal and electronic mail, to Assisted Living administrators in ten states across the US.  Of the 225 facilities, 85% percent of them listed having “memory care units” on their websites. Our research surveys were structured to capture opinion-based, qualitative data from administrators regarding their perceptions of the number of claims, lawsuits, and settlements trending over the past five years. The methodology for collecting responses from the various facilities across the country was based on geographic spread, and the presence of a “memory care unit” in each respective Assisted Living Facility (ALF). Additionally, the majority of the facilities we targeted were medium-sized. The surveys solicited information about the types of lawsuits, prevalence of dementia in their facility, and the effects that legal pressure might have had on notions of resident choice, dignity, privacy, and safety (2). This study received 58 responses from nine states with a total 25.7% response rate overall (3).

 

Results

Administrators were asked to appraise the number of claims, lawsuits, and settlements over the last five years. Almost 60% of administrators noticed an increase in claims; nearly 75% of the respondents noticed an increase in lawsuits; and 71% noticed an increase in settlements.

Figure 1

 

Additionally, when asked to respond to the statement “Litigation is forcing ALFs to become more like nursing homes in terms of regulation”; 68% of administrators responded with somewhat or strong agreement; 22% neither agreed or disagreed; and 10% showed some form of disagreement.

 

Consumer Driven Assisted Living

The Assisted Living industry has become a target for litigation due to large variation with respect to facility size, admission policies, level of complex care needs (e.g. mobility support, eating/medication assistance) and dementia care capability (4). Growth in the Assisted Living sector across the US has been attributed to its market model of care promoting resident independence, autonomy, privacy, and dignity (5), as well as serving the primary provider for residential care for older adults with dementia (6).
As a point of clarification, ALFs offer residents assistance with the activities of daily living in a residential setting.  In contrast, skilled nursing facilities (SNF) are places that can be temporary or longer term stays for people who need constant care and medical treatment from a registered nurse 24/7. Historically, the process of identifying a suitable home for a loved one has not been a consumer-driven process. Put simply, if an older adult can no longer live independently and does not require the level of support offered in skilled nursing, they are left to choose among the current supply of assisted living (or similar) facilities. In terms of care needs, this cohort accounts for the largest proportion of older adults needing supportive services. A combination of online research and touring of ALFs close to one’s current residence is the basis for a decision.  There is no shortage of checklists and online resources to select a home for an older adult (most sites appeal to the son or daughter of a loved one as opposed to the actual resident). Given that 60% of assisted living residents only relocate within a 10-mile radius from their home, and 80% relocate within a 25-mile radius, this is a very narrow range to find a suitable home (7).  As such, one is likely to be subject to the geographical definitions of quality and amenity; given that although the industry has rapidly expanded since its inception in the late 1970s, there has been no establishment of a threshold at or below which an ALF can provide adequate care without comprising resources and safety.
The establishment of a “threshold of care” should be an agreement between the resident and the facility in question. The facility shouldering responsibility should refer any individuals for whom they can no longer care for adequately and safely to more appropriate care settings such as SNFs. Residents with severe dementia are broadly defined as those who need non-stop assistance with daily activities and personal care. They lose awareness of recent experiences as well as of their surroundings; they also experience changes in basic physical abilities (including the ability to walk, sit, or even swallow sometimes). Furthermore, they have increasing difficulty communicating, and become vulnerable to infections, especially pneumonia (8).   One memory care unit administrator from a Pennsylvania ALF said that “The population that used to be in nursing homes is now in Assisted Living”, which suggests that the industry is reacting to increasing demand, market competition, and a changing population base, instead of responding to the way they can provide services, especially with respect to medium-severe dementia. In fact, the ‘patient’ populations in both ALFs and SNFs have changed because of particular social-economic factors, but the fact remains that ALFs have to figure out how to balance when dementia related deficits have reached a tipping point.
In 2014, seven out of ten residents in ALFs exhibited some form of cognitive impairment. More specifically, 29% of residents had mild impairment; 23% have moderate impairment; and 19% have severe impairment (6). Considering that ALFs are private facilities which need to provide an economically feasible margin through staffing, overhead, and private reimbursement (that is about half of the cost of a skilled nursing home bed) questions arise regarding whether ALFs are appropriately suited to provide care to individuals with moderate to severe cognitive impairment. This is a contentious point in the industry, given that less than half of ALFs have a registered nurse on staff or licensed practical nurse hours (4). Correspondingly, hospitalization rates for moderate to severe dementia residents were 69% and 42% higher respectively in ALFs than for similar residents in nursing homes (9). This also feeds into the issue of a lack in government regulations pertaining to ALFs.  Whether or not a consumer-driven model will provide an economic solution to finding appropriate care is still inconclusive.  After all, ALFs are emergent models that require more research and consumer-led education, lobbying, and outreach. Still today, very little research has shown the outcomes of care for dementia patients in Assisted Living.
The US can no longer assume that an older adult will fit into one of three global/standard care models. We must begin to redesign care for our older adults by meeting older adults where they are in their life course, and with their input, design supportive care solutions that have the inherent ability to change as one’s care needs and preferences change. For example, cutting edge healthcare organizations are beginning to incorporate patient choice in one’s care plan. The creation of a care plan is multifactorial and based on one’s preferences. These preferences take into account treatment options between biomedicine and alternative medicine, one’s inclination towards pain, quality of life, risk and even types of healing that extend beyond the person, incorporating the larger family unit in the decision process. The long term care industry should facilitate autonomy.  Care plans should innovate and possibly draw from artificial intelligence in order to create self-learning models that could update and predict particular changes in care needs and outcomes.  Autonomy is difficult to start initiating when someone already has severe dementia.  A possible solution, however, could be to rescale the ‘resident autonomy’, allowing the resident (and/or his/her family) to customize a set of services and progressive models of care in line with one’s lifestyle and the kind of future life they want to live out.

 

Conclusion

Assisted Living administrators across the country, are reporting that the number of claims, lawsuits, and settlements are increasing. Most administrators believe that this increased legal pressure is bound to reshape the regulatory framework of the ALF. Although this study doesn’t provide conclusive evidence to state that higher proportions of residents with moderate to severe cognitive impairment in Assisted Living is driving this trend, our results suggest that this phenomenon may be one explanation for the observed rise in litigation and worthy of further research and policy action. A broader explanation for the rise in litigation could be that the Assisted Living industry is experiencing the effects of a non-consumer driven environment exacerbated by an increasingly diverse, wide and complex population of older adults.
The ideal solution to the rising legal scrutiny would be to re-establish assisted living to allow for individualized and dynamic care planning. However, this cultural shift will take time. A short-term necessity will be to clearly define the threshold care needs that Assisted Living can safely and economically provide. According to our research, a threshold of care should be defined through individual agreements between each resident and the facility. Ideally, the facility is obligated to provide the supportive care necessary to allow the individual to preserve the kinds of autonomy they desire. Increased autonomy may result in compromised safety metrics (e.g. an uptick in the number of falls). Therefore, if a facility decides to accommodate the kinds of autonomy a person wishes to have, that facility should be afforded some meaningful legal protection.
Given the well-documented variation across the Assisted Living industry and the lack of federal regulation, Kathryn Hawes states that the effort to define quality in Assisted Living takes on a “Sisyphean cast”. Hawes goes on to say that “[…] there has been substantial progress with nursing home care, at least at a conceptual level, the rock slips and one is then faced with the uphill challenge of considering quality’s meaning in a new and different care modality— [Assisted Living] (10).”  If no threshold of care standard is established and institutionally monitored, lawsuits will continue to increase which may force policy initiatives to be reactive and tip the balance disproportionately toward safety as opposed to autonomy; a criticism common to nursing homes. It is time for ALFs to set reasonable boundaries and reestablish themselves as innovative care providers. ALFs can shield themselves from legal scrutiny and reserve a place for individuals that need person-centered care by shifting the focus from developing a solution for a population to designing a dynamic solution based on the ever-changing needs and input of the consumer.

 

Conflict of interest: There were no identified conflicts of interest in this article.

Ethical standard: All respondents of the survey were informed how their responses would be used. There were no financial or personal relationships that would bias the findings.

 

References

1.    Adelman, R. Esq. (2013). Assisted living lawsuits: An ounce of prevention is worth a pound of cure. Geriatric Nursing, 34(16), 6e169.
2.    The survey was reviewed by two health policy lawyers and a long-term care quality expert at the University of Pittsburgh’s School of Public Health before distribution.
3.    The nine states were broken down into three regions (East, Middle, and West) and included: NY, PA, FL, KY, SD, CO, TX, CA, NV. No Assisted Living facilities in OR provided a response.
4.    Han, K., Trinkoff, A. M., Storr, C. L., Lerner, N., &Yang, B. K. (2016). Variation Across US Assisted Living Facilities: Admissions, Resident Care Needs, and Staffing. Journal of Nursing Scholarship.
5.    Mollica, R. (1998). State regulation update: States are adopting new rules at a brisk pace. Contemporary Long Term Care, 21, 45-49..
6.    Zimmerman, S., Sloane, P. D., & Reed, D. (2014). Dementia prevalence and care in assisted living. Health Affairs, 33(4), 658-666
7.    2009 Overview of Assisted Living – AHCA/NCAL
8.    As defined by the Alzheimer’s Association – https://www.alz.org/alzheimers-dementia/stages
9.    Sloane, P. D., Zimmerman, S., Gruber-Baldini, A. L., Hebel, J. R., Magaziner, J., & Konrad, T. R. (2005). Health and functional outcomes and health care utilization of persons with dementia in residential care and assisted living facilities: comparison with nursing homes. The Gerontologist, 45 (suppl. 1), 124-134.
10.    Hawes, C., & Phillips, C. D. (2007). Defining quality in assisted living: Comparing apples, oranges, and broccoli. The Gerontologist, 47(suppl_1), 40-50.

EXPLORING THE TRAJECTORIES OF QUALITY OF LIFE AND ITS COVARIATES IN NURSING HOME RESIDENTS: A LONGITUDINAL STUDY

 

I. Røen1, J. Šaltytė Benth1,2,3  , Ø. Kirkevold1,4,5, I. Testad6,7,8, G. Selbæk1,4,9, K. Engedal4, S. Bergh1,4

 

1. Centre for Old Age Psychiatric Research, Innlandet Hospital Trust, Ottestad, Norway; 2. Institute of Clinical Medicine, Campus Ahus, University of Oslo, Oslo, Norway; 3. Health Services Research Unit, Akershus University Hospital, Lørenskog, Norway; 4. Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway; 5. Norwegian University of Science and Technology (NTNU), Department of Health Science in Gjøvik, Gjøvik, Norway; 6. Centre for Age-Related Medicine – SESAM, Stavanger University Hospital, Stavanger, Norway; 7. Department of Old Age Psychiatry, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK; 8. University of Exeter Medical School, St Luke’s Campus, University of Exeter, UK. 9. Faculty of Medicine, University of Oslo, Oslo, Norway. Corresponding author: Irene Røen, Centre for Old Age Psychiatric Research, Innlandet Hospital Trust, p.b. 68, 2312 Ottestad, Norway.  E-mail address: irroee@sykehuset-innlandet.no, Phone: +47 90652165

Jour Nursing Home Res 2019;5:8-19
Published online Februay 11, 2019, http://dx.doi.org/10.14283/jnhrs.2019.2

 


Abstract

Background: There is no cure for dementia and appropriate care should be offered to improve or maintain quality of life for those living with dementia. Objectives: To identify groups of residents following similar trajectories of quality of life after nursing home admission, to examine which resident, staff, and organizational characteristics at baseline differ between the identified groups, and to assess the associations between the trend in quality of life and the same characteristics measured at baseline and over the study period. Design: A prospective, observational, longitudinal cohort design over 30 months. Setting: Nursing homes in Norway. Participants: Residents admitted to nursing homes. Measurements: Resident data on quality of life, dementia, pain, activities of daily living, physical health, neuropsychiatric symptoms, medication, and demographic characteristics were obtained by interviews. Unit characteristics and the staff data on person-centered care, psychosocial factors, and job satisfaction were obtained by questionnaires and interviews. The physical environment of the unit was assessed by structured observation. Results: 694 residents admitted to a nursing home and 1161 staff from 175 nursing home units participated. Three resident groups following similar trajectories in quality of life were identified by growth mixture model; good quality of life (53.6%), moderate quality of life (32.9%), and poor quality of life (13.4%). All groups’ quality of life decreased over time. More pain, more severe dementia, and more affective symptoms at baseline were associated with belonging to the poor quality of life group. Overall decline in quality of life was associated with more severe dementia, more pain, poorer function in activities of daily living, more severe neuropsychiatric symptoms among residents, and poorer job satisfaction among staff. Conclusion: Reducing pain, reducing NPS, improving activities of daily living for the residents, and improving the staff’s job satisfaction may be factors of importance to improve the residents’ quality of life.

Key words: Quality of life trajectories, nursing home, dementia, job satisfaction, physical environment.


 

 

Introduction

Dementia is a chronic syndrome that can be caused by a variety of brain disorders, most frequently Alzheimer’s disease. It is characterized by cognitive decline, impaired functioning in daily life activities, deterioration of emotional control, and change of social behavior or motivation, and is one of the factors most strongly associated with admission to a nursing home (NH) (1).
There is no cure for any of the brain disorders causing dementia, and appropriate care should be offered to improve or maintain the quality of life (QoL) of persons with dementia (2). QoL is a multidimensional concept encompassing the emotional, physical, social, and environmental domains of a person’s wellbeing (3). Several studies have investigated QoL in NH patients, both self reported and proxy reported (family and staff), where age, ADL, dementia severity, pain, psychiatric disorders, pulmonary diseases and neuropsychiatric symptoms (NPS), are found to be associated with reduced QoL in NH patients with dementia (4, 5). Previous studies, following QoL in persons with dementia over time in NH, found QoL to be rather stable (6-8). Attention towards improving quality of NH care and QoL for NH residents is needed, and staff knowledge and skills should be reinforced to maintain or improve the residents’ QoL. A review from 2016 found that when the staff were trained to interact empathetically and humanely with the patients in their care, the residents experienced fewer depressive symptoms, less functional dependence, better food intake, and less psychotropic medications were prescribed. The review concluded that associations exist between potentially adjustable staff variables and Quality of care onwards to QoL (9).
Person-centered care (PCC) is regarded as good quality of care and is a guiding principle in dementia care (10, 11). An increasing amount of literature has evaluated resident outcomes of PCC, showing significant benefits such as decrease in NPS, reduced prescription of psychotropic medication, improved mood, improved QoL, and cost-effectiveness in providing care to persons with dementia in long-term care (11, 12).
Additionally, a recent literature review concluded that the physical environment of care settings is important in improving the residents’ QoL and in improving quality of care practices (13).
The previous longitudinal studies on QoL in nursing homes (6-8) have small cohort size, follow their participants over a short period of time, and to a lesser extent investigate associations with important patient, staff- and NH-variables. Therefore, we designed a study to identify groups of residents following similar trajectories of QoL after admission to NH, over a period of 30 months; and, to examine how resident, NH staff, and unit characteristics measured at baseline were associated with the group-belonging. Additionally, we aimed at assessing the associations between the same characteristics and the overall trend in QoL, with the characteristics measured simultaneously as QoL whenever possible.

