http://dem.sagepub.com/ 

Dementia

http://dem.sagepub.com/content/early/2010/09/13/1471301210381679The online version of this article can be found at:

 DOI: 10.1177/1471301210381679

published online 14 September 2010DementiaCarole A. Robinson, R. Colin Reid and Heather A. Cooke

with dementiaA home away from home: The meaning of home according to families of residents

  

Published by:

http://www.sagepublications.com

can be found at:DementiaAdditional services and information for     

http://dem.sagepub.com/cgi/alertsEmail Alerts:  

http://dem.sagepub.com/subscriptionsSubscriptions:  

http://www.sagepub.com/journalsReprints.navReprints:  

http://www.sagepub.com/journalsPermissions.navPermissions:  

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

A home away from home:The meaning of homeaccording to families ofresidents with dementia

Carole A. RobinsonUniversity of British Columbia–Okanagan, Canada

R. Colin ReidUniversity of British Columbia–Okanagan, Canada

Heather A. CookeUniversity of Victoria, Canada

Abstract

This study sought to understand the ways in which family caregivers to institutionalized relatives

with dementia perceived and experienced the relocation of their relative to a more home-like

setting of care. Twenty-nine family members were interviewed through focus groups and

individual interviews following the closing of two traditional care facilities and the subsequent

migration of all residents to dementia cottages. Questions focused on the assessment and

evaluation of quality of care. Results of this qualitative study pointed to the centrality of

relationships in creating a truly homelike environment, in addition to what constitutes effective

relational practice from the family perspective. We argue that the creation of a meaningful home

for persons with dementia must encompass a relational orientation, both philosophically and in

practice, that is inclusive of resident, staff, and family.

Keywords

dementia care, family members, long-term institutional care, relational practice, relocation

Introduction

Institutional care models for persons with dementia continue to evolve. The change inapproach to care over the course of the past several decades, from institutional to home-like care, can be seen as a progressive shift in the culture of long-term care facilities. It is nolonger acceptable to ‘warehouse’ older persons who have passed their ‘best before’ date, and

Corresponding author:

Carole A. Robinson, University of British Columbia–Okanagan, Canada

Email: carole.robinson@ubc.ca

Dementia

0(0) 1–19

! The Author(s) 2010

Reprints and permissions:

sagepub.co.uk/journalsPermissions.nav

DOI: 10.1177/1471301210381679

dem.sagepub.com

Dementia OnlineFirst, published on September 14, 2010 as doi:10.1177/1471301210381679

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

it is widely agreed that older persons with dementia who require institutionalization have thesame right to high quality care as other, non-demented, long-term care residents (Calkins &Marsden, 2000). In fact, given that the majority of current older (aged 65þ) long-term careresidents have some form and level of dementia (Train, Nurock, Kitchen, Manela, &Livingston, 2005), the need to develop effective care strategies that meet the unique needsof this growing population is all the more pressing. The development of dementia cottages isa recent effort to effectively accommodate the care needs of residents with dementia (Reid,Robinson, & Cooke, 2006). Central to the concept of a dementia cottage is the incorporationof home-like attributes, which have been put forth in the research literature as a necessarycondition of optimal dementia care (Chappell & Reid, 2000). Home-likeness itself, however,remains problematic in both its conceptualization and, consequently, its implementation.Conceptually, there exists considerable agreement among researchers that although thephysical attributes of home are important in an institutional setting, they are not enough(Reimer, 2004). Best practice requires the development, continuation, and ongoingmanagement of social relations that are meaningful not only to the person with dementia,but to the family and the institutional staff who care for that person (Nolan, Keady, &Aveyard, 2001; Nolan, Ryan, Enderby, & Reid, 2002). Yet, attention to relationships maynot be seen as a priority for institutional caregivers. This arises not only because of chronicshort staffing, but because relational practice has not evolved to the point where it isunderstood as essential to high quality care.

The purpose of this study was to broadly understand the outcomes when persons withdementia were moved from an institutional to a cottage setting. This article reports on oneaspect of the study: the family experience of the move. Following from the currentunderstanding that a home-like setting is more appropriate for persons with dementia andis associated with higher quality care, we were particularly interested in the family members’perceptions of what constitutes high quality care. Through the family members’ accounts, wehave come to understand the centrality of relationships in a truly home-like environment, aswell as what constitutes effective relational practice from the family perspective. We arguethat care models lacking in attention to effective relational care practices, bothphilosophically and in practice, will be unable to create a meaningful home for personswith dementia. The fundamental question our research has led us to ask is this: ‘Is itgood enough to create a ‘‘home-like’’ physical setting of care for persons with dementiaor should we be setting our sights higher on the creation of home?’

Literature review

The importance of providing home-like living environments for institutionalized seniors withadvanced dementia is widely recognized (Day, Carreon, & Stump, 2000). Research continuesto put home-likeness at or near the top of effective interventions in the ongoing endeavour tooptimize quality of life outcomes for persons with dementia. In terms of the physicalenvironment, significant improvements have indeed taken place in response to recentresearch. For example, small unit size, family scale dining areas, private bedrooms,domestic furnishings, outdoor space that is easy to access, is fenced and shaded, the useof soft finishes on floors and other surfaces, display of personal items and subdued lightingare all established in the research literature as being important improvements to the physicalenvironment and are now evident in care facilities (Brawley, 2006; Briller & Calkins, 2000;Day & Calkins, 2002; Kovach, Weisman, Chaudhury, & Calkins, 1997). The organizational

2 Dementia 0(0)

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

aspects of the provision of home-like care have also been subjected to scrutiny byresearchers. This body of research has shown that flexible times for rising and retiring,resident participation in household tasks, access to a variety of snacks, family style mealservice, and resident control of portion size all contribute to a home-like atmosphere (Briller& Calkins, 2000). These developments, to the extent that they are implemented, can be seenas necessary efforts to improve quality of care for the vulnerable population underconsideration here. They are important steps towards the development of a genuine homewithin the institutional setting.

The essence of home, however, includes but is much more complex than the perceivedand/or objective adequacy of observable physical surroundings and the organizationalpolicies within a long-term care facility. The large body of research literature on themeaning of home attests to this (e.g., Gubrium, 1993; Rowles & Chaudhury, 1995). Homeis conceived of as the result of an interactive and ongoing dynamic process between theindividual and her environment (including physical, social and psychological components)(Carboni, 1990, p.32). According to Calkins (2001, p.S75), ‘It is the patterns of activities &interactions, the ways meals are prepared & served, and opportunities for greater controland privacy, which are typical at home but exist to a lesser degree in other settings, thatmake a place like home.’ That is, the structure of the relationships between care providersand care recipients influences the extent to which a setting is experienced as home-like (e.g.,whether staff sit and eat with residents at mealtimes, serve them restaurant style, or just settrays in front of them). Whether or not an individual experiences a sense of home is thusdependent on the existence, maintenance and management of the relevant factors in thebroader social and relational environment (not just the physical).

