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Doing as much as I can do: The meaning of activityfor people with dementiaAlison Phinney a , Habib Chaudhury b & Deborah L. O’connor ca School of Nursing, University of British Columbia , Vancouver, Canadab Department of Gerontology , Simon Fraser University , Vancouver, Canadac School of Social Work and Family Studies, University of British Columbia , Vancouver,CanadaPublished online: 25 Jun 2007.

To cite this article: Alison Phinney , Habib Chaudhury & Deborah L. O’connor (2007) Doing as much as I can do: Themeaning of activity for people with dementia, Aging & Mental Health, 11:4, 384-393, DOI: 10.1080/13607860601086470

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Aging & Mental Health, July 2007; 11(4): 384–393

ORIGINAL ARTICLE

Doing as much as I can do: The meaning of activity for people

with dementia

ALISON PHINNEY1, HABIB CHAUDHURY2 & DEBORAH L. O’CONNOR3

1School of Nursing, University of British Columbia, Vancouver, Canada, 2Department of Gerontology,

Simon Fraser University, Vancouver, Canada, and 3School of Social Work and Family Studies, University of British

Columbia, Vancouver, Canada

(Received 30 March 2006; accepted 21 August 2006)

AbstractWhile it is assumed that persons with dementia benefit from being involved in meaningful activity, research examining thisclaim is limited. In particular, how individuals with dementia perceive this involvement is poorly understood. Therefore, thepurpose of this research is to determine what constitutes meaningful activity from the perspective of persons with dementia,and to explore how they perceive its significance in their lives. We conducted an interpretive phenomenological analysis ofmultiple interviews and participant observation conducted with eight community-dwelling elders with mild to moderatedementia. For several participants, the single most important driving force in their lives was being active, doing as much asthey possibly could. They were involved in a wide range of activities including leisure pastimes, household chores, work-related endeavors, and social involvements. These activities were meaningful in three ways: Through their involvement,participants experienced feelings of pleasure and enjoyment; felt a sense of connection and belonging; and retained a senseof autonomy and personal identity. Findings suggest that familiarity of the social and physical environment promotesinvolvement in activities. This provides a sense of continuity for people with dementia, with implications for their quality oflife and personhood. Further implications of these findings for dementia care and future research are discussed.

Introduction

Little is known about the perceptions of individualswho have been diagnosed with progressive dementia— what it means to them to have this diagnosis, howthey experience their lives changing, and how theyrespond to these changes (Downs, 1997; Phinney,2002). Instead, most research has been based onreports of caregivers and clinicians, with an emphasison the psychosocial, functional, and behaviouralconsequences of the disease. In particular, the issueof meaningful activity as experienced by persons withdementia is poorly understood. While it is thoughtthat persons with dementia benefit by being involvedin activities that are personally significant, researchexamining this claim is very limited (Marshall &Hutchinson, 2001). Therefore, the overall purpose ofthis study was to identify what constitutes meaningfulactivity from the perspective of persons withdementia.

Background

Meaningful activity in dementia

Activity theory has long held that older adults whoremain engaged in the world around them experienceincreased levels of psychological and physical wellbeing as compared to those who are less involved(Havighurst & Albrecht, 1953). This position hasbeen influential in the field of dementia care wherethe concept of meaningful activity has becomeubiquitous. Health care professionals and researchersalike have placed great value on the idea that activitycan be beneficial for persons with dementia (Bazan-Salazar, 2005; Dowling, 1995; Nolan, Ryan,Enderby, & Reid, 2002). However, critical reviewsof the literature have indicated that there is limitedconceptual development and empirical support toconfirm this position (Miller & Butin, 2000;Occupational Therapy Evidence-Based PracticeResearch Group, 1999). Since the time of these

Correspondence: Alison Phinney, School of Nursing, University of British Columbia, T201-2211 Wesbrook Mall,Vancouver, BC V6T 2B5, Canada. Tel: þ1 604-822-7484. Fax: þ1 604-822-7466. E-mail: phinney@nursing.ubc.ca