 

Methods

Design

This is a longitudinal observational study of patients in 47 NHs in Norway, previously described in the “Resource Use and Disease Course in dementia – Nursing Home (REDIC-NH) study” (14). Resident baseline data were collected at admission to the NH (within one month of admission), and follow-up data were collected biannually for 30 months. The baseline data were collected between March 2012 and November 2014, and the last follow-up data were collected in May 2017.
NH demographics and staff characteristics were obtained through questionnaires distributed to the staff and the head nurse of the NH units; these included both standardized questionnaires and questions developed for this study by the reseach group. The members of the research group are highly experienced in both clinical practice and NH research, and the questions developed were based on previous experience, and literature regarding organizational and structural factors in NH (i.e. staff level and education, leadership, management, physical environment and culture). The physical environment of the units was assessed by structured observation between October 2013 and December 2014, presented in a previous study (15).

Ethics approval and consent to participate

The residents’ capacity to consent to participate in the study was evaluated by the NH staff and physician, in close collaboration with relatives. Written consent for participation was obtained from all participants with the capacity to consent, and for participants lacking the capacity to consent, the next of kin gave consent on behalf of the residents. Data from the staff and the head nurses were collected anonymously.The Regional Ethics Committee for Medical Research in South-Eastern Norway approved the study (2011/1738a).

Participant inclusion criteria

Nursing home resident

All residents 65 years or older, regardless of degree of cognitive function, were eligible for inclusion in the study. In addition, we included residents younger than 65 years with established dementia, as their symptoms and functional decline over time resembles elderly patients in NH. Residents with an expected stay in the NH under four weeks or an expected life expectancy of less than six weeks were excluded.

Nursing home staff

NH staff who knew the residents in the unit and the organizational structure of the unit well, were eligible for inclusion in the study.

Sample characteristics and measurements

Nursing home residents

Demographic characteristics of the residents included age, gender, marital status, and medication. The residents’ QoL was assessed with the Quality of life in Late-Stage Dementia scale (QUALID), a standardized and validated proxy-based questionnaire with a sum score ranging from 11 to 55, with lower scores indicating a better QoL (16). QUALID is not validated for persons without dementia, but as the aim of the study was to follow the participants over 30 months we expected that some of the participants without dementia at baseline, would develop dementia during the study period. In addition, some participants would have severe dementia and a proxy-based QoL assessment tool would be useful. Therefore, we judged QUALID a sensible assessment tool in our study. Dementia at baseline was diagnosed independently by GS, KE and SB using all available collected information. In case of disagreement the cases were discussed until consensus was reached. Dementia severity was assessed with the Clinical Dementia Rating scale (CDR), a global rating scale covering six domains of cognitive and functional performance (17). The CDR sum of boxes (CDR-SOB) was calculated by adding the domain scores, which range from 0 – 18, with a higher score indicating more severe dementia (18). Pain was assessed with the Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale (MOBID-2), which consists of 10 items, each item score ranging from 0 to 10, with a higher score indicating more severe pain (19). ADL function was assessed with the Physical Self-Maintenance Scale (PSMS), a six-item scale ranging from 6 to 30, with a higher score indicating a lower level of functioning (20). General physical health was assessed using the General Medical Health Rating (GMHR) scale, a one-item global rating scale with four categories (excellent, good, fair, poor) (21). Neuropsychiatric symptoms (NPS) were assessed using the 12-item Neuropsychiatric Inventory nursing home version (NPI-NH) (22). An NPI item score was calculated by multiplying frequency (0-4) with severity (0-3), producing an item score (0-12), with a higher score indicating more severe NPS. NPI sub-syndrome scores were calculated based on a previous factor analysis: NPI agitation (agitation/aggression, disinhibition, and irritability, range 0-36), NPI psychosis (delusions and hallucinations, range 0-24), and NPI affective (depression and anxiety, range 0-24) (23).

Nursing home staff

NH staff characteristics were obtained through questionnaires, and included age, gender, Norwegian as first language, number of years of health-related education, experience in the current job, and percentage of full-time position.
Person-centered care was assessed with the Person-centered Care Assessment Tool (P-CAT), consisting of 13 items that are formulated to measure staff perceptions of the practice in the unit where they work. The total score ranges from 13 to 65, with higher scores indicating a higher level of PCC (24).
Work-related psychosocial factors were assessed with 32 of the 129 items in the General Nordic Questionnaire for Psychosocial and Social Factors at Work (QPS-Nordic), covering essential social and psychological factors at work (25). The 32 items are distributed across 10 scales; each scale consists of 3 or 4 items, giving a subscale score of 3-15 or 4-20, with higher scores indicating better work-related psychosocial factors.
NH staff’s job satisfaction was measured with a single question: “How would you describe your general experience of your job satisfaction?” with seven possible answers: “very bad – bad – unsure – quite good – good – excellent”.

Unit characteristics

A unit in a NH was defined as a group of residents who live together with a common living area and who have their own care staff during the daytime. Data were collected about the unit size (number of residents); the daytime staff/resident ratio (the number of NH staff working per resident during the daytime); the type of unit (special care unit [SCU] or regular unit [RU]); the number of hours the nursing home physician was working per resident per week; the number of units per head nurse; and whether the unit had a nursing professional development specialist.
The physical environment of the unit was assessed with the Special Care Unit Environmental Quality Scale (SCUEQS), a summary scale embedded in the Therapeutic Environment Screening Survey for Nursing Homes (TESS-NH) (26). Scores range from 0 – 41, with higher scores indicating a better physical environment.

Statistical methods

Resident, NH staff, and unit characteristics were described as means and standard deviations (SD) or as frequencies and percentages. Participants vs. non-participants were compared by Independent samples t-test or χ2-test. Staff characteristics used in regression models were aggregated to a mean score at each unit. Missing values on staff-rated person-centered care (P-CAT) items were imputed on cases with fewer than 50% missing on the P-CAT scale by generating an empirical distribution for each item and drawing a random number from it. As an exploratory approach, growth mixture model was estimated to identify potential groups of residents that were following similar trajectories in QoL score throughout the study period. According to this method, the groups are identified based on individual trajectories of residents. The number of groups was determined by applying Akaike’s Information Criterion (AIC), where a smaller value indicates a better model. It was also required, that 95% confidence intervals of trajectories were non-overlapping and within-group probabilities high, preferably 0.80 or higher. Nominal regression analysis was performed to assess if resident and NH staff characteristics and/or factors related to the physical environment (as measured at baseline) were associated with group-belonging. No clustering within the NH-unit was present, and hence no adjustment was implemented into the nominal regression model. The associations between the same characteristics as measured at baseline or all assessments (whenever available) and the overall trend in QoL were assessed by estimating a linear mixed model with random effects for residents, units, and the interaction between the two. The fixed effects for time coded as dummies and for characteristics were included. The multiple models were further reduced by AIC. Regression models were estimated on cases with no missing values on covariates.
Statistical analyses were performed in IBM SPSS V25 and SAS 9.4. Results with p-values below 0.05 were considered statistically significant.

 

Results

Six-hundred and ninety-four residents and 1161 NH staff from 175 NH units from 47 NH, from 4 counties in Norway were included in the study.
To compare age and gender of participants vs. non- participants, 38 of the 47 NH collected data on all residents eligible for inclusion. Of 1331 eligible residents in the 38 NH, 607 were included and 724 did not participate (205 declined participation, 191 died before inclusion took place, and 328 was not included for unknown reasons). The mean age of participants was 84.4 years (SD 7.5), while for non-participants it was 83.6 years (SD 9.3) (p = 0.048); 64.4% of participants and 56.6% of non-participants were women (p = 0.004).
Table 1 presents resident, unit, and staff characteristics at baseline. The residents had a mean age of 84.4 years, 64% were women, 52.6% had poor/fair physical health, and the mean CDR-SOB was 10.3.

Table 1
Characteristics of residents, unit, and staff variables at baseline

N varies between variables due to missing data; * not married; including singles, widowed, and residents divorced or separated opposed to married; including residents being married or living with a partner; ** Nursing home unit was defined as a group of residents living together with a common living area and having their own care staff during the daytime; *** Staff variables aggregated at unit  n= 160/175; SD= standard deviation; GMHR= General Medical Health Rating Scale (excellent, good, fair, poor); CDR-SOB= Clinical Dementia Rating Scale sum of boxes (range 0 – 18); MOBID-2= Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale (range 0 – 10); PSMS= Physical Self-Maintenance Scale (range 6 – 30); NPI agitation= sum of agitation/aggression, disinhibition, and irritability (range 0 – 36); NPI psychosis= sum of delusions and hallucinations (range 0 – 24); NPI Affective= sum of depression and anxiety (range 0 – 24); SCUEQS= Special Care Unit Environmental Quality Scale (range 0 – 41); P-CAT= Person-centered Care Assessment Tool (range 13-65); QPS-Nordic= General Nordic Questionnaire for Psychosocial and Social Factors at Work; QPS-Nordic subscales each consist of 3 or 4 items (range 3-15 or 4-20)

 

Figure 1
QUALID scale sum scores by trajectory groups

QUALID: Quality of life in Late-Stage dementia scale, ranging from 11 to 55

 

Trajectories of QoL

Eight residents were excluded from the growth mixture model due to missing baseline QoL data, leaving 686 residents for the analysis. Three QoL groups of residents following similar trajectories were identified (Table 2 and figure 1). All three groups exhibited a decline in QoL over 30 months. The group with best QoL named “good QoL” (n = 368, 53.6%) experienced a small deterioration in QoL from 16.1 (see intercept table 2) to 18.2 points at 30-month follow-up. Another group named “moderate QoL” (n = 226, 32.9%) experienced a deterioration in QoL from 21.0 to 25.5 points at 30-month follow-up. The last group, named “poor QoL” (n = 92, 13.4%), experienced a stable QoL, from 30.6 to 31.5 points, during the first 24 months, and thereafter remaining stable until 30 months. Table 2 presents the demographic and clinical characteristics within the three groups.

Table 2
Parameter estimates of growth mixture model and residents’ characteristics within three groups of QoL *

* only cases with no missing item at baseline QUALID sum included; ** not married; including singles, widowed, and residents divorced or separated opposed to married; including residents being married or living with a partner; QoL= Quality of Life; SD= standard deviation; GMHR= General Medical Health Rating Scale (excellent, good, fair, poor); CDR-SOB= Clinical Dementia Rating Scale sum of boxes (range 0 – 18); MOBID-2= Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale (range 0 – 10); PSMS= Physical Self-Maintenance Scale (range 6 – 30); NPI agitation= sum of agitation/aggression, disinhibition, and irritability (range 0 – 36); NPI psychosis= sum of delusions and hallucinations (range 0 – 24); NPI Affective= sum of depression and anxiety (range 0 – 24)

 

Table 3 presents the results of the nominal regression model, with group-belonging as the outcome variable and characteristics measured at baseline as explanatory variables. In the AIC-reduced multiple model, more severe dementia, more pain (MOBID-2), and more severe affective symptoms at baseline were associated with higher odds of belonging to the group named moderat QoL and poor QoL groups compared to the group named good QoL, while more severe symptoms of agitation at baseline was associated with higher odds of belonging to the group named  poor QoL as compared to the group named  good QoL.

 

Table 3
Nominal regression model with QoL (QUALID score) group-belonging as outcome variable

Good QoL group as reference. N=561 (N=305 in good QoL group, N=182 in moderate QoL group, N=74 in poor QoL group), cases with at least one missing value on covariates were excluded

 

Variables associated with QUALID score over time

Table 4 presents the results of the linear mixed model for the associations between the residents’ QUALID score and the resident, staff, and unit characteristics measured simultaneously or, if not possible, at baseline. More severe dementia, more pain, lower ADL-function, and more severe NPS (except for the NPI psychosis sub-syndrome) were associated with decreasing QoL in the AIC-reduced multiple model. Better job satisfaction among the staff was associated with increasing resident QoL during the observation period.

Table 4
Linear mixed model with QoL (QUALID score, ranging from 11 to 55) sum as dependent variable
(N=1942, based on the number of residents assessed with QUALID at the six time points).
Cases with at least one missing value on covariates were excluded

GMHR= General Medical Health Rating Scale (excellent, good, fair, poor); CDR-SOB= Clinical Dementia Rating Scale sum of boxes (range 0 – 18); MOBID-2= Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale (range 0 – 10); PSMS= Physical Self-Maintenance Scale (range 6 – 30); NPI agitation= sum of agitation/aggression, disinhibition, and irritability (range 0 – 36); NPI psychosis= sum of delusions and hallucinations (range 0 – 24); NPI Affective= sum of depression and anxiety (range 0 – 24); SCUEQS= Special Care Unit Environmental Quality Scale (range 0 – 41); P-CAT= Person-centered Care Assessment Tool (range 13-65); QPS-Nordic= General Nordic Questionnaire for Psychosocial and Social Factors at Work; QPS-Nordic subscales each consist of 3 or 4 items (range 3-15 or 4-20)

 

Discussion

In the present study, we followed 694 nursing home residents for 30 months after admission to a nursing home. Three resident groups following distinct trajectories in QoL, as measured with the QUALID sum score, were identified. The majority of the residents belonged to the group named good QoL over time. This group and the group named poor QoL had the most stable QoL through the study period, although all three groups exhibited some decline in QoL. Furthermore, the study showed that more severe dementia, more pain, poorer ADL-function, and more severe NPS, as assessed throughout the study period, were associated with an overall decrease in QoL.
Several studies have shown an association between different resident characteristics and QoL (27, 28). The pattern is clear: more severe dementia, poorer ADL function, and more severe NPS—especially more severe depression and anxiety symptoms—are all associated with worse QoL (29). Our results are in line with these previous findings. Thus, to improve the residents’ QoL, it is important to treat or prevent pain and NPS, especially depression and anxiety, and to improve or maintain ADL function.
We found that higher job satisfaction among the staff at baseline was associated with an overall increase in the residents’ QoL. Previous studies have reported that job satisfaction is associated with quality of care (30), but to our knowledge no other studies have investigated the influence of staff job satisfaction on residents’ QoL. This is an important finding, underpinning the urgency of focusing on job satisfaction and retention of NH staff to meet the increasing need for qualified NH staff, due to an aging society. We expected that a higher level of PCC would improve the residents’ QoL, as a guiding principle for good quality of care (10, 11), but found no such association in the present study. However, in a previous study based on the same data, we found that the staff’s job satisfaction was positively associated with PCC (15), and efforts to improve the staff’s job satisfaction may improve both the PCC given at the ward and the residents’ QoL.
The importance of the physical environment is increasingly recognized as a therapeutic resource in NH (13). However, the present study was not able to demonstrate an association between the physical environment and the residents’ QoL. This may be due to the homogeneity between NH units included in the study, the characteristics of the assessment tool used, or the sample size. However, four staff and unit characteristics (staff at daytime/resident ratio, nurse educator at unit, QPS-N quantitative demands and fair leadership) were kept in the AIC-reduced model as important covariates, indicating that this factors contribute to the better model fit.
Interestingly, except for the staff’s job satisfaction, the only characteristics associated with the residents’ QoL were individual resident characteristics. This association was found both in the growth mixture and the linear mixed models, which strengthens the result. Other studies have demonstrated that there are associations between staff variables and the quality of care, influencing the resident’s QoL (9). Studies have also shown that PCC are positively associated with the staff’s job satisfaction (30), which may improve NPS in persons with dementia and can reduce NPS in people with dementia living in NH (12). Improving ADL function would be benefitical for the patients and improving their QoL.