It is because the meaning of home is embedded in human, and in particular, familyrelationships (Kelley & Tripp-Reimer, 1999) that issues of human emotion and identity(Frank, 2005), and independence and autonomy (Dobbs, 2004) must be reckoned with inany effort to create a home-like environment. For example, Frank (2005) argues that when adementia resident says ‘I want to go home,’ they don’t want to literally go to a physical placethey knew as home. They are, rather, seeking validation of their personhood, of theiridentity, which can only occur in relationships. Groger (1995) asserts that more residentsassociate home with family and other social relationships than with independence andautonomy. For the former residents, Groger argues, the nursing home can become home(as opposed to ‘a home’) because social relations can continue. For the latter residents, whothink of home in terms of autonomy, a nursing home can never be more than a home (asopposed to ‘home’). The provision of optimal care within a facility, including home-likeness,therefore requires meaningful interaction between resident, staff and family (Buckwalter,Maas, & Reid, 1997; Nolan et al., 2001; Pillemer & Henderson, 1998).

In an attempt to explore alternatives to traditional institutional models of care for personswith dementia, practitioners have begun to experiment with smaller-scale, more home-like units.For example, Woodside Place in the U.S. pioneered the ‘households’ concept, in which 12residents live in a household consisting of short, double-loaded (i.e., rooms on both sides)corridors with a kitchen and dining room located at the entrance to each household (Day &Calkins, 2002). In Sweden, a group-livingmodel has been developed inwhich care is provided byspecially trained staff in small collectives in ordinary residential quarters (van der Voordt, 1997).The emphasis in the group-living model is on an attractive housing and living atmosphere,autonomy, and the normalization of everyday life, which includes the avoidance of hospitalroutines (Annerstedt, Gustafson, & Nilsson, 1993; van der Voordt, 1997). Similarly Britain has

Robinson et al. 3

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

developed a domusmodel inwhich approximately 12 residents reside in either a purpose-built orconverted building consisting of individual bedrooms with shared bathrooms or ensuites, aliving room, dining room, kitchen and garden. Again, the emphasis is on maintainingresidents’ independence and capacities for as long as possible through active participation inthe household (Dean, Briggs, & Lindesay, 1993). In Canada, cottage homes for people withdementia first began to appear in the mid-1990s. While considerable anecdotal evidence existsregarding the success of these ‘less institutional’ models, there is a paucity of empirical evidencelinking these models to resident outcomes.

The study

The purpose of the current, mixed methods study was to examine the impact of differingdementia care environments on residents and family members. The study took place in twodifferent communities in British Columbia, Canada in which cognitively impaired residentswere relocated from traditional units (operated by the local health authority) slated forclosure to newly-built dementia cottages (operated by a non-profit organization). Thestudy followed 26 residents transferred from a 30-bed Special Care Unit (SCU) to four10-bed dementia cottages (Community 1), and 42 residents transferred from a 75-bedcomplex care unit to one 15-bed and five 12-bed cottages (Community 2).

The findings that proved most informative were from the qualitative portion of the study;therefore, this article reports only one aspect of the larger study – the family perspectiveregarding the move of a member with dementia to a new more ‘home-like’ care setting.(Quantitative analyses based on resident medical chart data were also conducted.)Foundational to the study was the understanding that the move reflected not only achange in physical setting but a change in the model of care provision, which mightinfluence quality of and satisfaction with care. An underlying assumption was that familymembers would be able to inform us regarding satisfaction with care and assessment ofquality of care for their resident in both contexts of care. A qualitative interpretive approachwas chosen for this aspect of the study since we were interested in an in-depth understandingof personal experiences in an area that had received little attention to date. Ethical approvalwas obtained from the University of British Columbia Okanagan and the Interior HealthAuthority of British Columbia.

Study participants

For the purposes of this study, the family member was defined as the legal guardian of theresident involved in the move. An intermediary contact person, who was not affiliated witheither the researchers or the residential care homes, but with whom family members/legalguardians were familiar and had extensive contact with prior to the relocation, was hired byInterior Health to act as a third party in the recruitment process. The intermediary contactedfamily members/legal guardians (informed consent was sought from each resident’s legalguardian due to the advanced stages of dementia experienced by almost all residents) bytelephone to briefly describe the study and to ask if they were interested in participating. Ifthe family member agreed, the intermediary offered them two options: 1) the intermediary couldforward the resident’s and family member’s name to the researchers or; 2) the family membercould contact the researchers directly. If the family member did not wish to participate in thestudy, their contact information was not forwarded to researchers. All family members/legal

4 Dementia 0(0)

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

guardians of all participating residents (N¼ 51), except five who were automatically excludedfrom the study due to their being under guardianship of the Public Guardian and Trustee ofBritish Columbia, were approached by the intermediary contact person to request theirparticipation in the study. In total, 29 family members representing 26 residents participatedas some legal guardians brought other involved family members to the focus groups. See Table 1for demographic details of the participating family members; data were unavailable for twoparticipants from Community 1. The majority of participants were adult daughters who hadcared for their parent with dementia for five years or longer and who did not work outside thehome.

Data collection

In order to accommodate the family caregivers’ desire to participate and their varyingavailability, data were collected via individual interviews, focus groups, and writtenresponses to interview questions (Table 2).

Table 1. Caregiver demographics

Community 1 (n¼ 9)* Community 2 (n¼ 18)

Age (years) X¼ 58.4, SD¼ 15.1 X¼ 61.0, SD¼ 10.0

Gender

Female 6 (66.7%) 14 (77.8%)

Male 3 (33.3%) 4 (22.2%)

Relationship to resident

Spouse 2 (22.2%) 1 (5.6%)

Adult child 6 (66.7%) 15 (83.3%)

Other 1 (11.1%) 2 (11.1%)

Level of education

High school 4 (44.4%) 5 (27.8%)

Some college or trade 0 (0%) 3 (16.7%)

College or trade 3 (33.3%) 5 (27.8%)

University 2 (22.2%) 4 (22.2%)

Post-graduate 0 (0 %) 1 (5.6%)

Employment status

Full-time 5 (55.6%) 3 (16.7%)

Part-time 0 (0%) 5 (27.8%)

Retired 4 (44.4%) 9 (50.0%)

Not employed 0 (0%) 1 (5.6%)

Length of time as caregiver

0–5 years 2 (22.2%) 10 (55.6%)

5–10 years 3 (33.3%) 2 (11.1%)

10þ years 4 (44.4%) 6 (66.7%)

Length of time resident in facility

0–5 years 6 (66.7%) 13 (72.2%)

5–10 years 3 (33.3%) 5 (27.8%)

Time spent with resident

each week (hours)

X¼ 7.3, SD¼ 6.9 X¼ 4.3, SD¼ 4.4

*Note: Demographic data were unavailable for two participants.