ISSN 1360-7863 print/ISSN 1364-6915 online/07/040384–393 � 2007 Taylor & FrancisDOI: 10.1080/13607860601086470

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reviews, published reports have continued to appear,describing the effects of therapeutic initiatives invol-ving art, music and recreational activities. However,these interventions have tended to be evaluated interms of their impact on observed behavioural andemotional responses (Kinney & Rentz, 2005;Kolanowski, Litaker, & Baumann, 2005; Politiset al., 2004; Schreiner, Yamamoto, & Shiotani,2005; Sherratt, Thorton, & Hatton, 2004; Sung &Chang, 2005). The question of the meaning of theseactivities for people with dementia has not beendirectly addressed. Moreover, most of this researchhas been conducted in formal care settings withseverely impaired individuals, even though themajority of people with dementia live in their ownhome. Therefore, how people with less advanceddisease engage in activities, and how they perceive thesignificance of this involvement, remainimportant gaps in current knowledge (Miller &Butin, 2000).

The perspective of persons with dementia

This research is grounded in a small but growingliterature that seeks to describe the experience ofpersons with dementia. Most reports have beenbased on qualitative analyses of open-ended con-versations conducted with the individuals them-selves. While few studies have examined the questionof meaningful activity directly, persons with demen-tia commonly lament being unable to participate inactivities such as working, driving, and leisurepastimes (Acton, Mayhew, Hopkins, & Yauk,1999; Burgener, Shimer, & Murrell, 1993;Burgener & Dickerson-Putman, 1999; Harris &Sterin, 1999; Menne, Kinney, & Morhardt, 2002;Snyder, Quayhagen, Shepherd, & Bower, 1995;Snyder, 2001). They often feel lonely and aban-doned, expressing that they feel increasinglyremoved from intimate family relationships andsignificant social interactions (Burgener et al.,1993; Burgener & Dickerson-Putman, 1999; Harris& Keady, 2004). They find everyday tasks increas-ingly difficult (Nygard & Ohman, 2002; Phinney &Chesla, 2003), and may also worry that they willeventually lose the ability to engage in basic self-careactivities like bathing and dressing (Phinney, 2000).

In the face of these losses, people do what they canto maintain their involvement in everyday activitiesand important personal relationships (Acton et al.,1999; Burgener & Dickerson-Putman, 1999; Parse,1996; Phinney, 1998; Truscott, 2004). Most ofthese reports have emphasized ‘self-help’ strategiessuch as allowing more time to complete a task, orwriting reminder notes. There are also suggestions inthe literature that family members play an importantrole in helping people cope (Nygard, 2004; Phinney,2006). While there is no research that directlyexamines the potential benefits of meaningfulactivity, recent findings mention the possibility that

involvement in activity by persons with dementiamay improve their well being and quality of life(Brooker & Duce, 2000; Havighurst & Albrecht,1953) and sustain their sense of identity (Harris &Sterin, 1999; Kitwood, 1997; Lyman, 1998; Menneet al., 2002; Sabat, 1998).

Study purpose

Given the limited research in this area, the purposeof this study was to explore how people with mild tomoderate dementia perceive and understand mean-ingful activity in the context of their everyday lives.We asked two specific research questions:

(1) What types of activities do people with mild tomoderate dementia identify as important in theireveryday lives?

(2) What does their involvement in these types ofactivities mean to them?

For the purpose of this exploratory research, weconceptualized meaningful activity in broad terms asthe ‘spectrum of occupations a person performs inhis or her everyday life’ (Persson, Erlandsson,Eklund, & Iwarsson, 2001) that are perceived assignificant to the person.

Methods

Design and sample

This study was part of a larger qualitative investiga-tion of how people with mild to moderate dementiaexperience and cope with their symptoms in thecontext of everyday life. It was a naturalistic designinvolving repeated interviews and observations con-ducted over several months with each participant.Drawing on the tradition of interpretive phenome-nology (Benner, 1994), this research focused on theimpact of symptoms on everyday habits and prac-tices, and the meaning of these changes (Phinney,2000; Phinney & Chesla, 2003). Given this overallfocus, it was possible to conduct further analyses toexplore specific questions related to meaningfulactivity.