Strengths and limitations

A strength of the study is that residents are included at admission to the NH, and the longitudinal follow-up design of the study with analysis of the residents’ characteristics and QoL at the same time points. The linear mixed model analysis captures how the residents’ characteristics change over the follow-up period simultaneously with their QoL changes. The same characteristics associated with poor QoL were found for both baseline characteristics and longitudinally assessed characteristics, and the two independent analyses confirming the same associations istrengthens the result.
There are several limitations in the study. The complex causal pathways between unit characteristics, staff characteristics, and resident characteristics are a limitation when designing a study that investigates which factors are associated with the residents’ QoL. Another limitation is the fact that the residents did not rate their own QoL; rather, we had to rely on proxy report by the NH staff, which could possibly lead to biased data. When proxies rate a person as having reduced function in ADL and NPS, they may also assume that the person’s QoL is reduced. It is reported that people with dementia rate their QoL higher than proxies do (2). However, the proxies assessed the residents’ QoL with a standardized and validated questionnaire, that is used internationally to rate QoL, which should help to reduce the subjectivity in the rating.
Patient characteristics were assessed every six month, but units and staff characteristics were assessed only once, at baseline, which is a limitation in the study. While the unit characteristics would be rather stable over the follow-up period, staff characteristics could change due to increased or decreased knowledge or new staff recruiting.
Finally, limitations due to the data collection procedure should be noted, as a high number of project nurses collected data on resident characteristics, which could in turn excess heterogeneity of the data. Furthermore, the study cohort may not accurately represent the general NH population, as information from 38 of the 47 NH revealed that there were more women in the included-residents group than in the eligible-but-not-included residents group (14, 15).

 

Conclusion/relevance

Overall, the majority of residents belonged to the group named good QoL over the observation period of 30 months. Residents in the group named poor QoL was associated with having more pain, more severe dementia, more affective symptoms, and living in a unit with poorer staff job satisfaction at baseline, as well as more pain, poorer ADL function, and more severe NPS measured simultaneously. As dementia is a chronic disease, focus on symptom relief and QoL is important. Efforts that focus on reducing pain, reducing NPS, and improving ADL function for the resident, as well as improving the job satisfaction of the staff may be important factors to improve resident QoL.

 

Conflict of interest: None.

Description of authors’ roles: I. Røen designed the study, collected the data and wrote the paper. J. Šaltytė Benth performed the statistical analysis and assisted with writing the paper. Ø. Kirkevold was involved in designing the study and in the statistical analysis, and assisted in writing the paper. I. Testad critically revised the manuscript. G. Selbæk was involved in designing the study and critically revised the manuscript. K. Engedal critically revised the manuscript. S. Bergh was involved in designing the study, supervised the data collection and assisted with writing the paper. All authors read and approved the final version of the manuscript.

Funding: The Norwegian Health Directorate provided funding for the data collection. The first author’s Ph. D. study was funded by the Research Counsil of Norway.The sponsors had no role in the design and conduct of the study; in the collection, analysis, and interpretation of data; in the preparation of the manuscript; or in the review or approval of the manuscript. This work was supported by the by the Norwegian Health Directorate and the Research Council of Norway.

Acknowledgments: The REDIC-NH study was administrated by the Centre for Old Age Psychiatric Research, Innlandet Hospital Trust, and was initiated by the Norwegian Health Directorate, which also provided funding for the data collection. The first author’s Ph. D. study was funded by the Research Council of Norway.

Contributions of others who did not merit authorship but participated in the research: Nursing Homes in Hedmark, Oppland, Hordaland, and Nord-Trøndelag counties participated in the study. We would like to thank the residents and their next of kin for participating in the study and for giving us their information. We would also like to thank the nursing home managers for their cooperation, the staff members in the nursing home that filled out the questionnaires, and the research nurses that collected the data.

 

References

1.    Wang SY, Shamliyan TA, Talley KM, Ramakrishnan R, Kane RL. Not just specific diseases: systematic review of the association of geriatric syndromes with hospitalization or nursing home admission. Archives of gerontology and geriatrics. 2013;57(1):16-26.
2.    Moyle W, Fetherstonhaugh D, Greben M, Beattie E. Influencers on quality of life as reported by people living with dementia in long-term care: a descriptive exploratory approach. BMC geriatrics. 2015;15:50.
3.    Lawton MP. Quality of life in Alzheimer disease. Alzheimer disease and associated disorders. 1994;8 Suppl 3:138-50.
4.    Holopainen A, Siltanen H, Pohjanvuori A, Makisalo-Ropponen M, Okkonen E. Factors associated with the quality of life of people with dementia and with quality of life-improving interventions: Scoping review. Dementia (London, England). 2017:1471301217716725.
5.    Klapwijk MS, Caljouw MA, Pieper MJ, van der Steen JT, Achterberg WP. Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study. Dementia and geriatric cognitive disorders. 2016;42(3-4):186-97.
6.    Oudman E, Veurink B. Quality of life in nursing home residents with advanced dementia: a 2-year follow-up. Psychogeriatrics : the official journal of the Japanese Psychogeriatric Society. 2014;14(4):235-40.
7.    van der Zon A, Wetzels RB, Bor H, Zuidema SU, Koopmans R, Gerritsen DL. Two-Year Course of Quality of Life in Nursing Home Residents with Dementia. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry. 2018.
8.    Reimer MA, Slaughter S, Donaldson C, Currie G, Eliasziw M. Special care facility compared with traditional environments for dementia care: a longitudinal study of quality of life. Journal of the American Geriatrics Society. 2004;52(7):1085-92.
9.    Anderson K, Bird M, MacPherson S, Blair A. How do staff influence the quality of long-term dementia care and the lives of residents? A systematic review of the evidence. International psychogeriatrics. 2016;28(8):1263-81.
10.    Brooker D. What is person-centered care in dementia? Reviews in Clinical Gerontology. 2004;13(3):215-22.
11.    Li J, Porock D. Resident outcomes of person-centered care in long-term care: a narrative review of interventional research. International journal of nursing studies. 2014;51(10):1395-415.
12.    Testad I, Corbett A, Aarsland D, Lexow KO, Fossey J, Woods B, et al. The value of personalized psychosocial interventions to address behavioral and psychological symptoms in people with dementia living in care home settings: a systematic review. International psychogeriatrics. 2014;26(7):1083-98.
13.    Chaudhury H, Cooke HA, Cowie H, Razaghi L. The Influence of the Physical Envirnment on Residents With Dementia in Long-Term Care Settings: A Review of the Empirical Literature. The Gerontologist. 2017;Vol. 00(00):1–13.
14.    Roen I, Selbaek G, Kirkevold O, Engedal K, Testad I, Bergh S. Resourse Use and Disease Couse in dementia – Nursing Home (REDIC-NH), a longitudinal cohort study; design and patient characteristics at admission to Norwegian nursing homes. BMC health services research. 2017;17(1):365.
15.    Roen I, Kirkevold O, Testad I, Selbaek G, Engedal K, Bergh S. Person-centered care in Norwegian nursing homes and its relation to organizational factors and staff characteristics: a cross-sectional survey. International psychogeriatrics. 2017:1-12.
16.    Weiner M, Martin-Cook K, Svetlik D, Saine K, Foster B, Fontaine C. The quality of life in late-stage dementia (QUALID) scale 2000 [12818023]. 114-6].
17.    Hughes CP, Berg L, Danziger WL, Coben LA, Martin RL. A new clinical scale for the staging of dementia. The British journal of psychiatry : the journal of mental science. 1982;140:566-72.
18.    O’Bryant SE, Waring SC, Cullum CM, Hall J, Lacritz L, Massman PJ, et al. Staging dementia using Clinical Dementia Rating Scale Sum of Boxes scores: a Texas Alzheimer’s research consortium study. Archives of neurology. 2008;65(8):1091-5.
19.    Husebo BS, Strand LI, Moe-Nilssen R, Husebo SB, Snow AL, Ljunggren AE. Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale (MOBID): development and validation of a nurse-administered pain assessment tool for use in dementia. J Pain Symptom Manage. 2007;34(1):67-80.
20.    Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. The Gerontologist. 1969;9(3):179-86.
21.    Lyketsos CG, Galik E, Steele C, Steinberg M, Rosenblatt A, Warren A, et al. The General Medical Health Rating: a bedside global rating of medical comorbidity in patients with dementia. Journal of the American Geriatrics Society. 1999;47(4):487-91.
22.    Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994;44(12):2308-14.
23.    Selbaek G, Engedal K. Stability of the factor structure of the Neuropsychiatric Inventory in a 31-month follow-up study of a large sample of nursing-home patients with dementia. International psychogeriatrics. 2012;24(1):62-73.
24.    Edvardsson D, Fetherstonhaugh D, Nay R, Gibson S. Development and initial testing of the Person-centered Care Assessment Tool (P-CAT). International psychogeriatrics. 2010;22(1):101-8.
25.    Dallner M, Elo, A.-L., , Gamberale F, Hottinen V, Knardahl S, Lindström K. Validation of the general Nordic questionnaire (QPSNordic) for psychological and social factors at work. Copenhagen; 2000.
26.    Sloane PD, Mitchell CM, Weisman G, Zimmerman S, Foley KM, Lynn M, et al. The Therapeutic Environment Screening Survey for Nursing Homes (TESS-NH): an observational instrument for assessing the physical environment of institutional settings for persons with dementia. The journals of gerontology Series B, Psychological sciences and social sciences. 2002;57(2):S69-78.
27.    Mjorud M, Rosvik J, Rokstad AM, Kirkevold M, Engedal K. Variables associated with change in quality of life among persons with dementia in nursing homes: a 10 months follow-up study. PLoS One. 2014;9(12):e115248.
28.    Naylor MD, Hirschman KB, Hanlon AL, Abbott KM, Bowles KH, Foust J, et al. Factors Associated With Changes in Perceived Quality of Life Among Elderly Recipients of Long-Term Services and Supports. Journal of the American Medical Directors Association. 2016;17(1):44-52.
29.    Beerens HC, Zwakhalen SM, Verbeek H, Ruwaard D, Hamers JP. Factors associated with quality of life of people with dementia in long-term care facilities: a systematic review. International journal of nursing studies. 2013;50(9):1259-70.
30.    van den Pol-Grevelink A, Jukema JS, Smits CH. Person-centred care and job satisfaction of caregivers in nursing homes: a systematic review of the impact of different forms of person-centred care on various dimensions of job satisfaction. International journal of geriatric psychiatry. 2012;27(3):219-29.

IMPLEMENTATION OF THE MONTESSORI PROGRAM IN ASSISTED LIVING: POSITIVE OUTCOMES AND CHALLENGES

 

J. Brush1, N. Douglas2, M. Bourgeois3

 

1. Brush Development, Chardon, OH, USA; 2. Central Michigan University, Mount Pleasant, MI, USA; 3. University of South Florida, Tampa, FL, USA.  Corresponding author: Jennifer Brush, Brush Development, 9935 Campton Ridge Drive, Chardon, OH 44024, jennifer@BrushDevelopment.com, 440-289-0037

Jour Nursing Home Res 2018;4:42-48
Published online November 19, 2018, http://dx.doi.org/10.14283/jnhrs.2018.9

 


Abstract

The purpose of this study was to evaluate the impact of the implementation of the Association Montessori Internationale (AMI) Montessori for Dementia and Aging (1) (MDA) program in a memory care Assisted Living community. A pre-post quasi experimental descriptive study was conducted with 29 elders in an assisted living community. The AMI MDA program1 was implemented over the course of one year; adoption of program features was documented pre- and post-implementation. Outcomes for elders included number of neuropsychiatric symptoms due to dementia (Cohen-Mansfield Agitation Inventory (2)), falls, medications and hospitalizations; attitude, attention and engagement (Observational Measure of Engagement (3)), affect (Observed Emotion Rating Scale (4)); and the Dementia Quality of Life Scale (5). The Benjamin Rose Nurse Assistant Job Satisfaction Scale (6) was used to measure employee job satisfaction before and after implementation of the program. After 1 year, the community had adopted 68% of program features compared to 28% at study start. Elders displayed significantly more positive emotions, affect, and feelings of self-esteem and belonging after the intervention; positive trends were documented for increased engagement. Overall, employee job satisfaction was higher after the implementation of the program; barriers to full implementation, however, were identified.

Key words: Montessori, aging, dementia, assisted living.


 

Introduction

A new person-centered approach for long-term care and aging in place communities, AMI Montessori for Dementia and Aging (1) extends the tenets of person-centered care by focusing on the abilities, needs, interests, and strengths of persons with dementia. This innovative team approach creates worthwhile and meaningful roles, routines, and activities for the person within a supportive physical environment. Montessori’s philosophy was to enable persons to be as independent as possible, to have a meaningful place in their community, to possess high self-esteem, and to have the chance to make meaningful contributions to their community. The purpose of this study was to evaluate the impact of the implementation of the AMI MDA (1) program on elder and staff outcomes in a memory care Assisted Living community. The AMI MDA program was created based on the pedagogical philosophy of Dr. Maria Montessori and evidenced based person-centered approaches (7) to dementia care.  The merging of the two disciplines results in a person-centered approach to life that addresses the cognitive, physical, spiritual, social and emotional needs of elders and those living with dementia. This approach facilitates changes to the way one interrelates with elders and people with dementia by improving the quality of interactions.  The goal of the program was to form and maintain a caring community that is aligned with elders’ needs, interests, and abilities by creating an environment that is carefully prepared to provide opportunities for success, choice, enhanced independence and self-initiated activity. Elders’ lives are therefore enriched through the engagement in roles, routines and activities, fostering a sense of community belonging and well-being.
The AMI Montessori for Dementia and Aging Advisory Board has established standards and quality indicators for the application of Montessori in an aged care setting (1).  The standards address three critical areas of program implementation: leadership; staff; and the prepared environment.  In a community that has fully implemented this philosophy, the organizsation’s leadership encourages elders to be actively involved in the decision making related to daily life.  Multi-disciplinary teams are created, with a commitment to working together, with the purpose of meeting the needs of each person in their care.  In addition, the organization’s leadership uses effective communication tools to give staff, families, and elders a full understanding about the Montessori approach. There are financial commitments to budget allocations for best practice resources and staff training is conducted by a certified AMI Montessori for Dementia and Aging Educator. There is a formal commitment to continuous improvement of the implementation of MDA.  For instance, staff collect, maintain and use a comprehensive individual profile of needs, interests and strengths. Through collaboration with elders and their families, staff actively seek out and create opportunities for elders to act independently, exercise choice, move about with freedom and engage in activities of interest. Throughout the day, observation is utilized as a key tool for reflection and identification of individual needs. The environment must be visually organized and aesthetically pleasing. Shared spaces in the care community must provide enticement to engage by having dedicated, interactive areas allocated for activities. A Montessori community has evidenced-based cues and modifications in the environment to support independence. The environment should offer a full complement of appropriate multisensory materials, resources and activities that are accessible at any time.

Study Purpose

The purpose of this project was to implement and evaluate the AMI MDA program in a memory care Assisted Living community.  The program had the following goals:
1. Demonstrate implementation of the MDA program by increasing the adoption of environmental, staff, and leadership features of the program.
2. Increase elder engagement in purposeful activities, improve sense of well-being, improve affect, reduce psychotropic medication use, hospitalizations and falls, and reduce occurrence of neuropsychiatric symptoms due to dementia.
3. Increase staff job satisfaction.