Robinson et al. 5

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

In Community 1, there was a substantial time lapse between the date of the move and thequalitative component of the study, which meant that a number of the relocated residentshad died. We were concerned that family experiences might differ depending on whether ornot the resident had died following the move; therefore, bereaved and current caregiverswere interviewed separately. The interview questions (Table 3) were piloted in two individualinterviews, one with a current family caregiver and one with a bereaved family caregiver.These interviews confirmed the usefulness and completeness of the interview guides, andprovided in-depth data regarding the family perspective. No revisions were required to theinterview guides and a focus group for bereaved family caregivers was conducted.Scheduling problems arose for the current family caregivers so they were interviewedindividually. All interviews and focus groups were conducted by the first author who is anexperienced qualitative researcher. All interviews and focus groups were audio-recorded thentranscribed verbatim. In Community 1, 11 family members representing 10 residents

Table 3. Interview guide

(1) What was your experience of the move of your family member from Facility X to Facility Y?

(2) When you are looking at the quality of care given to your family member, what sorts of things do you

look for?

(3) How do you like to be involved in the care and life of your family member?

(4) How has this been affected by the move of your family member to Facility Y?

(5) Thinking back to Facility X:

(a) What did you notice about the quality of care there?

(b) How did the staff involve you in the care and life of your family member?

(c) What helped you as a family member?

(d) What got in your way as a family member?

(e) Was there anything missing in the care there?

(6) Now, thinking about Facility Y:

(a) What do you notice about the quality of care there?

(b) How does the staff involve you in the care and life of your family member?

(c) What helps you as a family member?

(d) What gets in your way as a family member?

(e) Is there anything missing in the care there?

(7) Overall, what would you say about the impact of the move of your family member to Facility Y?

(8) Overall, what would you say about your satisfaction with care at Facility Y?

(9) Is there anything else we should know?

Note: The same questions were used for the bereaved family caregivers, with the only difference being the use of past,

instead of present, tense.

Table 2. Data collection methods

Data Collection Method Community 1 (n¼ 11) Community 2 (n¼ 18)

Focus Group 6 (in 1 focus group) 14 (between 2 focus groups)

Individual Interview 5 0

Written Responses 0 4

6 Dementia 0(0)

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

participated in either an individual or focus group interview (7 bereaved caregivers; 4 currentcaregivers).

Data collection for Community 2 occurred shortly after the move and none of theresidents had died. Fourteen family members representing 13 residents participated in twofocus groups; four family members responded in writing to the interview questions as theywere unable to attend the focus groups.

Data analysis

Thematic analysis was completed using the method of constant comparison (Glaser &Strauss, 1967). This means there was an iterative process of comparing data across andwithin transcripts to identify the salient aspects of the experience from the familyperspective. The overarching theme related to perceived quality of care and satisfactionwith care in the new cottage facility centered on the creation of ‘home.’ While theparticipants from the two communities addressed the same issues, experiences variedacross the study sites, which will be reflected in the findings below.

Study findings

Community 1

Finding home away from home. The family members contextualized their experience withthe move to the cottages in two ways: the first in relation to their experience as caregiverswithin their own homes and the second in relation to other placements. Three importantbeliefs influenced their responses. The first belief is that home is the best place to live for aperson with dementia. They were very clear that dementia is not a sickness that requires aninstitutional kind of care like a hospital.

I know for my husband, he didn’t like going there because he felt like [our relative] was dyingbecause that was the type of atmosphere.

The second belief is that quality of life and living a life with meaning was critical for theirfamily member. Despite the progression of dementia such that eventually the conditionbecame more present than the family member, the informants were focused on theimportance of living a life that mattered rather than merely existing or surviving. Thethird belief is that family members are the best caregivers for persons with dementia.These informants were committed caregivers who often exhausted their physical,cognitive, and emotional resources before agreeing to have their family member placed incare. As one family member stated: ‘We have come to the realization ourselves, of course,that we cannot carry on.’ The family caregiver’s relational connection to the member withdementia remained strong and in fact generated suffering when placement occurred thatpersisted over time and, for some, increased. This suffering took the form of grieving thelosses arising from placement, guilt for being unable to prevent placement, second guessingthemselves with regard to the necessity of placement, and concern over the circumstances ofcare. For example, one resident who was characterized as a ‘walker’ was confined in a‘geriatric chair,’ while another resident who was still able to be up and about was placedin a wheelchair, and another resident who needed social connection with staff withdrew intohimself, experiencing depression. Seeing their family member in these situations invitedworry and despair for the informants.

Robinson et al. 7

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

And the very fact that she was in a geriatric chair and locked in there, I have always hated that. Ididn’t know what to do.

Judgments about the quality of care and satisfaction with care at the cottages were made inrelation to several reference points: knowing the person ‘underneath’ the dementia, the carethey were able to provide in the family home, and care in other placements, particularly theSCU being closed. This unit was characterized as institutional, dark, constrained by rigidroutines that were not appropriate for individual residents, and lack of adequate staff toprovide attentive, individualized care. As one family caregiver described:

It was more like a hospital. It had its routine rather than Pop’s routine. The nurses were

overloaded in terms of the number of residents that they cared for. It was harder to getinformation. You saw him [family member] in a wheelchair rather than up and about . . . Ithink the only time they really ever gave me a lot of information . . .was when I went in and Ihad to ask.

Another family member stated it this way:

That was the hardest thing for me because I had him for so long and when I put him into

[Special Care Unit] I was devastated. I felt like I had chopped my left arm off . . .They didas well as they could but it was more like a hospital facility . . . and I always felt like I was leavinghim in . . . I mean, he is in a lock-down facility but it just felt very sterile. It didn’t feel like home.

As well, the residents were often unhappy and either begged to come home, tried to leave, orberated family members for abandoning them.