For the overall study, a purposive sample of ninepersons with Alzheimer’s disease was recruitedthrough a geriatric research center and an earlydiagnosis support group. To qualify to be in thestudy, each participant had to be 60 years of age orover, and living at home with at least one familymember. In addition, they had to have mild tomoderate impairment as indicated by a score of 5 orless on the Global Deterioration Scale (Reisberg,Ferris, Deleon, &Crook, 1988). Study visits occurredin the home, and informed consent was obtainedfrom both the person with dementia and the familymember. Consent processes were repeated at sub-sequent visits to ensure that people continued to

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understand the details related to their participation inthe study.

Data collection

Three in-depth conversational interviews (vanManen, 1997) were conducted with eight partici-pants over a period of two to six months. (Oneperson withdrew after completing only one inter-view. Since this interview did not specifically addressactivities, this participant was excluded from thecurrent analysis). Participants were asked open-ended questions about what it was like to live withthis disease and how they experienced its impact ontheir everyday activities. All participants wereencouraged to relate narrative accounts of actualsituations rather than engage in abstract discussionsof generalized situations (Benner, Tanner, & Chesla,1996). Interviews lasted from 45–100 minutes, andwere tape-recorded and transcribed verbatim.

In addition, four to six hours of participantobservation were conducted with each participant,and field notes were written immediately after eachsession to describe in careful detail the widespectrum of everyday activities that people wereinvolved in. The purpose of these observations wasnot to determine how ‘correct’ the person was whenthey described their experiences in an interview, butrather to provide another window on their involve-ment in everyday habits and practices. This wasespecially important given that many of these kindsof experiences would be difficult to describe in aninterview, either because they were so much a part ofdaily life that they were taken for granted, or theywere forgotten. These observational data were usedin this study as additional information to support adeeper and more comprehensive interpretation.Family members were also interviewed separately,although these data were not used in the analysis forthis current study.

Quantitative measures were used for descriptivepurposes to characterize the person’s level ofcognitive and functional impairment. Theseincluded the Mini Mental State Exam (MMSE)(Folstein, Folstein, & McHugh, 1975), the GlobalDeterioration Scale (GDS) (Reisberg et al., 1988),the Physical Self Maintenance Scale (PSMS), andthe Instrumental Activities of Daily Livingscale (IADL) (Lawton & Brody, 1969).These measures have all been used extensively indementia research and have established reliabilityand validity.

Data analysis

Data analysis followed techniques for developing aninterpretive account as described by Benner andcolleagues (Benner, 1994; Benner et al., 1996;Chesla, 1994). First, transcripts were reviewedwhile listening to the audio tapes in order tomake corrections to the text and document

additional non-verbal information (such as changesin verbal tone and emotional expressions).Names and other identifying features were changedat this time.

Second, a series of analytic questions was devel-oped to serve as a guide for the interpretive analysisof the data for a single individual. These were basedon both the initial research questions and the lines ofinquiry that were emerging from the data, forexample: ‘What are the everyday activities of thisperson with dementia?’ ‘How have these activitieschanged since the onset of the dementia?’ ‘What is atstake for this person as their activities are changing?’These and other related questions were used tointerrogate the interview transcripts and field notesfor a single individual. The questions were answeredfirst with detailed descriptions and subsequentlywith in-depth interpretations, using excerpts fromthe data as evidence to support this first stage ofanalysis. This detailed in-depth process was repeatedfor three individuals.

Analysis continued by carefully reading the sub-sequent interviews and field notes for similar andcontrasting themes. Comparisons were made bothacross and within individuals, all the while writingdetailed interpretive notes in order to clarify patternsof experience and their meanings.