 

Methods

The Institutional Review Board of Ideas Institute approved all study procedures and consent forms. This study utilized a pre-post, quasi-experimental design to implement and evaluate outcomes of the MDA program in one Midwestern assisted living in the United States. The assisted living is part of a non-profit continuing care retirement community housed on two campuses that includes independent and assisted living as well as skilled nursing.  The assisted living area contains 42 private bedrooms and shared activity, dining and living room spaces.

Participants

Study participants were (1) 29 elders with dementia or other cognitive impairment who resided in the community and (2) 22 employees of the assisted living community. An introductory letter and consent form was sent to the person holding durable power of attorney for each elder in the community.  After receipt of the signed consent form, the authors reviewed the elder’s medical chart; completed a communication, cognitive and reading screening of the elder; conducted an observation during their daily activities; and completed the quality of life assessment. Participants who were employees of the assisted living community provided informed consent to complete the following: 1) a job satisfaction survey (6); and 2) a rating of the elder’s neuropsychiatric symptoms (2) throughout the course of 2-weeks.

Measures

Measures used to collect data from participants who were elders with dementia or other cognitive impairment included: 1) chart review confirming diagnosis of dementia or other cognitive impairment; frequency of hospitalizations, falls, neuropsychiatric symptoms due to dementia and medications per nursing notes in the six months before and 3 months after implementation of the program; 2) informal communication screening (8)) and reading screening (9)) ; 3) the Montréal Cognitive Assessment  (MoCA) (10); 4) the Observational Measure of Engagement (3); 5) the Observed Emotion Rating Scale (4)); and, 6) the Dementia Quality of Life Scale (5). Employee participants completed the Benjamin Rose Nurse Satisfaction Survey (6), and the Cohen-Mansfield Agitation Inventory (2) for elder participants in the study. Lastly, a program implementation checklist adapted from AMI MDA standards (Table 1) was also completed to assess program fidelity and measure specific elements of program implementation. All of these measures with the exception of the informal communication screening, reading screening and MoCA were re-administered post- implementation and are described in more detail below.

 

After informed consent was completed, the second author reviewed each participant’s medical record to confirm diagnosis of cognitive impairment or dementia related disorder. The number of current medications, falls and hospitalizations was also recorded in the prior 6 months pre-implementation (6-months prior to implementation month 1) and at 3- months post-implementation. Finally, nursing notes were reviewed by the second author to assess frequency of neuropsychiatric symptoms due to dementia in the prior 6 months pre-implementation (6-months prior to implementation month 1) and at 3-months post-implementation. Neuropsychiatric symptoms due to dementia were defined as events that were significant enough for the nursing staff to record in a log and included violence toward other elders, inappropriate sexual advances toward other elders and verbal lashing out toward care partners.
The informal communication screening (8) was administered to each elder as well. The participant was asked his or her age, primary language, and they were observed as to whether or not they had glasses and/or hearing aids. During this process, elders were asked to about their education, hobbies, former occupation, likes and dislikes. The researchers observed conversational features of the elder including the ability to maintain topic, to initiate new topics, to request clarification, to take turns and ask questions. Researchers also noted if the elder was verbal at the single word, short phrase, few sentences or many sentences level. A reading screening was then conducted with each elder (9). Elders were assessed according to the optimal font for oral reading and reading for following simple, 1-step directions.
The MoCA (10) was completed with each elder for descriptive purposes only. The MoCA is a well-studied cognitive screener assessing visuospatial and executive functioning, naming, memory, attention, language, abstraction, delayed recall and orientation. Normal cognitive functioning is considered to be a score of 26 or higher out of 30 possible points, adding an additional point for any individuals who have 12 years of education or less.

The Observational Measure of Engagement (3) involved the investigators rating each elder according to ‘Attention’ and ‘Attitude’ during a 5-minute observation of the elder during an activity. Attention was rated on a 4 point Likert scale where 1 corresponds to ‘not attentive’ and 4 corresponds to ‘very attentive’. Attitude was ranked on a 7 point Likert scale, ranging from 1 (very negative) to 7 (very positive). Inter-rater reliability for this measure was reported to be 84% for engagement outcome measures (3).
The Observed Emotion Rating Scale (4) was completed for each elder as well. The investigators ranked elders according to their facial affect and other qualities that display either negative emotions or positive emotions. The maximum score for the display of both positive and negative emotions is 5, corresponding to the idea that the participant strongly displays that emotion. The minimum score for the display of both positive and negative emotions is 1, corresponding to the idea that the participant never displays that emotion. Kappa reliability for each of these emotion ratings was reported to be .76 or higher and validity, and validity estimates were also deemed supportive of the measure.
The Dementia Quality of Life Scale (5) is a self-report measure of 5-constructs of quality of life: positive affect, negative affect, feelings of self-esteem, feelings of belonging, and experience of aesthetics. Visual supports, including a 24-point type size rating scale and captioned pictures representing the topic of the questions, were used to support communication during the administration of this measure. Internal consistency of all constructs was reported to be .67 or higher
The Benjamin Rose Nurse Assistant Job Satisfaction Scale (6) was administered as a measure of job satisfaction before and after implementation of the program. A score of 0 reflects a highly dissatisfied employee and a score of 3 reflects a highly satisfied employee. This measure has been shown to demonstrate appropriate validity and reliability of .92 (6).
The Cohen-Mansfield Agitation Inventory (2) was completed by employee participants for all participants at pre-and post-implementation of the program. Familiar staff rated levels of agitation for 29 types of physical and verbal aggressive and non-aggressive behavior. While there are subscales to this measure, for the purposes of this study, participants were given an overall agitation score, ranging from 150 (maximum agitation) to 29 (minimum agitation). Cronbach’s alpha for this measure was reported to be .86, .91 and .87 for raters (2).
A Program Implementation Checklist adapted from the AMI MDA standards was developed to record the frequency of the program features/standards in place before and after the program was implemented.  As shown in Table 1, three standards areas were assessed: Leadership (7 features), Staff (9 features) and Prepared Environment (6 features), for a total of 88 required components of a fully implemented program. Each feature was observed to be:  0=Not at all implemented; 1=started to be implemented; 2=moderately implemented; 3=mostly implemented; 4=fully implemented.

Data Analysis

All raw data was entered into Microsoft Excel and later SPSS 24. Descriptive data analysis of all variables included means, standard deviations and ranges of responses. Pre-post and paired sample t-test comparisons were conducted as appropriate.

Implementation of Montessori Program Procedures

After obtaining consent for the elder participants, and collecting the pre-implementation measures the project began with a two-day educational workshop by the first author; 80% of the care partners, nurses, and other life enrichment staff who worked in the care area attended the workshop (8 Life care enrichment staff, 3 nurses, and 11 care partners, respectively). The didactic, interactive presentation included hands on practice with Montessori materials. A team was then created to lead the Montessori initiative within the community. This team, in collaboration with the first author, identified barriers to participation and needed environmental cues to support the Montessori activities. The following environmental changes were made: replaced room name and number plate room signs with photos that were enlarged, enhanced with a colorful border, framed, and hung on the wall next to the elder’s bedroom doorway; furniture was rearranged to increase resident activity participation; wayfinding signage and cues were created; wayfinding cues (large colorful themed decals) were placed at the entrance to elder bedroom hallways and new signage was designed and mounted to improve the elders’ ability to find common locations such as their rooms, the dining room and the living room.  Kelly green name tags were implemented for all employees and elders within the community. Name tags were of appropriate type size and font for elders to call both each other and other care partners by name throughout the living community.
Next, all elders’ interests, skills and abilities were documented through a “Life Story Form” which was co-constructed by assisted living employees and the 1st author (Appendix A). After reviewing these forms, 84 different types of activity materials were purchased or created by the authors, with approximately 25 displayed at one time on trays or in containers and placed in the living room bookcases. Signs were created for some of the activities to act as invitations for engagement.  Activities were based on elders’ interests and some examples included flower arranging, sewing, reading, games, sorting, folding laundry, or puzzles. A refreshment station was created to promote the independent consumption of food and drink throughout the day.
In addition, elders’ interests and desires were identified to match each elder with a community role to support purposeful and meaningful living. Prior to the implementation of the program, none of the elders had a community role. Possible community roles included wiping down tables and chairs after meals, garden caretaker, delivering cards, setting tables, passing out waters, serving appetizers, folding bulletins, visiting other residents, writing the menu for lunch and supper, playing the piano for sing a longs and bible study, delivering mail, volunteering in the mini mart volunteer, creating art with a fellow resident. Families and staff were also instructed, via a workshop on making memory books, to support both conversation and activities of daily living.
Weekly coaching calls that ranged in time from 30 minutes to 120 minutes were conducted with the first author and the Life enrichment staff for a 1-year period.  These calls were designed to problem solve barriers to program implementation, as described below.

 

Results

Twenty-nine elders participated in the implementation of Montessori for Aging in Dementia had a mean age 89.52 years (SD = 7.17) The majority of participants were female (26/29) and wore glasses (22/29). Most of the participants did not wear hearing aids (23/29). All of the participants spoke English, and one participant was bilingual, also speaking German fluently. All participants passed a conversational screening (8), demonstrating ability to participate in conversation verbally at least at the word level. The majority of participants passed a reading screening (9) (20/29) at a 12-point font, (3/29) at a 16-point font, (2/29) at a 24-point font, and (1/29) at a 36-point font. Three participants did not pass the reading screening due to significant visual challenges; however, these participants were still included in the study as they participated in personalized roles and activities that did not require fine use of vision or visual cues. Participants’ Montreal Cognitive Assessment[10] mean scores were 9.86 out of 30 (SD = 5.71; range = 2 – 25). All employee participants were female, except for one male; 8 were Life care enrichment staff, 3 were nurses, and 11 were care partners.
The first goal of this evaluation was to demonstrate implementation of the MDA program by increasing the adoption of leadership, staff, and environmental features of the program. Table 1 illustrates the pre- and post-scores on the MDA Implementation checklist. Staff and elders were observed, policies and practices were reviewed and the environment was evaluated to determine the degree of implementation of each Montessori program standard. Each standard was rated on a Likert scale reflecting ‘0’ meaning no implementation and ‘4’ meaning fully implemented. Likert scale ratings were then converted to percentages to describe the degree to which the community was enacting the practice: ‘0’ or not at all implemented, 25% implemented; 50% implemented; 75% implemented or 100% or fully implemented.
Upon paired t-tests, significant differences for each aspect of the program (i.e., Leadership (p<.01), Staff (p<.002), and Environment) (p<.04) were demonstrated by comparing pre- and post- program implementation features. Although these data confirm that significant changes were made in all program areas, the implementation percentage scores ranged from 67% to 71% at the end of the study, documenting that the program was less than fully implemented.
The second goal of this program was to increase elder engagement in purposeful activities, improve sense of well-being, improve affect, reduce psychotropic medication use, hospitalizations and falls, and reduce occurrence of elder neuropsychiatric symptoms due to dementia, and thereby, improve perceived quality of life. The frequency of falls, medications, hospitalizations and neuropsychiatric symptoms due to dementia from nursing notes pre- and post-implementation are documented in Table 2. After frequency and then descriptive analysis, none of the paired sample t-test pre-post comparisons were significantly different.  In addition, there were no statistically significant pre-post paired sample t-test differences between the means of the frequency and/or intensity of agitated events as rated by the employees for the elder participants in the study on the Cohen-Mansfield Agitation Inventory (2).

Table 2
Pre- and Post-Implementation frequency of neuropsychiatric symptoms due to dementia, falls, hospitalizations, and medications, Cohen-Mansfield Agitation Inventory

Note:  None of the pre-post comparisons were significantly different.

 

Descriptive analysis of the Observation Measure of Engagement (3) which included subscales of Attention and Attitude, included mean, standard deviation and range of variables. Paired sample T-test comparisons did not reveal any significant changes pre- and post-program implementation. Descriptive analysis of means via a paired sample t-test on the Observed Emotion Rating Scale (4), however, revealed a significant increase in positive emotions from pre-implementation, (M=3.35, SD =1.04) to post-implementation (M=3.97, SD=.76); t(28)=-2.83, p = .009.  Table 3 displays the means pre- and post-program implementation for the observational measures of engagement and affect.  Reliability for each point of observation on these two measures was completed by two independent observers and point-to-point agreement was 80% or greater, with a range of 80% to 100% agreement.  In addition, 15 out of 29 elders had a purposeful community role post program implementation.

Table 3
Pre- and Post-Implementation scores on the Observed Measure of Engagement3 and the Observed Emotion Affect Scale4

Note:  * p<.01

 

The Dementia Quality of Life Scale (5) captured significant positive outcomes from pre-program implementation to post-program implementation in the areas of self-esteem, positive affect and belonging. These mean data are further displayed in Table 4 and results of paired t-tests reveal the following significant differences for self-esteem, positive affect, and belonging respectively, t(28)=-4.21, p = .000; t(28)=-2.45, p=.017; t(28)=-5.03, p=.000. Significant changes were not, however, noted in negative affect or aesthetics.

Table 4
Pre- and post-implementation scores on the Dementia quality of life scale5

Note:  * p<.01; **p<.001

 

Descriptive analysis of the job satisfaction survey in terms of means, standard deviations and range of responses was also conducted. Staff displayed statistically significantly higher job satisfaction (6) from pre-implementation (M=1.56, SD =.32) to post-implementation (M=2.04, SD=.5); t(20)=-3.4, p = .003 according to paired sample t-tests.

 

Discussion

The purpose of this study was to evaluate the implementation of the MDA program in an assisted living facility and document elders’ and staff outcomes.  After 1 year, the community had adopted 68% of program features compared to 28% at study start. This represents statistically significant improvements in each area of the AMI MDA program, Leadership, Staff, and Environment.   One very critical barrier to implementation was the lack of a large, cohesive, multidisciplinary team to lead and sustain this initiative.  During the project, the community experienced higher than typical staff turnover for their community, which resulted in lower than normal staffing levels.  Nursing management worked overtime as caregivers to meet the basic needs of the elders. This meant that nursing management and front-line nursing staff were not available for the Montessori team meetings.  In addition, there was turnover in the Life Enrichment department, so this department also operated with less than normal staffing for several months.  A new Life Enrichment assistant needed to be trained in the middle of the project.  The dietary department was also negatively affected by turnover, which made it difficult to collaborate with this department and incorporate aspects of the Montessori program at meal times.  These staffing challenges made it problematic to both implement and sustain the Montessori program because staff were focused on addressing the immediate care issues of the elders; there was limited time for helping the elders to learn how to engage in new and different types of activities.  As a result, the bulk of the program responsibilities were managed by the Life Enrichment Specialist and the Director of Dementia Care Services.
It should be noted that in comparison to other communities that have implemented a Montessori-based approach11, this project measured the program features implemented via a fidelity measure, the MDA Implementation Checklist.  It is important for future programs to document the fidelity of their implementation in order to be able to compare across studies and to better understand the relative importance of specific program features.
With the documented level of implementation at 68%, elders in this study responded to the changes implemented by displaying significantly more positive emotions, affect, and feelings of self-esteem and belonging after the intervention.  These quality of life improvements may be related to a variety of changes made to the environment, the increase in activities and roles, and the behaviors of the staff as a result of their training. Future studies will need to evaluate the relative importance of these different feature changes; the current study was not designed to do a components/feature analysis.  Although positive trends were documented for increased engagement, the fact that the program was not fully implemented may explain the lack of significant differences in engagement by elders. The fact that only 15 of the 29 elders were engaged in a community role at the end of the project suggests that additional staff training may be necessary to support these roles.
It is important to note that there were no statistically significant changes in the variables that have been reported to change in other Montessori programs (11).  Desired reductions in medication use, falls, hospitalizations, and neuropsychiatric symptoms due to dementia were not documented, possibly due to the fact that the frequency of these instances was relatively low, with the exception of medications, at the start of the study.  An additional rationale for this result may include the lack of statistical power due to decreased sample size.
Overall, employee job satisfaction was higher after the implementation of the program; the staff who participated in the training and witnessed changes in the elders reported a greater degree of job satisfaction.  The persistent challenges of short-staffing and staff turnover may have interfered with staff fully implementing the program and thereby not experiencing the potential benefits of the program.