If we brought him home for anything he didn’t want to go back. [He would say] ‘I don’t want togo back. Aren’t I home? Aren’t I home?’

The cottages ‘as home’. The home-like nature of the cottages was the outstanding featureof this setting of care. Initially comments centered on the physical aspects contributing to thesense of ‘home’ in this setting as exemplified in the following quotations:

But I have found that the dementia cottages, if you want to call them that way, are much betterthan they were. It is less like an institution and more like being at home . . .The cottages arebeautiful.

It is nice that he has his own private room and the kids do their artwork and put it up on his wall.And we were able to put curtains up and just kind of personalize his room a little bit so he seems

to be really happy.

The way they built the dementia cottages, I think they intended it to be home not aninstitution . . .These are like being in a home. They sit around the dining table and they watchwhat she is doing in the kitchen and sometimes some of them will get up and help with foldingthe tablecloths when they come out of the dryer.

Thus the physical setting of a smaller, well-lit unit with a personalized bedroom, kitchenwhere meals are prepared, laundry facility, TV in the living room, room to walk, and the‘hustle bustle’ of normal family life is seen as inviting involvement of the residents ineveryday life. This is viewed as more suitable for meeting the needs of both the personand the dementia. It also invited family involvement, for example in one family the

8 Dementia 0(0)

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

grandchildren were happier to visit ‘because it doesn’t feel like going to the hospital and thatGrandpa is sick, sick.’

While the home-like physical environment was important to the quality of care, it was notsufficient unto itself. Other critical aspects of creating a home that supported living ratherthan merely existing for these residents included: excellent physical care; consistentrelationships between the residents and the staff so the staff came to know the residentswell and the residents knew the staff; balancing stability and predictability with flexibleroutines that matched the individual needs of the resident, which ‘allow him to behimself;’ fewer residents so a more manageable environment for the resident; more one-on-one care with closer staff observation; and enhanced family access to staff as regularconversations occurred in the midst of everyday activities.

Initially there was concern that the cottages looked like home but something was missingas there was a lack of activities and social interaction.

So in the beginning when it was all beautifully furnished and I carry flowers there and we haveflowers everywhere, it felt good. And then you start to think, here they sit . . .And they just sitand sit and sit and this is what I feel, something is lacking.

Over time, scheduled activities have been incorporated into life in the cottages, whichenhanced satisfaction. These include the relational rituals of everyday family life such asbirthday celebrations, Christmas dinner, and Valentine’s tea. However, whether theseactivities were viewed as adequate to meet the needs of the resident varied from family tofamily. What this highlights is that there is more to home than what meets the eye. Animportant distinction was drawn between a ‘homely atmosphere’ and home. In addition tothe essential aspects of home that have been identified, each family also had uniqueexpectations in relation to what constitutes home for their resident family member thatrelated to knowing the person and what life in their own homes entailed. Theseexpectations focused on what the resident was doing and experiencing that addressed theperson they were before the dementia and the life they had experienced in their own home.For one resident this meant working with numbers, for another it meant working with hishands, and for another it meant physical activity, particularly in nature. For one familycaregiver, the essential aspect of home was one-on-one care just like she had offered in herown home. There was an expectation that staff relate to the person ‘underneath’ thedementia and account for this person when providing meaningful opportunities to engagein everyday activities.

In order to be counted as home, the cottages needed to both look and feel like home.Thus, relationships and relational connection between staff, residents, and family caregiverswere extremely important facets of experiencing the cottages as ‘home.’ To varying degrees,the professional caregivers became acknowledged as the residents’ second families. However,initially there was concern because, naturally enough at that point, the staff did not know theresidents and family caregivers, and the family did not know the staff. Family membersrecalled meetings where they passed on their knowledge of the residents but were uncertainwhether this ever reached the care aides.

The staff characteristics that the informants believed contributed to relational connectionwith the residents were well-developed observation skills, personal interest in each resident, asense of humor, ability to take things in their stride, attention to detail, caring, kindness, andrespect for the residents as persons. In other words, the offering of attentive, person-specificcare was critical. Of course, the other important element was time: from all perspectives, staff

Robinson et al. 9

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

time was at a premium. The specific training the staff received was also recognized asessential to working with this vulnerable population. In this context, family membersnoticed that staff found new solutions to old problems, which enhanced residents’ qualityof life. This is exemplified in the following two quotes:

They gave him a walker. He walks with a walker because he is a bit shaky. When he was at the[previous facility] . . .we noticed he was in a wheelchair all the time. So I don’t know if they didn’ttrust that he was able to get around or what, but man he gets going with that walker of his. You

got to tell him to slow down . . .He seems to be happy.

She is a real walker. And then she would be walking too fast, with her head down and she wouldstumble and fall and she would get black eyes and bloody noses. So what they did at [previousplacement] was put her in the geriatric chair and she was more or less a prisoner in there. And

she was trying to get out and she couldn’t get out . . .That is one thing I like about the cottages –there they don’t put them in [the geriatric chair]. And, you know, they looked at other reasons ofhow she was slipping and stuff and mainly what to do. [They] let her run around in her bare feetand she doesn’t stumble as much.

Relational connection between the staff and family caregivers was another influence onthe sense of home. The staff members were viewed as demonstrating caring when they askedquestions of family members, attended to preferences for end of life care, acknowledgedfamily caregiver’s feelings of guilt, answered questions, telephoned with informationor requests, provided information about changes in care, and involved family caregiversin decisions down to the minutiae of everyday life if that was the family member’s preference.

They call me if he needs deodorant or undershirts or whatever so I just like that I am moreinvolved with his progress as he is going along. And I know when they were in the other places itis, just they are so busy that they couldn’t phone me every time there was something that had to

be looked after. And as for medications, they always keep me informed if there are medicationchanges and I am always in touch with his doctor and stuff. So I just feel like, I feel like he ismore at home.

This collaborative approach generated a sense of caring together as a family. Not only didthe staff care for the residents, they cared for the family members as well by doing suchthings as alleviating suffering associated with guilt, translating resident behavior, invitingfamily involvement, and fostering connection between the resident and the family caregiver.One family caregiver who continued to carry a burden of guilt after many years recounted:

And the girls [staff] actually tell me this. They say ‘You shouldn’t feel guilty. One person cannotdo what two of us are doing all the time as our job. One person can’t do it 24 hours a day. You

can’t do it. You are going to break . . .Your doctor knows it, everybody knows it, we all know it.So trust us and lay aside your guilt and enjoy your visits when you come.’

Thus care was family centered, with both first and second family members acknowledgingtheir mutual involvement and positive regard. As one family caregiver remarked, ‘They[staff] always find something nice to say to the patient and to us when we walk in. Youknow, we feel that we are family.’

Limitations to the cottages as ‘home’. The family informants recognized some limitationsto the cottages as ‘home.’ The ongoing maintenance of home rested on the shoulders of thestaff members who varied in their ability to do all that was required. There was recognition

10 Dementia 0(0)

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

that the workload for two staff members during a twelve hour shift was considerable. Clearlythere were competing demands for staff who were charged with creating this ‘homelyatmosphere.’ Questions arose: Does emphasis on cooking, cleaning and laundry take timeand energy away from addressing serious health care needs? Is the atmosphere enough whenserious things like falls occur and people need to wait for help while lying on the floor? Whatis reasonable to expect of staff in these circumstances? What is asking too much? One familyin particular remained concerned about loneliness and social isolation in the cottages wherehuman ‘comings and goings’ were diminished from the previous unit and the staff did notseem to have enough time to simply sit and pay attention to the resident. This same familywas concerned about the lack of trees and walkways outdoors; for them it was home-likeindoors but not so outdoors. They also noted the absence of toys for visiting children.

It must be emphasized that ‘one size does not fit all.’ The absence of ‘lock down chairs’ atthe cottages was a problem for one family caregiver as:

My mom needed one. She had to be restrained because she wouldn’t stop. I mean theirphilosophy was because it was going to be more of a home setting she would stop but shewas doing that at home.

Another family described fighting for a hospital bed which did not fit with the ‘home-like’requirements. Thus, in some respects, when the philosophy was strictly adhered to, meetingthe unique needs of the individual was compromised, which in turn compromised the qualityof care. This meant that family caregivers needed to continue in a strong advocacy role evenin this more appropriate care setting.

Outcomes of the cottages as ‘home’. Clearly one of the outcomes of the cottages as ‘home’was enhanced quality of life for many of the residents. This was visible to family caregiversas increased happiness, increased functional capacity, increased independence, increasedinvolvement with everyday life, and fewer requests to ‘go home.’ As one daughter notedabout the change she saw in her father: ‘He smiled a lot more.’

Interestingly, as the residents became attached to their new home this was experiencedboth as a positive outcome and as a loss for some of the family caregivers.

Here [at the cottages] we actually phoned to see . . . if he wanted to come home with us forThanksgiving dinner. [He said] ‘Nope, I am at home; I will stay here.’ I mean it hurt myfeelings he wasn’t coming for my turkey dinner but he seems to be happy where he is and

that is what our number one concern is that wherever he is, he is looked after and happy.

For the family caregivers, outcomes of the move included diminished guilt, reduced ‘need toworry,’ enhanced peace of mind and comfort with placement, a freedom to carry on with life,and alleviation of some of the burden of care through reduced responsibility and fewer tasks.This highlights the importance of a family centered approach to care where there is strongrecognition that illness is a family affair even when the ill member resides outside the familyhome.

As family members became acquainted with their residents’ new family, some developedsignificant attachments, which offered the opportunity of important life lessons.

Actually my children have become attached to some of the other people in [our relative’s]cottage . . . [One resident] died in April I guess and my children were very upset because she

liked to dance and do bowling and so they [loved being with her] . . . I think it is important

Robinson et al. 11

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

for kids to see that part of life as well. And it is much more of a natural home life atmospherethere than seeing somebody in a hospital bed with tubes coming out every which way.

When a home-like setting is not the answer. A very small number of families hadsignificantly different experiences than the others. Difficulties arose in relation to acombination of several circumstances: when the family did not support the move itselfand wished the resident to remain in the SCU; when the resident was traumatized by thechange in routine and setting; when the resident’s physical health declined significantlyimmediately after the move; and, when the family believed that a resident’s deathfollowing the move was preventable. For the bereaved caregivers, the most salient aspectof the situation was whether their wishes were honored and whether they experienced havinga choice in the relocation of their family member. From the family perspective, when theresident was well cared for in the original unit and had developed deeply caring relationshipswith the staff, the benefit of the move to the cottages was difficult to see. In thesecircumstances, if the perceived outcome of the move was death among strangers, markeddissatisfaction and personal suffering resulted. One participant explained it this way:

You see I can’t complain about [the first facility] I never found my mom wet or dirty, not ever

while she was there and those girls loved my mom. You know, I mean they kissed her andhugged her and the year before she had fallen and fractured her pelvis; she was back up andwalking in three weeks . . . I just wanted her to stay with those people, you know . . .They were

her family, not me anymore . . . I just wished she could have died with people that had becomeher family. That is my only regret.

Thus, for the bereaved caregivers, if there was a problem it related to how their familymember died, not that they had died. Significantly, as the quote above demonstrates, itwas the lack of strong staff-resident relationships that was at the heart of families’concerns, more so even than the actual death.

Community 2

Finding home away from home. There were some striking differences between the first andsecond communities that serve to further illuminate important aspects of home. It must beremembered that both the facility that was closed and the cottages differed between the twocommunities. Overall, the family members in the second community expressed somewhathigher satisfaction with the first facility and lower satisfaction with the cottages whencompared to the first community where there was lower satisfaction with the first facilityand higher satisfaction with the cottages.

The cottages as ‘home’. Many of the participants were pleased about the more home-likephysical setting of the cottages. However, this was sometimes tempered by allegiance to thefirst setting that was described as more ‘homey, more organized, and more welcoming offamily members’ by some. Satisfaction was also negatively influenced by concerns about thephysical design, as well as cleanliness.

Participant 1: I was told, I asked one of the care aides, I said: ‘How often are they bathed?’ ‘Oncea week.’ And that’s when they change their bed. I said, ‘That’s fine, that’s enough for their dry

skin.’ I said, ‘How often are the floors dusted, vacuumed, mopped, whatever?’ ‘Once a week.’

12 Dementia 0(0)

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

Researcher: And is that enough for you?Participant 1: Well when you’re seeing dust all over the floor and Kleenexes and things . . .

Participant 2: About cleanliness, I totally agree. I’ve cleaned my mother’s toilet more than once,

the sink sometimes you think it hasn’t been cleaned in a week.