 

Conclusions

Overall this study documents the value of a person-centered, Montessori-based approach to the care of elders with dementia and other conditions of aging.  Implementation of specific leadership, staff, and environmental features leads to changes in the quality of life and affect of individuals with dementia and in the job satisfaction of the staff employed to care for them. Future documentation of the full implementation of this MDA approach has the potential to change significantly the culture of care and quality of life outcomes of persons with dementia.

 

Funding sources: This work was supported by the State of Michigan Health Endowment Fund and Blue Cross Blue Shield of Michigan Foundation.  The sponsors had no role in the design and conduct of the study; in the collection, analysis, and interpretation of data; in the preparation of the manuscript; or in the review or approval of the manuscript.

Conflict of Interest: Ms. Brush reports personal fees from Clark Retirement Community during the conduct of the study; personal fees as Owner, Brush Development, outside the submitted work; and serves as a volunteer member of the Association Montessori International Advisory Board for Montessori for Dementia and Aging. Dr. Douglas reports personal fees from Brush Development, during the conduct of the study. Dr. Bourgeois reports personal fees from Brush Development Company during the conduct of the study; and serves as a volunteer member of the Association Montessori International Advisory Board for Montessori for Dementia and Aging.

Ethical Standard: The Institutional Review Board of Ideas Institute approved all study procedures and consent forms. An introductory letter and consent form was sent to the person holding durable power of attorney for each elder in the community.  A simplified assessment to participate was given to all elder participants.  No baseline data was taken until after receipt both of the signed power of attorney consent form and signed participant assent. Both documents were kept by the lead researcher in a secure location.

 

References

1.    Association Montessori Internationale.  Advisory Group Charter, Quality Areas, Standards and Indicators. Amsterdam, Netherlands: Author, 2015
2.    Cohen-Mansfield, J., Marx, M., & Rosenthal, A. A description of agitation in a nursing home. Journals of Gerontology, 1989;44(3), M77-M84.
3.    Cohen-Mansfield, Ph.D., J. Maha Dakheel-Ali, M., &  Marx, M.S. Engagement in persons with dementia: the concept and its measurement.  Am J Geriatr Psychiatry. 2009; Apr; 17(4): 299–307.
4.    Lawton, M.P., Van Haitsma, K.S., & Klapper, J.A.  Observed Affect in Nursing Home Residents.  Journals of Gerontology B: Psychological Sciences, 1996;51:1, 3-14.
5.    Brod, M, Stewart, A.L., Sands, L., & Walton, P. Conceptualization and Measurement of Quality of Life in Dementia: The Dementia Quality of Life Instrument (DQoL) The Cerontologist, 1999; Vol. 39, No. 1, 25-35.
6.    Kiefer, K, Harris-Kojetin, L. Brannon, D, Barry, T., Vasey, J.& Lepore, J. Measuring LONG-TERM CARE WORK:A Guide to Selected Instruments to Examine Direct Care Worker Experiences and Outcomes. US Department of Health & Human Services, Office of the Assistant Secretary for Planning & Evaluation, US Department of Labor, Office of the Assistant Secretary for Policy, 2005, Appendix 3, page 60S.
7.    Camp, C. J., Bourgeois, M. S., & Erkes, J. Person-centered care. In G. Smith (Ed.) APA Handbook of Dementia (pp. 615-629). American Psychological Association: Washington, D.C, 2018.
8.    Bourgeois, M., Dijkstra, K., Burgio, L., & Allen-Burge, R. Memory aids as an AAC strategy for nursing home residents with dementia.  Augmentative and Alternative Communication, 2001;17, 196-210.
9.    Benigas, J., Brush, J. & Elliot, G. Reading Screening in Spaced Retrieval Step by Step.  Baltimore, MD: Heath Professions Press, pages 2016;40-41.
10.    Nasreddine ZS1, Phillips NA, Bédirian V, Charbonneau S, Whitehead V, Collin I, Cummings JL, Chertkow H. The Montreal Cognitive Assessment, MoCA: a brief screening tool for for mild cognitive impairment. J Am Geriatr Soc. 2005; 53:695-699
11.    Bourgeois, M., Brush, J., Elliot, G., & Kelly, A. Join the Revolution:  How Montessori for Aging and Dementia can change long-term care culture. Seminars in Speech & Language, 2015;36(3), 209-214

IMPLEMENTATION OF THE MONTESSORI PROGRAM IN ASSISTED LIVING: POSITIVE OUTCOMES AND CHALLENGES

 

J. Brush1, N. Douglas2, M. Bourgeois3

 

1. Brush Development, Chardon, OH, USA; 2. Central Michigan University, Mount Pleasant, MI, USA; 3. University of South Florida, Tampa, FL, USA.  Corresponding author: Jennifer Brush, Brush Development, 9935 Campton Ridge Drive, Chardon, OH 44024, jennifer@BrushDevelopment.com, 440-289-0037

 

Jour Nursing Home Res 2018;4:42-48
Published online October 18, 2018, http://dx.doi.org/10.14283/jnhrs.2018.8

 


Abstract

The purpose of this study was to evaluate the impact of the implementation of the Association Montessori Internationale (AMI) Montessori for Dementia and Aging (1) (MDA) program in a memory care Assisted Living community. A pre-post quasi experimental descriptive study was conducted with 29 elders in an assisted living community. The AMI MDA program1 was implemented over the course of one year; adoption of program features was documented pre- and post-implementation. Outcomes for elders included number of neuropsychiatric symptoms due to dementia (Cohen-Mansfield Agitation Inventory (2)), falls, medications and hospitalizations; attitude, attention and engagement (Observational Measure of Engagement (3)), affect (Observed Emotion Rating Scale (4)); and the Dementia Quality of Life Scale (5). The Benjamin Rose Nurse Assistant Job Satisfaction Scale (6) was used to measure employee job satisfaction before and after implementation of the program. After 1 year, the community had adopted 68% of program features compared to 28% at study start. Elders displayed significantly more positive emotions, affect, and feelings of self-esteem and belonging after the intervention; positive trends were documented for increased engagement. Overall, employee job satisfaction was higher after the implementation of the program; barriers to full implementation, however, were identified.

Key words: Montessori, aging, dementia, assisted living.


 

Introduction

A new person-centered approach for long-term care and aging in place communities, AMI Montessori for Dementia and Aging (1) extends the tenets of person-centered care by focusing on the abilities, needs, interests, and strengths of persons with dementia. This innovative team approach creates worthwhile and meaningful roles, routines, and activities for the person within a supportive physical environment. Montessori’s philosophy was to enable persons to be as independent as possible, to have a meaningful place in their community, to possess high self-esteem, and to have the chance to make meaningful contributions to their community. The purpose of this study was to evaluate the impact of the implementation of the AMI MDA (1) program on elder and staff outcomes in a memory care Assisted Living community. The AMI MDA program was created based on the pedagogical philosophy of Dr. Maria Montessori and evidenced based person-centered approaches (7) to dementia care.  The merging of the two disciplines results in a person-centered approach to life that addresses the cognitive, physical, spiritual, social and emotional needs of elders and those living with dementia. This approach facilitates changes to the way one interrelates with elders and people with dementia by improving the quality of interactions.  The goal of the program was to form and maintain a caring community that is aligned with elders’ needs, interests, and abilities by creating an environment that is carefully prepared to provide opportunities for success, choice, enhanced independence and self-initiated activity. Elders’ lives are therefore enriched through the engagement in roles, routines and activities, fostering a sense of community belonging and well-being.
The AMI Montessori for Dementia and Aging Advisory Board has established standards and quality indicators for the application of Montessori in an aged care setting (1).  The standards address three critical areas of program implementation: leadership; staff; and the prepared environment.  In a community that has fully implemented this philosophy, the organizsation’s leadership encourages elders to be actively involved in the decision making related to daily life.  Multi-disciplinary teams are created, with a commitment to working together, with the purpose of meeting the needs of each person in their care.  In addition, the organization’s leadership uses effective communication tools to give staff, families, and elders a full understanding about the Montessori approach. There are financial commitments to budget allocations for best practice resources and staff training is conducted by a certified AMI Montessori for Dementia and Aging Educator. There is a formal commitment to continuous improvement of the implementation of MDA.  For instance, staff collect, maintain and use a comprehensive individual profile of needs, interests and strengths. Through collaboration with elders and their families, staff actively seek out and create opportunities for elders to act independently, exercise choice, move about with freedom and engage in activities of interest. Throughout the day, observation is utilized as a key tool for reflection and identification of individual needs. The environment must be visually organized and aesthetically pleasing. Shared spaces in the care community must provide enticement to engage by having dedicated, interactive areas allocated for activities. A Montessori community has evidenced-based cues and modifications in the environment to support independence. The environment should offer a full complement of appropriate multisensory materials, resources and activities that are accessible at any time.

Study Purpose

The purpose of this project was to implement and evaluate the AMI MDA program in a memory care Assisted Living community.  The program had the following goals:
1. Demonstrate implementation of the MDA program by increasing the adoption of environmental, staff, and leadership features of the program.
2. Increase elder engagement in purposeful activities, improve sense of well-being, improve affect, reduce psychotropic medication use, hospitalizations and falls, and reduce occurrence of neuropsychiatric symptoms due to dementia.
3. Increase staff job satisfaction.

 

Methods

The Institutional Review Board of Ideas Institute approved all study procedures and consent forms. This study utilized a pre-post, quasi-experimental design to implement and evaluate outcomes of the MDA program in one Midwestern assisted living in the United States. The assisted living is part of a non-profit continuing care retirement community housed on two campuses that includes independent and assisted living as well as skilled nursing.  The assisted living area contains 42 private bedrooms and shared activity, dining and living room spaces.

Participants

Study participants were (1) 29 elders with dementia or other cognitive impairment who resided in the community and (2) 22 employees of the assisted living community. An introductory letter and consent form was sent to the person holding durable power of attorney for each elder in the community.  After receipt of the signed consent form, the authors reviewed the elder’s medical chart; completed a communication, cognitive and reading screening of the elder; conducted an observation during their daily activities; and completed the quality of life assessment. Participants who were employees of the assisted living community provided informed consent to complete the following: 1) a job satisfaction survey (6); and 2) a rating of the elder’s neuropsychiatric symptoms (2) throughout the course of 2-weeks.

Measures

Measures used to collect data from participants who were elders with dementia or other cognitive impairment included: 1) chart review confirming diagnosis of dementia or other cognitive impairment; frequency of hospitalizations, falls, neuropsychiatric symptoms due to dementia and medications per nursing notes in the six months before and 3 months after implementation of the program; 2) informal communication screening (8)) and reading screening (9)) ; 3) the Montréal Cognitive Assessment  (MoCA) (10); 4) the Observational Measure of Engagement (3); 5) the Observed Emotion Rating Scale (4)); and, 6) the Dementia Quality of Life Scale (5). Employee participants completed the Benjamin Rose Nurse Satisfaction Survey (6), and the Cohen-Mansfield Agitation Inventory (2) for elder participants in the study. Lastly, a program implementation checklist adapted from AMI MDA standards (Table 1) was also completed to assess program fidelity and measure specific elements of program implementation. All of these measures with the exception of the informal communication screening, reading screening and MoCA were re-administered post- implementation and are described in more detail below.

Table 1
Montessori for Aging and Dementia Program Implementation Checklist

 

After informed consent was completed, the second author reviewed each participant’s medical record to confirm diagnosis of cognitive impairment or dementia related disorder. The number of current medications, falls and hospitalizations was also recorded in the prior 6 months pre-implementation (6-months prior to implementation month 1) and at 3- months post-implementation. Finally, nursing notes were reviewed by the second author to assess frequency of neuropsychiatric symptoms due to dementia in the prior 6 months pre-implementation (6-months prior to implementation month 1) and at 3-months post-implementation. Neuropsychiatric symptoms due to dementia were defined as events that were significant enough for the nursing staff to record in a log and included violence toward other elders, inappropriate sexual advances toward other elders and verbal lashing out toward care partners.
The informal communication screening (8) was administered to each elder as well. The participant was asked his or her age, primary language, and they were observed as to whether or not they had glasses and/or hearing aids. During this process, elders were asked to about their education, hobbies, former occupation, likes and dislikes. The researchers observed conversational features of the elder including the ability to maintain topic, to initiate new topics, to request clarification, to take turns and ask questions. Researchers also noted if the elder was verbal at the single word, short phrase, few sentences or many sentences level. A reading screening was then conducted with each elder (9). Elders were assessed according to the optimal font for oral reading and reading for following simple, 1-step directions.
The MoCA (10) was completed with each elder for descriptive purposes only. The MoCA is a well-studied cognitive screener assessing visuospatial and executive functioning, naming, memory, attention, language, abstraction, delayed recall and orientation. Normal cognitive functioning is considered to be a score of 26 or higher out of 30 possible points, adding an additional point for any individuals who have 12 years of education or less.

The Observational Measure of Engagement (3) involved the investigators rating each elder according to ‘Attention’ and ‘Attitude’ during a 5-minute observation of the elder during an activity. Attention was rated on a 4 point Likert scale where 1 corresponds to ‘not attentive’ and 4 corresponds to ‘very attentive’. Attitude was ranked on a 7 point Likert scale, ranging from 1 (very negative) to 7 (very positive). Inter-rater reliability for this measure was reported to be 84% for engagement outcome measures (3).
The Observed Emotion Rating Scale (4) was completed for each elder as well. The investigators ranked elders according to their facial affect and other qualities that display either negative emotions or positive emotions. The maximum score for the display of both positive and negative emotions is 5, corresponding to the idea that the participant strongly displays that emotion. The minimum score for the display of both positive and negative emotions is 1, corresponding to the idea that the participant never displays that emotion. Kappa reliability for each of these emotion ratings was reported to be .76 or higher and validity, and validity estimates were also deemed supportive of the measure.
The Dementia Quality of Life Scale (5) is a self-report measure of 5-constructs of quality of life: positive affect, negative affect, feelings of self-esteem, feelings of belonging, and experience of aesthetics. Visual supports, including a 24-point type size rating scale and captioned pictures representing the topic of the questions, were used to support communication during the administration of this measure. Internal consistency of all constructs was reported to be .67 or higher
The Benjamin Rose Nurse Assistant Job Satisfaction Scale (6) was administered as a measure of job satisfaction before and after implementation of the program. A score of 0 reflects a highly dissatisfied employee and a score of 3 reflects a highly satisfied employee. This measure has been shown to demonstrate appropriate validity and reliability of .92 (6).
The Cohen-Mansfield Agitation Inventory (2) was completed by employee participants for all participants at pre-and post-implementation of the program. Familiar staff rated levels of agitation for 29 types of physical and verbal aggressive and non-aggressive behavior. While there are subscales to this measure, for the purposes of this study, participants were given an overall agitation score, ranging from 150 (maximum agitation) to 29 (minimum agitation). Cronbach’s alpha for this measure was reported to be .86, .91 and .87 for raters (2).
A Program Implementation Checklist adapted from the AMI MDA standards was developed to record the frequency of the program features/standards in place before and after the program was implemented.  As shown in Table 1, three standards areas were assessed: Leadership (7 features), Staff (9 features) and Prepared Environment (6 features), for a total of 88 required components of a fully implemented program. Each feature was observed to be:  0=Not at all implemented; 1=started to be implemented; 2=moderately implemented; 3=mostly implemented; 4=fully implemented.