Experience varied widely with some family members being extremely satisfied andothers dissatisfied. Some of the design flaws that were unique to the second communityincluded: large private bathrooms with showers that were unused as tub bathing was preferredby most residents; inadequate closet space; absence of light switches by the bed; no place to walkleading to increased physical deterioration; lack of passages connecting the cottages making itdifficult for residents to congregate and create a sense of community; and, solid fencing thatblocked a view. Many family members expressed dissatisfaction with the lack of connection tonature and the absence of a beautiful garden, something that was present in the previous facility.

As in Community 1, a home-like physical space was just the beginning of creating a homefor the residents. Once, again, the key aspect was relationships between the residents and thestaff, which varied widely. The family caregiver expectations were consistent across the twostudy sites and include: excellent physical care, compassion, warm communication, gentletouch, superb observation skills, ‘getting acquainted with [residents’] little idiosyncrasies,’and individualized care. While some family members observed this happening and wereextremely satisfied, others noticed that the staff members were ‘so busy’ that, despite theirdesire to spend time with the residents, they became task oriented. These family membersreported staff lack of involvement with the residents, absence of touch, and missingobservations of important physical changes. The contrasting experiences are captured inthis small focus group interaction:

Participant 1: Well I know how the care aides speak to her and interact with her. That makes all

the difference to my mother. If they joke with her and laugh about, have a bit of time to spendwith her . . . it makes so much difference than if she’s left there to sit by herself.Participant 2: There’s things that you watch for . . . because you never see that . . . little touch on

the shoulder.Participant 1: And I see it all the time.Participant 2: When you used to walk in and there’s a nurse leaving or a care aide leaving after

helping her put her socks on – she’d give her a little pat on the shoulder and comment onsomething . . .Now it seems to be in and out and much more task oriented.Participant 3: One of the interesting things was that my mother had a mini stroke . . . a monthago and they called me right away and told me about it and reassured me.

Participant 4: My mother has had a number of mini strokes that nobody has picked up on.

Just as the relationships between staff and residents varied, so did the relationshipsbetween staff and family members. Some family members reported good communication,willingness of staff to work with family requests regarding care, and a welcomingattitude; whereas, other family members experienced the opposite. One participantremarked on ‘the unprofessional staff in the cottages. They look at you like you’re aninvader in their space.’

Limitations to the cottages as ‘home’. What might explain the widely divergent experiencesin Community 2 as compared to the more homogenous experiences reported in Community1? It seems that in the second community each cottage was a universe unto itself and the

Robinson et al. 13

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

satisfaction of family members varied depending on which cottage was home to theirresident. Each cottage had dedicated staff who had varying abilities, which resulted invarying degrees of satisfaction for family members. What has become strikingly clear isthe risk inherent in this model of care associated with resting the extensive responsibilitiesof creating a ‘home’ on the shoulders of a very small number of staff. Family participantsnoticed that the quality of the home was significantly influenced by the workload, thepersonality and strengths of the professional caregiver, and the fit between the residentand the setting of care. The quotes below highlight these issues and represent a (focusgroup) conversation among several family members:

Participant 1: There is a difference in personalities and you can see it in the individual [care

provider]. So it’s whatever that individual is made up is what they’re going to get and there’s realvariety . . . I personally don’t agree with the care aides doing everything because you see who likescleaning and who doesn’t; you can see who likes cooking and who doesn’t.Participant 2: I think from watching them, summing it up is that, yeah, the care aides all have

different degrees of ability and caring but I do feel . . . that they have too much on theirplate . . . to be top notch at everything. I watch them and they just seem tired.Participant 3: I know it’s important that they feed them and change them and clean the place and

do all the things they have to do. There are two of them to do it during the day and they workhard. I think . . . it almost doesn’t leave them time for anything else.Participant 4: Each cottage is individual because I’m very happy with the cottage my family

member is in. The food is really good, it smells wonderful in there. The food looks good; they gethuge portions.Participant 3: I’m just thinking more that they’re spread too thin.

Thus, while the care may be consistent with a small number of staff, it is not necessarilyconsistently good.

There was extensive discussion and concern expressed about the systemicinstitutional belief that residents should not be ‘forced’ to do anything, particularly getout of bed in the morning or bathe. While this position respects residents’ autonomy andis consistent with standards for creating a ‘home’ for persons who are cognitively intact, thefamily members questioned its appropriateness for persons with advanced dementia. Thefamily caregivers as a group were very concerned that their residents be encouraged to get upin the morning, get dressed, and partake in three meals. One participant recounted thisexperience:

When she was first there they said ‘Oh, we don’t believe in getting them up if they don’t want to

get up.’ And I said ‘Whoops, wait a minute. If my mother doesn’t get up and have breakfast inthe morning, even if they have to bring it to her in bed, if she doesn’t have that breakfast she’sgoing to go downhill like a rocket. She needs to eat.’

The family members believed it was a staff responsibility to take a stand and be firm ininviting, encouraging, or leading the resident to engage in healthful daily activities. Whilesupporting the belief that residents should not be forced, they did not believe the onlyalternative was letting the resident do what they preferred when it was clearly not in theirbest interest. As one family member put it: ‘What happens when the resident is ‘‘beyondknowing she needs to feed herself?’’’ The participants believed that it was then theresponsibility of the staff to know for her.

14 Dementia 0(0)

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

Family members had varying levels of success when they asked staff to take a firmer standwith their residents. Often the family members themselves got more actively involved inencouraging their residents’ involvement in activities of daily living.

I constantly was asking them to get her involved and they’d say well, well they went up andasked but she didn’t want to go and I said ‘But you don’t ask my mother whether she wants to

go.’ You say ‘Let’s go [name], let’s go and do that’ and get her going but they didn’t.

The informants pointed out that there are important judgment calls in everyday interactionthat require strong interpersonal relationships and education rather than rules.

Outcomes of the cottages as ‘home’. As in the first community, some residents improvedwith their move to the cottages and for several, the improvement was dramatic.

Participant 1: My mother is actually getting better, which is remarkable . . .Her cognitivefunctions are not back totally but they are certainly improved. Her ability to read, watchtelevision, do crossword puzzles has returned to her . . . If you go and sit with her now, it’s

quite a pleasure. You can actually converse with her and this is something we haven’t beenable to do.Participant 2: I really have to say that I’m very, very grateful. You said that your mother is

improving and so has my father. He’s never going to walk again but we can go in and sit and talkwith him now.

Other residents experienced a deterioration of their quality of life related to a decline infunctioning, more falls, isolation, and loneliness. As one family member stated: ‘It’s like theyhave been herded into a place to die . . .No wonder their brains deteriorate’. Some familymembers also described themselves as adrift in the new setting.

In summary, it seems that the cottage model offers some significant improvements in thecare of persons with dementia, but it is not a panacea. The success of the model in creating ahome for the residents was highly dependent upon the individual staff members who neededto be multi-talented, have time to devote to their relationships with both residents andfamilies, and the capability of staff to make informed decisions about the most effectivemanner of delivering individualized care.

Discussion

The results of this study emphasize the centrality of relationships in the quest to create anoptimal environment for persons with dementia who require full-time institutional support.Clearly, from the family perspective, home is both a physical place and an experience of selfin relational connection. The implications of these findings have relevance for institutionaldementia care models and philosophies, particularly in terms of staff training and education.To begin with, attention to family relationships is essential. For many, family involvementwith care does not end with residential placement (Duncan & Morgan, 1994). In the presentstudy, families were highly interactive and deeply involved with staff and residents. Thefamily is therefore positioned to offer education about who their resident is as a person,and to help shape the home (whether ‘home’ or ‘a home’) that evolves following admission.Many of the participant family members recognized staff as their resident’s ‘new family’ but,

Robinson et al. 15

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

at the same time, appreciated the staff’s empathic awareness of their unbroken connectionwith their resident (Sandberg, Nolan, & Lundh, 2002).

Home-likeness is best conceived of as something that is an individually relevant attribute,which is most likely achievable for residents with dementia when relationships are effectivelyfostered. It has been recognized that supportive caregiving practices are critical tomaximizing the therapeutic potential of the home-like environment (Day et al., 2000;Moore, 1999). From the family perspective, it is clear that how we do what we do is asimportant as what we do. Therefore, our research supports the assertion that high qualityelder care is relationship-centred care (Nolan, Davies, Brown, Keady, & Nolan, 2004). Thisapproach is respectful of the ‘uniqueness of each individual, but also the interdependencethat shapes our lives and strives to create a relational environment where all participants aremeaningfully engaged (Nolan et al., 2004, p. 47). A relationship-centred approach isparticularly relevant in the circumstance of advanced dementia as it encompasses respectfor personhood but does not privilege autonomy over interdependence, which wasconsidered problematic by family caregivers (Nolan et al., 2004). Purposeful relationalconnections among residents and staff that offer a sense of security, belonging, continuity,purpose, achievement, and significance are hallmarks of this orientation to care (Nolan et al.,2004).

The operative question becomes one of determining the right conditions for facilitatingthe provision of effective relationship-centred care. There are, of course, some prerequisitesor required contexts without which effective relationships, and thereby creation of home, aremore difficult to achieve. Staff-to-resident ratios, for example, have implications forrelational practice. The guiding argument here is that staff require adequate time beyondthat needed for the completion of basic physical tasks in order to come to know the residentsas persons (Coughlan &Ward, 2007). However, given that relationship-centred practice is anorientation to care which underpins all caregiving acts, it can influence how basic care isprovided even when time is at a premium. While adequate staffing is a necessity, the existenceof adequate staffing does not ensure that systematic, thoughtful relational practice (or otherbest practices) will be enacted. Staff members must have a desire to provide such care (Nolanet al., 2004). Moreover, attention to relationships, which is not apparent in the basic taskscurrently viewed as minimum requirements of care (e.g. meals, bathing, dressing andundressing), should arguably be included on that same list of minimum requirements. Itshould be understood by staff as something that is a necessity, not an ‘extra’ that might bedone if time and energy allow; thus, should be incorporated into care routines at the samelevel of importance as any other basic care practice (Calkins, 2001; McGilton, Pringle,O’Brien-Pallas, Wynn, & Streiner, 2005; McLean, 2006; Slaughter, Calkins, Eliasziw, &Reimer, 2006).

This speaks to the need not only to have in place a care model and an operationalphilosophy that spell out how and why relationship-centred practice is to be implemented,but to the profound importance of effective staff hiring, training and education. In theabsence of effective staff hiring, and ongoing training and education, the potential forbenefit for residents can be seriously diminished. For example, one of the philosophicalprinciples of care in group-living models is that residents’ individual psychological andemotional needs take precedence over the physical aspects of care (Dean et al., 1993,p. 807). In the present study, family members picked up on this idea and were concerned.From their perspective, optimal care is not an either/or situation: care of the whole personrequires attention to both psychological/emotional and physical care in the context of

16 Dementia 0(0)

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

meaningful relationships. Ongoing training and education is essential to such an approach.In our study, families perceived the cottage staff as possessing increased competencecompared to staff in the previous setting, which may reflect the differential emphasisplaced on particular qualitative components of training, such as attention to theuniqueness of the individual. Reflective of the benefits of a focus on dementia careeducation, previous research has found that staff in group-living units demonstratedhigher levels of competence and knowledge in dealing with dementia, and experiencedgreater job satisfaction than their counterparts in traditional nursing homes (Alfredson &Annerstedt, 1994; see also Annerstedt, 1997).

Finally, we wish to emphasize that overall job expectations of cottage staff must take intoaccount the need to establish effective relational connections with residents and familymembers. They need time and space to do so. The creation of home in the cottage settingrests on the shoulders of a small number of staff who, in some ways, are expected to be allthings to all people. Time to talk, smile, and offer comfort through touch or laughter areessential ingredients of home that must be valued and made visible.

Funding

This study was funded by a grant from the Interior Health Authority, British Columbia.

Acknowledgements

The authors wish to thank the family members who so candidly shared their experiences, and the staff

and management of the care facilities for their invaluable assistance.

References

Alfredson, B. B., & Annerstedt, L. (1994). Staff attitudes and job satisfaction in the care of dementedelderly people: Group living compared with long-term care institutions. Journal of Advanced

Nursing, 20, 964–974.Annerstedt, L. (1997). Group-living care: An alternative for the demented elderly. Dementia and

Geriatric Cognitive Disorders, 8, 136–142.

Annerstedt, L., Gustafson, L., & Nilsson, L. (1993). Medical outcomes of psychosocial intervention indemented patients: One-year clinical follow-up after relocation into group living units. InternationalJournal of Geriatric Psychiatry, 8(10), 833–841.

Brawley, E. C. (2006). Design Innovations for Aging & Alzheimer’s: Creating Caring Environments. NewJersey: J. Wiley and Sons.

Briller, S., & Calkins, M. P. (2000). Defining place-based models of care: Conceptualizing care settingsas home, resort, or hospital. Alzheimer’s Care Quarterly, 1(1), 17–23.