Data Analysis

All raw data was entered into Microsoft Excel and later SPSS 24. Descriptive data analysis of all variables included means, standard deviations and ranges of responses. Pre-post and paired sample t-test comparisons were conducted as appropriate.

Implementation of Montessori Program Procedures

After obtaining consent for the elder participants, and collecting the pre-implementation measures the project began with a two-day educational workshop by the first author; 80% of the care partners, nurses, and other life enrichment staff who worked in the care area attended the workshop (8 Life care enrichment staff, 3 nurses, and 11 care partners, respectively). The didactic, interactive presentation included hands on practice with Montessori materials. A team was then created to lead the Montessori initiative within the community. This team, in collaboration with the first author, identified barriers to participation and needed environmental cues to support the Montessori activities. The following environmental changes were made: replaced room name and number plate room signs with photos that were enlarged, enhanced with a colorful border, framed, and hung on the wall next to the elder’s bedroom doorway; furniture was rearranged to increase resident activity participation; wayfinding signage and cues were created; wayfinding cues (large colorful themed decals) were placed at the entrance to elder bedroom hallways and new signage was designed and mounted to improve the elders’ ability to find common locations such as their rooms, the dining room and the living room.  Kelly green name tags were implemented for all employees and elders within the community. Name tags were of appropriate type size and font for elders to call both each other and other care partners by name throughout the living community.
Next, all elders’ interests, skills and abilities were documented through a “Life Story Form” which was co-constructed by assisted living employees and the 1st author (Appendix A). After reviewing these forms, 84 different types of activity materials were purchased or created by the authors, with approximately 25 displayed at one time on trays or in containers and placed in the living room bookcases. Signs were created for some of the activities to act as invitations for engagement.  Activities were based on elders’ interests and some examples included flower arranging, sewing, reading, games, sorting, folding laundry, or puzzles. A refreshment station was created to promote the independent consumption of food and drink throughout the day.
In addition, elders’ interests and desires were identified to match each elder with a community role to support purposeful and meaningful living. Prior to the implementation of the program, none of the elders had a community role. Possible community roles included wiping down tables and chairs after meals, garden caretaker, delivering cards, setting tables, passing out waters, serving appetizers, folding bulletins, visiting other residents, writing the menu for lunch and supper, playing the piano for sing a longs and bible study, delivering mail, volunteering in the mini mart volunteer, creating art with a fellow resident. Families and staff were also instructed, via a workshop on making memory books, to support both conversation and activities of daily living.
Weekly coaching calls that ranged in time from 30 minutes to 120 minutes were conducted with the first author and the Life enrichment staff for a 1-year period.  These calls were designed to problem solve barriers to program implementation, as described below.

 

Results

Twenty-nine elders participated in the implementation of Montessori for Aging in Dementia had a mean age 89.52 years (SD = 7.17) The majority of participants were female (26/29) and wore glasses (22/29). Most of the participants did not wear hearing aids (23/29). All of the participants spoke English, and one participant was bilingual, also speaking German fluently. All participants passed a conversational screening (8), demonstrating ability to participate in conversation verbally at least at the word level. The majority of participants passed a reading screening (9) (20/29) at a 12-point font, (3/29) at a 16-point font, (2/29) at a 24-point font, and (1/29) at a 36-point font. Three participants did not pass the reading screening due to significant visual challenges; however, these participants were still included in the study as they participated in personalized roles and activities that did not require fine use of vision or visual cues. Participants’ Montreal Cognitive Assessment (10) mean scores were 9.86 out of 30 (SD = 5.71; range = 2 – 25). All employee participants were female, except for one male; 8 were Life care enrichment staff, 3 were nurses, and 11 were care partners.
The first goal of this evaluation was to demonstrate implementation of the MDA program by increasing the adoption of leadership, staff, and environmental features of the program. Table 1 illustrates the pre- and post-scores on the MDA Implementation checklist. Staff and elders were observed, policies and practices were reviewed and the environment was evaluated to determine the degree of implementation of each Montessori program standard. Each standard was rated on a Likert scale reflecting ‘0’ meaning no implementation and ‘4’ meaning fully implemented. Likert scale ratings were then converted to percentages to describe the degree to which the community was enacting the practice: ‘0’ or not at all implemented, 25% implemented; 50% implemented; 75% implemented or 100% or fully implemented.
Upon paired t-tests, significant differences for each aspect of the program (i.e., Leadership (p<.01), Staff (p<.002), and Environment) (p<.04) were demonstrated by comparing pre- and post- program implementation features. Although these data confirm that significant changes were made in all program areas, the implementation percentage scores ranged from 67% to 71% at the end of the study, documenting that the program was less than fully implemented.
The second goal of this program was to increase elder engagement in purposeful activities, improve sense of well-being, improve affect, reduce psychotropic medication use, hospitalizations and falls, and reduce occurrence of elder neuropsychiatric symptoms due to dementia, and thereby, improve perceived quality of life. The frequency of falls, medications, hospitalizations and neuropsychiatric symptoms due to dementia from nursing notes pre- and post-implementation are documented in Table 2. After frequency and then descriptive analysis, none of the paired sample t-test pre-post comparisons were significantly different.  In addition, there were no statistically significant pre-post paired sample t-test differences between the means of the frequency and/or intensity of agitated events as rated by the employees for the elder participants in the study on the Cohen-Mansfield Agitation Inventory (2).

Table 2
Pre- and Post-Implementation frequency of neuropsychiatric symptoms due to dementia, falls, hospitalizations, and medications, Cohen-Mansfield Agitation Inventory

Note:  None of the pre-post comparisons were significantly different.

 

Descriptive analysis of the Observation Measure of Engagement (3) which included subscales of Attention and Attitude, included mean, standard deviation and range of variables. Paired sample T-test comparisons did not reveal any significant changes pre- and post-program implementation. Descriptive analysis of means via a paired sample t-test on the Observed Emotion Rating Scale (4), however, revealed a significant increase in positive emotions from pre-implementation, (M=3.35, SD =1.04) to post-implementation (M=3.97, SD=.76); t(28)=-2.83, p = .009.  Table 3 displays the means pre- and post-program implementation for the observational measures of engagement and affect.  Reliability for each point of observation on these two measures was completed by two independent observers and point-to-point agreement was 80% or greater, with a range of 80% to 100% agreement.  In addition, 15 out of 29 elders had a purposeful community role post program implementation.

Table 3
Pre- and Post-Implementation scores on the Observed Measure of Engagement3 and the Observed Emotion Affect Scale4

Note:  * p<.01

 

The Dementia Quality of Life Scale (5) captured significant positive outcomes from pre-program implementation to post-program implementation in the areas of self-esteem, positive affect and belonging. These mean data are further displayed in Table 4 and results of paired t-tests reveal the following significant differences for self-esteem, positive affect, and belonging respectively, t(28)=-4.21, p = .000; t(28)=-2.45, p=.017; t(28)=-5.03, p=.000. Significant changes were not, however, noted in negative affect or aesthetics.
Descriptive analysis of the job satisfaction survey in terms of means, standard deviations and range of responses was also conducted. Staff displayed statistically significantly higher job satisfaction (6) from pre-implementation (M=1.56, SD =.32) to post-implementation (M=2.04, SD=.5); t(20)=-3.4, p = .003 according to paired sample t-tests.

Table 4
Pre- and post-implementation scores on the Dementia quality of life scale5

Note:  * p<.01; **p<.001

 

Discussion

The purpose of this study was to evaluate the implementation of the MDA program in an assisted living facility and document elders’ and staff outcomes.  After 1 year, the community had adopted 68% of program features compared to 28% at study start. This represents statistically significant improvements in each area of the AMI MDA program, Leadership, Staff, and Environment.   One very critical barrier to implementation was the lack of a large, cohesive, multidisciplinary team to lead and sustain this initiative.  During the project, the community experienced higher than typical staff turnover for their community, which resulted in lower than normal staffing levels.  Nursing management worked overtime as caregivers to meet the basic needs of the elders. This meant that nursing management and front-line nursing staff were not available for the Montessori team meetings.  In addition, there was turnover in the Life Enrichment department, so this department also operated with less than normal staffing for several months.  A new Life Enrichment assistant needed to be trained in the middle of the project.  The dietary department was also negatively affected by turnover, which made it difficult to collaborate with this department and incorporate aspects of the Montessori program at meal times.  These staffing challenges made it problematic to both implement and sustain the Montessori program because staff were focused on addressing the immediate care issues of the elders; there was limited time for helping the elders to learn how to engage in new and different types of activities.  As a result, the bulk of the program responsibilities were managed by the Life Enrichment Specialist and the Director of Dementia Care Services.
It should be noted that in comparison to other communities that have implemented a Montessori-based approach11, this project measured the program features implemented via a fidelity measure, the MDA Implementation Checklist.  It is important for future programs to document the fidelity of their implementation in order to be able to compare across studies and to better understand the relative importance of specific program features.
With the documented level of implementation at 68%, elders in this study responded to the changes implemented by displaying significantly more positive emotions, affect, and feelings of self-esteem and belonging after the intervention.  These quality of life improvements may be related to a variety of changes made to the environment, the increase in activities and roles, and the behaviors of the staff as a result of their training. Future studies will need to evaluate the relative importance of these different feature changes; the current study was not designed to do a components/feature analysis.  Although positive trends were documented for increased engagement, the fact that the program was not fully implemented may explain the lack of significant differences in engagement by elders. The fact that only 15 of the 29 elders were engaged in a community role at the end of the project suggests that additional staff training may be necessary to support these roles.
It is important to note that there were no statistically significant changes in the variables that have been reported to change in other Montessori programs (11).  Desired reductions in medication use, falls, hospitalizations, and neuropsychiatric symptoms due to dementia were not documented, possibly due to the fact that the frequency of these instances was relatively low, with the exception of medications, at the start of the study.  An additional rationale for this result may include the lack of statistical power due to decreased sample size.
Overall, employee job satisfaction was higher after the implementation of the program; the staff who participated in the training and witnessed changes in the elders reported a greater degree of job satisfaction.  The persistent challenges of short-staffing and staff turnover may have interfered with staff fully implementing the program and thereby not experiencing the potential benefits of the program.

 

Conclusions

Overall this study documents the value of a person-centered, Montessori-based approach to the care of elders with dementia and other conditions of aging.  Implementation of specific leadership, staff, and environmental features leads to changes in the quality of life and affect of individuals with dementia and in the job satisfaction of the staff employed to care for them. Future documentation of the full implementation of this MDA approach has the potential to change significantly the culture of care and quality of life outcomes of persons with dementia.

 

Funding sources: This work was supported by the State of Michigan Health Endowment Fund and Blue Cross Blue Shield of Michigan Foundation.  The sponsors had no role in the design and conduct of the study; in the collection, analysis, and interpretation of data; in the preparation of the manuscript; or in the review or approval of the manuscript.

Conflict of Interest: Ms. Brush reports personal fees from Clark Retirement Community during the conduct of the study; personal fees as Owner, Brush Development, outside the submitted work; and serves as a volunteer member of the Association Montessori International Advisory Board for Montessori for Dementia and Aging. Dr. Douglas reports personal fees from Brush Development, during the conduct of the study. Dr. Bourgeois reports personal fees from Brush Development Company during the conduct of the study; and serves as a volunteer member of the Association Montessori International Advisory Board for Montessori for Dementia and Aging.

Ethical Standard: The Institutional Review Board of Ideas Institute approved all study procedures and consent forms. An introductory letter and consent form was sent to the person holding durable power of attorney for each elder in the community.  A simplified assessment to participate was given to all elder participants.  No baseline data was taken until after receipt both of the signed power of attorney consent form and signed participant assent. Both documents were kept by the lead researcher in a secure location.

 

References

1.    Association Montessori Internationale.  Advisory Group Charter, Quality Areas, Standards and Indicators. Amsterdam, Netherlands: Author, 2015
2.    Cohen-Mansfield, J., Marx, M., & Rosenthal, A. A description of agitation in a nursing home. Journals of Gerontology, 1989;44(3), M77-M84.
3.    Cohen-Mansfield, Ph.D., J. Maha Dakheel-Ali, M., &  Marx, M.S. Engagement in persons with dementia: the concept and its measurement.  Am J Geriatr Psychiatry. 2009; Apr; 17(4): 299–307.
4.    Lawton, M.P., Van Haitsma, K.S., & Klapper, J.A.  Observed Affect in Nursing Home Residents.  Journals of Gerontology B: Psychological Sciences, 1996;51:1, 3-14.
5.    Brod, M, Stewart, A.L., Sands, L., & Walton, P. Conceptualization and Measurement of Quality of Life in Dementia: The Dementia Quality of Life Instrument (DQoL) The Cerontologist, 1999; Vol. 39, No. 1, 25-35.
6.    Kiefer, K, Harris-Kojetin, L. Brannon, D, Barry, T., Vasey, J.& Lepore, J. Measuring LONG-TERM CARE WORK:A Guide to Selected Instruments to Examine Direct Care Worker Experiences and Outcomes. US Department of Health & Human Services, Office of the Assistant Secretary for Planning & Evaluation, US Department of Labor, Office of the Assistant Secretary for Policy, 2005, Appendix 3, page 60S.
7.    Camp, C. J., Bourgeois, M. S., & Erkes, J. Person-centered care. In G. Smith (Ed.) APA Handbook of Dementia (pp. 615-629). American Psychological Association: Washington, D.C, 2018.
8.    Bourgeois, M., Dijkstra, K., Burgio, L., & Allen-Burge, R. Memory aids as an AAC strategy for nursing home residents with dementia.  Augmentative and Alternative Communication, 2001;17, 196-210.
9.    Benigas, J., Brush, J. & Elliot, G. Reading Screening in Spaced Retrieval Step by Step.  Baltimore, MD: Heath Professions Press, pages 2016;40-41.
10.    Nasreddine ZS1, Phillips NA, Bédirian V, Charbonneau S, Whitehead V, Collin I, Cummings JL, Chertkow H. The Montreal Cognitive Assessment, MoCA: a brief screening tool for for mild cognitive impairment. J Am Geriatr Soc. 2005; 53:695-699
11.    Bourgeois, M., Brush, J., Elliot, G., & Kelly, A. Join the Revolution:  How Montessori for Aging and Dementia can change long-term care culture. Seminars in Speech & Language, 2015;36(3), 209-214

REHABILITATION CARE AFTER HIP FRACTURE IN OLDER PATIENTS WITH COGNITIVE IMPAIRMENT: SYSTEMATIC REVIEW

 

T. Krams, C. Lafont, T. Voisin, A. Castex, M. Houles, Y. Rolland

Gérontopôle of Toulouse, University of Toulouse III, CHU Purpan, Toulouse, France. Corresponding author: : Thomas Krams, 170 Avenue de Casselardit, 31 000 Toulouse France,
+33 5 61 77 66 73, krams.t@chu-toulouse.fr

 

Jour Nursing Home Res 2018;4:27-35
Published online July 3, 2018, http://dx.doi.org/10.14283/jnhrs.2018.6

 


Abstract

Background/Objectives: Hip fractures (HF) are frequent in older adults. A substantial number of cognitively impaired patients are admitted to rehabilitation units, where they will receive the same care program as non-impaired patients. The aims of this literature review are to describe the results of short-, medium- and long-term rehabilitation for cognitively impaired patients. Methods: We conducted a systematic review of French and English articles of human studies in MEDLINE via PubMED with the key words “hip fracture“ AND “rehabilitation” AND “dementia“. In a second step, the references of selected articles were analyzed and a complementary search on Google Scholar was conduct for an exhaustive literature search. We extracted data on the author name, the journal, year of publication, study design, total number of patients and number of cognitively impaired patients, mean patient age, time and modality of the cognitive assessment, inclusion and exclusion criteria, rehabilitation program, and primary endpoint. Results: The initial literature search retrieved 147 articles. 16 reports of studies representing 2,255 patients were selected. Our study reveal that multidisciplinary rehabilitation is possible and permits functional gain that persists in the long-term. The intensity of rehabilitation can be as high as for subjects without cognitive impairment. Characteristics of dementia are prognostic factors of rehabilitation (severity of dementia, profile of dementia). Other accessible factors are malnutrition, depression, family. Conclusion: Concerning patients with cognitive impairment, although our data do not permit establishing recommendations for rehabilitation after HF, some important elements emerged from this review. Additional studies are needed to better define rehabilitation programs adapted to the specificities of the different types of dementia.

Key words: Dementia, cognitive impairment, hip fracture, rehabilitation.


 

Introduction

Hip fractures (HF) are frequent in older adults. In France, the incidence of hip fracture is estimated at about 50,000 per year, most occurring in patients over 65 years old (1,2). This incidence is expected to increase in the coming years (3). With the aging of the population, the combination of cognitive impairment and serious injury with HF is more frequent. A systematic review conducted in 2011 showed that 19.2% of patients hospitalized for HF had a diagnosis of dementia and 41.8% had cognitive impairment (4). The number of impaired patients hospitalized for HF is expected to increase during the next 20 years (5-7). HF represents the most frequent pathology in geriatric rehabilitation units and only 33% to 37% of patients return to their previous capabilities after 6 months. (8-10)
The aim of rehabilitation is to optimize the potential for recovery. However, cognitive alterations are a limiting factor in rehabilitation because patient with dementia appears to have pejorative outcome after hip fracture (11-13). A substantial number of cognitively impaired patients are admitted to rehabilitation units, where they will receive the same care program as non-impaired patients. Therefore, understanding rehabilitation for cognitively impaired patients is needed, as are specific rehabilitation programs to optimize functional gain.
The aims of this literature review are to describe the results of rehabilitation at short-, medium- and long-term after the end of the rehabilitation for cognitively impaired patients concerning functional ability, place of living and duration of hospitalization; describe the most effective rehabilitation program for patients with cognitive impairment; and identify criteria to identify patients with cognitive impairment who are eligible for rehabilitation.

 

Materials and methods

Literature search strategy and inclusion and exclusion criteria
We conducted a systematic review of French and English articles of human studies in MEDLINE via PubMED with the key words “hip fracture“ AND “rehabilitation” AND “dementia”. Articles published until December 12, 2016 were included. Inclusion criteria were as follow:
– Prospective cohort studies
– Studies randomized controlled or not
– Studies evaluated the results of a strategy of rehabilitation in patients with HF who were older than 65 years
– Studies including patients with cognitive impairment (received cognitive assessment)
– And studies comparing the results of 2 strategies of rehabilitation in such patients.
– Studies could compare the outcome of cognitively impaired and intact participant or compare outcome of two rehabilitation strategies in cognitively impaired patient.
Exclusion criteria were:
– Case reports
– Studies that not including patient with cognitive impairment.
The Selection process was made by the first author (TK). We first reviewed the titles and abstracts of all retrieved the articles, then read the full text of potential articles. Selected studies could assess not just patients with cognitive impairment. In a second step, the references of selected articles were analyzed and a complementary search on Google Scholar was conduct for an exhaustive literature search. Finally, we contacted authors of the articles of studies of cognitively impaired patients but without the specific outcomes of interest in their article.

Data extraction

We extracted data on the author name, the journal, year of publication, study design, total number of patients and number of cognitively impaired patients, mean patient age, time and modality of the cognitive assessment, inclusion and exclusion criteria, rehabilitation program, and primary endpoint.
We evaluated the results of the rehabilitation at short, medium and long term after the rehabilitation concerning functional ability, place of living and duration of hospitalization in order describe the most effective rehabilitation program for patients with cognitive impairment; and identify criteria to identify patients with cognitive impairment who are eligible for rehabilitation.

Quality of studies

We evaluated the quality of studies by using a validated scale (Down and Black) (14). This scale has good reproducibility to assess the quality of randomized and non-randomized studies. It evaluates, on 32 levels, 5 areas (establishment of report, external validity, internal validity, bias, power).

 

Results

Selection and characteristics of the studies (Fig. 1 and Table 1)
The initial literature search retrieved 149 articles (Fig. 1). After reading the title and abstract, 124 were eliminated. Among the 23 remaining articles, 6 were included in our review (15-21); 17 were excluded (9,11,15,21–38): 7 concerned not demented patients, 5 concerned not rehabilitation, 2 concerned professional surveys, 2 concerned the description of a protocol (no result available), 1 was not accessible. Overall, 9 articles were detected by a search of references or Google Scholar (39-47). One author provided unpublished data from a study (McGilton et al. (15)). Finally, 16 reports of studies representing 2,255 patients were selected. Number of patients vary between 11 and 319. Mean age vary between 79 and 84.5.
Among the 16 selected articles, 7 described prospective follow-ups of cohorts (17,18,20,21,41–43) studies, and 9 were of randomized studies comparing 2 strategies of rehabilitation (15,16,19,39,40,44–47). Among 7 reports of follow-ups of cohorts, 2 (Giusti (18) and Al-Ani (17)) compared the results of 2 different rehabilitation strategies (home or rehabilitation centre). Other cohort studies followed patients admitted consecutively to one or more rehabilitation services. Outcomes were then compared between patients with and without cognitive impairment.

Figure 1
Flow chart

Table 1
Study characteristics

RCT: randomized controlled trial, I: intervention group; C: control group; ADL: activities of daily living, FIM: functional independence measure, MRFS: Montebello rehabilitation factor score, MMSE: Mini-Mental Status Evaluation, SPMSQ: short portable mental status questionnaire; MDRS: Mattis Dementia Rating Scale; MD: missing data

 

One study (Uy et al.(44)) was interrupted prematurely due to modification of the legislation concerning nursing homes in Australia.
The characteristics and quality of all included studies are in Table 1. The studies were generally of average quality, with scores ranging from 13 to 25 out of a possible 32 points.
The population characteristics of the studies are in Table 2.

Table 2
Characteristicstudy populations

HF, hip fracture

 

Assessment of cognitive status

Different scales were used to assess cognitive disorders (Table 1). Mini Mental Status Evaluation (MMSE) was used in 8 studies, Short Portable Mental Status Questionnaire (SPMSQ) in 6 studies the cognitive part of the functional independence measure in 1 study in association with MMSE and Mattis Dementia Rating Scale (MDRS) in one study, and the assessment method was unknown for one study. For 7 studies, cognitive evaluation was conducted in the week following the fracture.

Functional outcomes

The functional ability scales were also extremely heterogeneous (Table 1). Five studies used activities of daily living (ADL) scales (16,17,39,46,47), and 6 used the functional independence measure (FIM) or its motor part (15,20,21,41–43).

Short-term (< 3 months) Among the 16 articles, 15 reported on functional outcomes with short-term rehabilitation. A longitudinal cohort study revealed that cognitively impaired patients generally had less functional autonomy at the beginning and end of rehabilitation but comparable gain in absolute function value as non-cognitively impaired subjects (20,21,41,42). All work comparing 2 strategies of rehabilitation showed that patients with cognitive impairment could have functional gain improved by a specific geriatric care. Moseley et al. (45) highlighted that the median walking speed was greater for cognitively impaired patients in the intervention than control group (+ 0.2 m/s [range 0.07–0.34], p = 0.003) at 4 months. Medium-term (3–6 months) Six studies comparing 2 rehabilitation strategies gave functional results for the medium term (16,19,40,44,45,47). All indicated that the benefits of a specialized geriatric care were maintained in the medium term because functional ability was better for cognitively impaired patients than controls. Al-Ani et al. (17) showed that the 2 factors related to functional recovery at 4 months were former ADL (odds ratio [OR] = 2.03 [95% CI 1.59–2.58]) and having benefited from rehabilitation (OR = 4.24 [1.61–11.17]). Stenvall et al. (16) showed a higher rate of walking ability at 4 months for impaired patients than controls following a specific rehabilitation (21% vs 3%, p = 0.005). Moseley et al. (45) reported that median 16-week gain in speed was greater in the intervention than control group (+ 0.24 m/sec [range 0.05–0.44], p = 0.015)) Long-term (> 6 months)
Three studies comparing 2 strategies of rehabilitation evaluated the effectiveness of rehabilitation in the long-term (Giusti et al., Al – Ani et al., Stenvall et al.). Positive results in the short- and medium-term seemed to persist in the long-term. In the Al-Ani et al. study (17), the 2 factors associated with functional recovery at 12 months were previous ADL (OR = 2.51 [95% CI 1.80-3.50]) and specific rehabilitation care (OR= 5.53 [1.44-19.65]). Stenvall et al. (16) revealed that more patients in the rehabilitation than control group regained their previous ability (53% vs 21%, p = 0.027).

Place of living

Short-term (< 3 months) The place of living in the short-term was evaluated in 3 studies: one cohort (21) and 2 randomized studies (26, 39). The cohort study found a non-significant increased risk of institutionalization for cognitively impaired versus non-impaired patients (25% vs 54% still living in the community after HF, p = 0.141). Two randomized studies revealed that geriatric rehabilitation increased the chances of returning home for cognitively impaired versus non-impaired patients (73% vs 54% returning home for the intervention and control groups, respectively, Mcgilton et al.(15)). Medium-term (3-6 months) Three randomized studies (16,19,40) evaluated the medium-term outcomes. Huusko et al. (19) reported a higher probability of living at home for patients with moderate (Mini-Mental State Examination [MMSE]= 12-17) and mild (MMSE = 17-23) dementia with than without specific rehabilitation (63% vs 17% and 91% vs 67% for moderate and mild dementia, respectively). Naglie et al. (40) showed a significant difference concerning the place of living for cognitively impaired patients between the usual-rehabilitation and the intervention group. Stenvall et al. (16) showed no difference in residence between the intervention and control group (80% vs 83% of patients with dementia in the geriatric-rehabilitation and usual-rehabilitation group, respectively). In these studies, the information concerning residence before the HF was not indicated. Long-term (> 6 months)
Two studies (15, 19) assessed place of living at 1 year. For Huusko et al. (19), specific rehabilitation could reduce the rate of institutionalization for patients with moderate dementia (MMSE = 12–18) (62% vs 33% of patients living at home in the classic-rehabilitation and intervention group, respectively). This was not the finding for the mildly or severely impaired patients. Stenvall et al. (16) found no difference in residence for cognitively impaired patients with a program.

Length of stay in rehabilitation care

Duration of hospitalization was evaluated in 2 cohort studies and 3 randomized studies. In the cohort studies, length of stay was longer for cognitively impaired than non-impaired patients: + 2 days on average in the Goldstein et al. study (21) and 28.2 ± 13 versus 21.2 ± 9.2 days for impaired versus non-impaired patients (p < 0.001) in the Heruti et al. study (20)).
Three randomized studies showed that duration of hospitalization was shorter in the intervention than control group. In the Kennie et al. study (39), length of stay was shortened by geriatric support for patients with mild, moderate, and severe dementia (25 vs 31 days, 21 vs 61 days and 53 vs 66 days, respectively). In the Huusko et al. study(19), the length of stay was decreased with geriatric rehabilitation only for patients with MMSE 12 to 17 and 18 to 23 (47 vs 147 days, p = 0.042, and 29 vs 46 days, p = 0.002, respectively). In the Stenvall et al. study (16), although not significant, a specific geriatric rehabilitation decreased the duration of hospitalization (20 ±12 days vs 32.1 ± 35.5 days, p = 0.059).

Description of interventions

Interventions are described in Table 3. The main information provided were location, stakeholders, and intensity. No article accurately described the rehabilitation techniques used. Length of intervention is described only in two articles (Huusko et al. and Mosley et al.).

Table 3
Intervention

 

Factors of the rehabilitation in prognosis

We found several criteria that could influence the results of the rehabilitation after HF in cognitively impaired patients.
1) Severity of dementia: Rolland et al. (23) showed that patients with low FIM at the end of the rehabilitation had the most severe dementia. However, Huusko et al. (17) found that geriatric care was beneficial for patients with moderate dementia (MMSE = 12–18) but not severe dementia (MMSE < 11). In Naglie et al. (21), rehabilitation was more beneficial for patients with mild to moderate than severe dementia. In the Kennie et al. study (20), geriatric care benefitted patients with moderate or severe dementia than beginning dementia.
2) Cognitive profile: Goldstein et al. (19) evaluated the association between the success of rehabilitation and the cognitive altered domain. The preservation of memory (p=0.026), conceptualization (p = 0.003) and initiation/perseverence (p = 0.003) on the Mattis Dementia Rating Scale was associated with improved FIM score at the end of rehabilitation. The preservation of initiation/perseverence and conceptualization was associated with improved FIM during rehabilitation (p = 0.047 and p = 0.031, respectively).
3) Previous autonomy: Autonomy before the HF is an important prognostic factor of functional outcome (11,15,19,23). For example, for Al-Ani et al. (15), the preservation of ADL after rehabilitation in cognitively impaired patients was associated with ADL before the HF (OR= 2.03 [95% CI 1.59-2.58], p < 0.001, at 4 months and 2.51 [1.80-3.50], p < 0.001 at 12 months).
4) Other prognostic factors: previous functional ability (15,23), nutritional status, and the presence of a family (11) and depression (23).