Buckwalter, K., Maas, M. L., & Reid, D. (1997). Assessing family and staff caregiveroutcomes in Alzheimer Disease research. Alzheimer Disease and Associated Disorders, 11(Suppl.6), 105–116.

Calkins, M. P. (2001). The physical and social environment of the person with Alzheimer’s disease.Aging and Mental Health, 5(1), S74–S78.

Calkins, M. P., & Marsden, J. P. (2000). Home is where the heart is: Designing to recreate home.

Alzheimer’s Care Quarterly, 1, 8–16.Carboni, J. T. (1990). Homelessness among the institutionalised elderly. Journal of Gerontological

Nursing, 16(7), 32–37.

Robinson et al. 17

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

Chappell, N. L., & Reid, R. C. (2000). Dimensions of care for dementia sufferers in long-termcare institutions: Are they related to outcomes? Journals of Gerontology: Social Sciences, 55,S234–S244.

Coughlan, R., & Ward, L. (2007). Experiences of recently relocated residents of a long-term carefacility in Ontario: Assessing quality qualitatively. International Journal of Nursing Studies, 44,47–57.

Day, K., & Calkins, M. P. (2002). Design and dementia. In R. B. Bechtel, & A. Churchman (Eds.),Handbook of Environmental Psychology. New York: J. Wiley and Sons.

Day, K., Carreon, D., & Stump, C. (2000). The therapeutic design of environments for people with

dementia: A review of the empirical research. The Gerontologist, 40, 397–416.Dean, R., Briggs, K., & Lindesay, J. (1993). The domus philosophy: A prospective evaluation of

two residential units for the elderly mentally ill. International Journal of Geriatric Psychiatry, 8,807–817.

Dobbs, D. (2004). Adjustment to a new home. Journal of Housing for the Elderly, 18, 51–71.Duncan, M. T., & Morgan, D. L. (1994). Sharing the caring: Family caregivers’ views of their

relationships with nursing home staff. The Gerontologist, 34, 235–244.

Frank, J. (2005). Semiotic use of the word ‘home’ among people with Alzheimer’s disease: A plea forselfhood? In G. D. Rowles, & H. Chaudhury (Eds.), Home and identity in late life: Internationalperspectives (pp. 171–197). New York: Springer.

Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitativeresearch. Chicago: Aldine.

Groger, L. (1995). Nursing home can be a home. Journal of Aging Studies, 9, 137–153.

Gubrium, J. F. (1993). Speaking of Life: Horizons of Meaning for Nursing Home Residents. New York:Aldine de Gruyter.

Kelley, L. S., & Tripp-Reimer, T. (1999). Family visitation on special care units. Journal ofGerontological Nursing, 25, 14–21.

Kovach, C., Weisman, G., Chaudhury, H., & Calkins, M. (1997). Impacts of a therapeuticenvironment for dementia care. American Journal of Alzheimer’s Disease, 12, 99–110.

McGilton, K. S., Pringle, D. M., O’Brien-Pallas, L. L., Wynn, F., & Streiner, D. (2005). Development

& psychometric testing of the relational care scale. Journal of Nursing Measurement, 13(1), 51–64.McLean, A. (2006). From commodity to community in nursing homes: An impossibility? Ageing and

Society, 26, 925–937.

Moore, K. D. (1999). Dissonance in the dining room: A study of social interaction in a special careunit. Qualitative Heath Research, 9(1), 133–135.

Nolan, M., Keady, J., & Aveyard, B. (2001). Relationship-centred care is the next logical step. British

Journal of Nursing, 10(12), 757.Nolan, M. R., Ryan, T., Enderby, P., & Reid, D. (2002). Towards a more inclusive vision of dementia

care practice and research. Dementia: The International Journal of Social Research and Practice,1(2), 193–211.

Nolan, M. R., Davies, S., Brown, J., Keady, J., & Nolan, J. (2004). Beyond ‘person-centred’ care: Anew vision for gerontological nursing. International Journal of Older People Nursing in associationwith Journal of Clinical Nursing, 13(3a), 45–53.

Pillemer, K., & Henderson, C. (1998). Building bridges between families and nursing home staff: Thepartners in caregiving program. The Gerontologist, 38(4), 499–503.

Reid, C., Robinson, C., & Cooke, H. (2006). Outcomes Evaluation for Residents in Dementia Cottages.

Kelowna, BC: University of British Columbia – Okanagan.Reimer, M. A. (2004). Special care facility compared with traditional environments for dementia

care: a longitudinal study of quality of life. Journal of the American Geriatrics Society, 52,1085–1092.

Rowles, G. D., & Chaudhury, H. (1995). Home and Identity in Late Life: International Perspectives.New York: Springer.

18 Dementia 0(0)

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from

Sandberg, J., Nolan, M. R., & Lundh, U. (2002). ‘Entering a new world’: Empathic awareness as thekey to positive family/staff relationships in care homes. International Journal of Nursing Studies, 39,507–515.

Slaughter, S., Calkins, M., Eliasziw, M., & Reimer, M. (2006). Measuring physical and socialenvironments in nursing homes for people with middle- to late-stage dementia. Journal of theAmerican Geriatrics Society, 54(9), 1436–1441.

Train, G., Nurock, S., Kitchen, G., Manela, M., & Livingston, G. (2005). A qualitative study of theviews of residents with dementia, their relatives and staff about work practice in long-term caresettings. International Psychogeriatrics, 17(2), 237–251.

van der Voordt, T. (1997). Housing and care variants for older people with dementia. American Journalof Alzheimer’s Disease, 12(2), 84–92.

Carole A. Robinson is the Acting Associate Dean in the Faculty of Health and SocialDevelopment, and the Acting Director of the School of Nursing at the University ofBritish Columbia Okanagan. Her research and practice interests focus on assistingfamilies to live well with chronic and life limiting health problems.

R. Colin Reid is an Assistant Professor in Health Studies at the University of BritishColumbia Okanagan. He has particular interests in quality of care and quality of lifeoutcomes for institutionalized seniors with dementia.

Heather Cooke, MA is a PhD student at the Centre of Aging, University of Victoria, BritishColumbia, Canada. Her research interests include staff caregiving practices in long-termcare, therapeutic design of environments for individuals with dementia, and long-termcare policy. Address: University of Victoria, Sedgewick Building, RM A123, PO Box1700, STN CSC, Victoria, BC, Canada, V8W 2Y2 (email: hcooke@uvic.ca) She is anauthor on the article as she was a research coordinator/assistant on the project.

Robinson et al. 19

at University of British Columbia Library on September 15, 2010dem.sagepub.comDownloaded from