 

Discussion

Few data exist on rehabilitation after HF (48-50). Although HF is frequent among older patients with cognitive impairment, we have few data to optimize the rehabilitation of these patients. Our systematic review included 16 studies of variable quality on this topic. Therefore, the level of evidence presented is limited and conclusions must be formulated carefully.
We found substantial heterogeneity concerning rehabilitation programs investigated as well as the assessment of cognitive impairment, functional ability, the time of the evaluation or the study design, so interpretation of results is complicated. The development of recommendations for the rehabilitation of cognitively impaired patients based on only these data seems impossible.
Concerning the rehabilitation strategy, this review does not allow for defining recommendations and these finding are consistent with the recent Cochrane review (51).
Nevertheless, the following items resulted in positive outcomes in the studies examined:
– Location of program: a geriatric rehabilitation service. Only one study (Giusti) evaluated the effectiveness of the rehabilitation in the patient’s place of living and found positive results.
– Participants: multidisciplinary team of physician geriatrician and therapist, physical therapist, occupational therapist, dietician, neuropsychologist, nurse. Several studies (15, 16, 40) proposed specific training of the medical team in support of older patients. A weekly meeting was proposed in all studies.
– Intensity: Different programs were offered with different levels of intensity, which is broadly comparable to what is generally offered to older patients without cognitive impairment. The intensity is from 2 to 3 hr/day divided into 2 sessions, 5 to 6 days/week.
– Duration: the duration of the rehabilitation is poorly described and actually depends on each situation.
Some factors appear to be able to be associated with the results of the rehabilitation in patients: the severity of dementia (19, 39, 40, 42), type of deficit (21), previous autonomy (17, 21, 31, 42), existence of a depressive syndrome (43), nutritional status and presence of family members (15).
The most appropriate tool for evaluating the results of rehabilitation cannot be determined. The 2 most commonly used scales are the ADL and the FIM. Evaluating effectiveness of rehabilitation of patients with cognitive impairment seems more logical with functional than analytical scales such as range of motion or muscle strength.
The originality of this review is the evaluation of predictive factors of success or failure of rehabilitation. We highlight some factors of success of the rehabilitation after HF.
This study also has limitations. First, given the heterogeneity of the data, very disparate results were found with 9 randomized studies and 7 cohort studies. In addition, data concerning cognitively impaired patients were generally post-hoc analyses of randomized trials. Second, the search and selection of articles involved only one database (MEDLINE), so certain articles may have been missed. Finally, the generalization of the results requires that studies include patients representative of the target population, and the low rate of recruitment of our studies (Table 2) complicated the generalization of the results.

 

Conclusions

Concerning patients with cognitive impairment, although our data do not permit establishing recommendations for rehabilitation after HF, some important elements emerged from this review. Multidisciplinary rehabilitation is possible and permits functional gain that persists in the long-term. Rehabilitation in a non-geriatric unit produces worse outcomes than that in a geriatric rehabilitation unit. The intensity of rehabilitation can be as high as for subjects without cognitive impairment. Characteristics of dementia are prognostic factors of rehabilitation (severity of dementia, profile of dementia). Other accessible factors (malnutrition, depression, family) should be considered to evaluate the prognosis of rehabilitation. Most studies are secondary analysis and concern heterogeneous population which complicated the generalization of the results. Additional studies are needed to better described (type and intensity of exercise, location, category and number of participant, length, objective) rehabilitation programs adapted to the specificities of the different types of dementia.

 

Competing interest: All authors have nothing to disclose

 

References

1. Briot K, Maravic M, Roux C. Changes in number and incidence of hip fractures over 12 years in France. Bone. 2015 Dec;81:131–7.
2. Haute autorité de santé. ÉVALUATION DES PROTHÈSES DE HANCHE. 2007.
3. Johnell O, Kanis JA. An estimate of the worldwide prevalence, mortality and disability associated with hip fracture. Osteoporos Int J Establ Result Coop Eur Found Osteoporos Natl Osteoporos Found USA. 2004 Nov;15(11):897–902.
4. Seitz DP, Adunuri N, Gill SS, Rochon PA. Prevalence of dementia and cognitive impairment among older adults with hip fractures. J Am Med Dir Assoc. 2011 Oct;12(8):556–64.
5. Adunsky A, Lusky A, Arad M, Heruti RJ. A comparative study of rehabilitation outcomes of elderly hip fracture patients: the advantage of a comprehensive orthogeriatric approach. J Gerontol A Biol Sci Med Sci. 2003 Jun;58(6):542–7.
6. Gruber-Baldini AL, Zimmerman S, Morrison RS, Grattan LM, Hebel JR, Dolan MM, et al. Cognitive impairment in hip fracture patients: timing of detection and longitudinal follow-up. J Am Geriatr Soc. 2003 Sep;51(9):1227–36.
7. Maravic M. Epidémiologie des fractures de hanches. Réalités en rhumatologie. 2013 Mar;
8. Magaziner J, Hawkes W, Hebel JR, Zimmerman SI, Fox KM, Dolan M, et al. Recovery from hip fracture in eight areas of function. J Gerontol A Biol Sci Med Sci. 2000 Sep;55(9):M498–507.
9. Seitz DP, Gill SS, Gruneir A, Austin PC, Anderson GM, Bell CM, et al. Effects of dementia on postoperative outcomes of older adults with hip fractures: a population-based study. J Am Med Dir Assoc. 2014 May;15(5):334–41.
10. Morrison RS, Siu AL. A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. J Pain Symptom Manage. 2000 Apr;19(4):240–8.
11. Hedman AM, Grafström M. Conditions for rehabilitation of older patients with dementia and hip fracture–the perspective of their next of kin. Scand J Caring Sci. 2001;15(2):151–8.
12. van Dortmont LM, Douw CM, van Breukelen AM, Laurens DR, Mulder PG, Wereldsma JC, et al. Outcome after hemi-arthroplasty for displaced intracapsular femoral neck fracture related to mental state. Injury. 2000 Jun;31(5):327–31.
13. Bentler SE, Liu L, Obrizan M, Cook EA, Wright KB, Geweke JF, et al. The aftermath of hip fracture: discharge placement, functional status change, and mortality. Am J Epidemiol. 2009 Nov 15;170(10):1290–9.
14. Downs SH, Black N. The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. 1998 Jun;52(6):377–84.
15. McGilton KS, Davis AM, Naglie G, Mahomed N, Flannery J, Jaglal S, et al. Evaluation of patient-centered rehabilitation model targeting older persons with a hip fracture, including those with cognitive impairment. BMC Geriatr. 2013;13:136.
16. Stenvall M, Berggren M, Lundström M, Gustafson Y, Olofsson B. A multidisciplinary intervention program improved the outcome after hip fracture for people with dementia–subgroup analyses of a randomized controlled trial. Arch Gerontol Geriatr. 2012 Jun;54(3):e284–9.
17. Al-Ani AN, Flodin L, Söderqvist A, Ackermann P, Samnegård E, Dalén N, et al. Does Rehabilitation Matter in Patients With Femoral Neck Fracture and Cognitive Impairment? A Prospective Study of 246 Patients. Arch Phys Med Rehabil. 2010 Jan;91(1):51–7.
18. Giusti A, Barone A, Pioli G. Rehabilitation after hip fracture in patients with dementia. J Am Geriatr Soc. 2007 Aug;55(8):1309–10.
19. Huusko TM, Karppi P, Avikainen V, Kautiainen H, Sulkava R. Randomised, clinically controlled trial of intensive geriatric rehabilitation in patients with hip fracture: subgroup analysis of patients with dementia. BMJ. 2000 Nov 4;321(7269):1107–11.
20. Heruti RJ, Lusky A, Barell V, Ohry A, Adunsky A. Cognitive status at admission: Does it affect the rehabilitation outcome of elderly patients with hip fracture? Arch Phys Med Rehabil. 1999 Apr;80(4):432–6.
21. Goldstein FC, Strasser DC, Woodard JL, Roberts VJ. Functional outcome of cognitively impaired hip fracture patients on a geriatric rehabilitation unit. J Am Geriatr Soc. 1997 Jan;45(1):35–42.
22. Horikawa A, Miyakoshi N, Shimada Y, Kodama H. Comparison of activities of daily living after osteoporotic hip fracture surgery in patients admitted from home and from geriatric health service facilities. Clin Interv Aging. 2014;9:1847–51.
23. Tan AK, Taiju R, Menon EB, Koh GC. Postoperated hip fracture rehabilitation effectiveness and efficiency in a community hospital. Ann Acad Med Singapore. 2014 Apr;43(4):209–15.
24. Allen J, Koziak A, Buddingh S, Liang J, Buckingham J, Beaupre LA. Rehabilitation in patients with dementia following hip fracture: a systematic review. Physiother Can Physiothérapie Can. 2012;64(2):190–201.
25. Vochteloo AJH, van Vliet-Koppert ST, Maier AB, Tuinebreijer WE, Röling ML, de Vries MR, et al. Risk factors for failure to return to the pre-fracture place of residence after hip fracture: a prospective longitudinal study of 444 patients. Arch Orthop Trauma Surg. 2012 Jun;132(6):823–30.
26. McGilton KS, Davis A, Mahomed N, Flannery J, Jaglal S, Cott C, et al. An inpatient rehabilitation model of care targeting patients with cognitive impairment. BMC Geriatr. 2012;12:21.
27. Buddingh S, Liang J, Allen J, Koziak A, Buckingham J, Beaupre LA. Rehabilitation for long-term care residents following hip fracture: a survey of reported rehabilitation practices and perceived barriers to delivery of care. J Geriatr Phys Ther 2001. 2013 Mar;36(1):39–46.
28. Cook WL, Khan KM, Bech MH, Brasher PM, Brown RA, Bryan S, et al. Post-discharge management following hip fracture–get you back to B4: a parallel group, randomized controlled trial study protocol. BMC Geriatr. 2011;11:30.
29. Pretto M, Spirig R, Kaelin R, Muri-John V, Kressig RW, Suhm N. Outcomes of elderly hip fracture patients in the Swiss healthcare system: A survey prior to the implementation of DRGs and prior to the implementation ofa Geriatric Fracture Centre. Swiss Med Wkly. 2010;140:w13086.
30. Muir SW, Yohannes AM. The impact of cognitive impairment on rehabilitation outcomes in elderly patients admitted with a femoral neck fracture: a systematic review. J Geriatr Phys Ther 2001. 2009;32(1):24–32.
31. McGilton KS, Mahomed N, Davis AM, Flannery J, Calabrese S. Outcomes for older adults in an inpatient rehabilitation facility following hip fracture (HF) surgery. Arch Gerontol Geriatr. 2009 Aug;49(1):e23–31.
32. Bellelli G, Frisoni GB, Pagani M, Magnifico F, Trabucchi M. Does cognitive performance affect physical therapy regimen after hip fracture surgery? Aging Clin Exp Res. 2007 Apr;19(2):119–24.
33. Stenvall M, Olofsson B, Nyberg L, Lundström M, Gustafson Y. Improved performance in activities of daily living and mobility after a multidisciplinary postoperative rehabilitation in older people with femoral neck fracture: a randomized controlled trial with 1-year follow-up. J Rehabil Med. 2007 Apr;39(3):232–8.
34. Penrod JD, Boockvar KS, Litke A, Magaziner J, Hannan EL, Halm EA, et al. Physical therapy and mobility 2 and 6 months after hip fracture. J Am Geriatr Soc. 2004 Jul;52(7):1114–20.
35. Beloosesky Y, Grinblat J, Epelboym B, Hendel D. Dementia does not significantly affect complications and functional gain in elderly patients operated on for intracapsular hip fracture. Arch Orthop Trauma Surg. 2001 May;121(5):257–60.
36. Marcantonio ER, Flacker JM, Wright RJ, Resnick NM. Reducing delirium after hip fracture: a randomized trial. J Am Geriatr Soc. 2001 May;49(5):516–22.
37. van Dortmont LM, Douw CM, van Breukelen AM, Laurens DR, Mulder PG, Wereldsma JC, et al. Outcome after hemi-arthroplasty for displaced intracapsular femoral neck fracture related to mental state. Injury. 2000 Jun;31(5):327–31.
38. Rozzini R, Frisoni GB, Barbisoni P, Trabucchi M. Dementia does not prevent the restoration of safe gait after hip fracture. J Am Geriatr Soc. 1997 Nov;45(11):1406–7.
39. Kennie DC, Reid J, Richardson IR, Kiamari AA, Kelt C. Effectiveness of geriatric rehabilitative care after fractures of the proximal femur in elderly women: a randomised clinical trial. BMJ. 1988 Oct 29;297(6656):1083.
40. Naglie G, Tansey C, Kirkland JL, Ogilvie-Harris DJ, Detsky AS, Etchells E, et al. Interdisciplinary inpatient care for elderly people with hip fracture: a randomized controlled trial. CMAJ Can Med Assoc J J Assoc Medicale Can. 2002 Jul 9;167(1):25–32.
41. Lenze EJ, Munin MC, Dew MA, Rogers JC, Seligman K, Mulsant BH, et al. Adverse effects of depression and cognitive impairment on rehabilitation participation and recovery from hip fracture. Int J Geriatr Psychiatry. 2004 May 1;19(5):472–8.
42. Rolland Y, Pillard F, Lauwers-Cances V, Busquère F, Vellas B, Lafont C. Rehabilitation outcome of elderly patients with hip fracture and cognitive impairment. Disabil Rehabil. 2004 Apr 8;26(7):425–31.
43. Lenze EJ, Skidmore ER, Dew MA, Butters MA, Rogers JC, Begley A, et al. Does depression, apathy or cognitive impairment reduce the benefit of inpatient rehabilitation facilities for elderly hip fracture patients? Gen Hosp Psychiatry. 2007 Apr;29(2):141–6.
44. Uy C, Kurrle SE, Cameron ID. Inpatient multidisciplinary rehabilitation after hip fracture for residents of nursing homes: a randomised trial. Australas J Ageing. 2008 Mar;27(1):43–4.
45. Moseley AM, Sherrington C, Lord SR, Barraclough E, St George RJ, Cameron ID. Mobility training after hip fracture: a randomised controlled trial. Age Ageing. 2009 Jan;38(1):74–80.
46. Vidán M, Serra JA, Moreno C, Riquelme G, Ortiz J. Efficacy of a Comprehensive Geriatric Intervention in Older Patients Hospitalized for Hip Fracture: A Randomized, Controlled Trial. J Am Geriatr Soc. 2005 Sep 1;53(9):1476–82.
47. Shyu Y-IL, Tsai W-C, Chen M-C, Liang J, Cheng H-S, Wu C-C, et al. Two-year effects of an interdisciplinary intervention on recovery following hip fracture in older Taiwanese with cognitive impairment. Int J Geriatr Psychiatry. 2012 May;27(5):529–38.
48. Toussant EM, Kohia M. A critical review of literature regarding the effectiveness of physical therapy management of hip fracture in elderly persons. J Gerontol A Biol Sci Med Sci. 2005 Oct;60(10):1285–91.
49. Cameron ID, Handoll HH, Finnegan TP, Madhok R, Langhorne P. WITHDRAWN: Co-ordinated multidisciplinary approaches for inpatient rehabilitation of older patients with proximal femoral fractures. Cochrane Database Syst Rev. 2009;(4):CD000106.
50. Prestmo A, Hagen G, Sletvold O, Helbostad JL, Thingstad P, Taraldsen K, et al. Comprehensive geriatric care for patients with hip fractures: a prospective, randomised, controlled trial. Lancet Lond Engl. 2015 Apr 25;385(9978):1623–33.
51. Smith TO, Hameed YA, Cross JL, Henderson C, Sahota O, Fox C. Enhanced rehabilitation and care models for adults with dementia following hip fracture surgery. In: Cochrane Database of Systematic Reviews [Internet]. John Wiley & Sons, Ltd; 2015. Available from: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010569.pub2/abstract