The resulting account comprises a description ofthe types of everyday activities that people engagedin, and an interpretation of what these activitiesmeant to them. This interpretation is based on athematic analysis of three distinct types of meaningswith exemplars drawn from the interpretive writingand the data itself to highlight qualitative distinctionsand illustrate particular nuances of meaning(Benner, 1994).

Enhancing credibility

While there is no set of objective procedures that canensure the ‘reliability and validity’ of an interpretiveaccount (Benner et al., 1996), certain steps weretaken to enhance the credibility of the findings. First,since interpretation occurs within the context of a‘hermeneutic circle’, the study was designed toreflect the best initial understanding of the phenom-enon (Packer & Addison, 1989). Participants wereincluded who seemed to have varying degrees ofinvolvement in activity in order to elicit as broad arange of experience as possible. Data were gatheredcarefully and systematically, focusing explicitly onthose phenomena identified at the outset as being ofinterest, but at the same time, being as open aspossible to new understandings and practices asrevealed by the participants. Using multiple sourcesof data provided different access routes to these newunderstandings (Benner et al., 1996).

Second, throughout the analysis, the raw data andemerging interpretations were read carefully bycolleagues who were experts in the subject area

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and methodology. These readings provided the basisfor thoughtful and rigorous discussions that weregrounded deeply in the text and focused on creatingthe best possible account of the meaning of the data.This is based again on the idea of the hermeneuticcircle, where the final goal of interpretation is not todevelop a ‘truthful portrayal’, but rather to develop aclearly articulated, plausible account of somethingthat was before obscured and puzzling (Packer &Addison, 1989).

Findings

Sample description

The study participants were four men and fourwomen between the ages of 64 and 88 years who hadbeen diagnosed with Alzheimer’s disease. Accordingto family estimates, people had been experiencingsymptoms of dementia for an average of seven years(range¼1.5–17 years), and had been diagnosed onaverage two years (range¼ 0.5–4 years) previous totheir study participation. Their MMSE scoresranged from 16 to 23 (M¼ 19.3, SD¼2.65). GDSscores were either 4 (n¼ 3) or 5 (n¼ 5). People weredependent on an average of 1.2 activities of dailyliving (SD¼ 0.83) and 5.8 instrumental activities ofdaily living (SD¼ 2.82). These scores are consistentwith mild to moderate levels of cognitive andfunctional impairment. While participants were notasked explicitly about concurrent illnesses, overallthey were a healthy group who had no obviousphysical disabilities.

This group was relatively homogenous withrespect to socioeconomic status and ethnic back-ground. All were of European descent and born inthe United States. They all lived in their own homewith at least one family member, usually a spouse.All the participants had completed high school, andsix had a college or university education. Theiroccupational backgrounds were varied, althoughmost had had professional involvement of somekind before retiring from the workforce.

Types of activity

All of the participants engaged in activities they feltwere important. For some, this was a central drivingforce in their lives. One woman spoke repeatedly ofher ‘very, very full and busy life’, emphasizing thatwhat kept her going was the desire to stay involved inthe normal activities of everyday living. ‘I want to doeverything I can for as long as I can’, she said.

The following is a descriptive analysis of the fourtypes of activity people were involved in: (1) leisureand recreation; (2) household chores; (3) socialinvolvements; and (4) work-related activities. Itdescribes the range of activities in each category,how the nature of these activities was changing as thedementia progressed, and how people coped with

these changes. Pseudonyms are used and identifyinginformation has been deleted in order to promoteanonymity.

Leisure and recreation. Leisure and recreationalactivities were mentioned by all the participants.People continued to engage in favourite hobbiessuch as handicrafts, playing piano, stamp collecting,crossword puzzles, or going for long walks. Whiletheir family members often noted that their involve-ment was more limited than before – they wereaccomplishing less and some activities were fallingby the wayside — the participants themselves did notseem to feel there had been much decline in theirleisure and recreational pastimes. Sandra was typicalwhen she said, ‘I’m essentially doing all the things Idid before my diagnosis.’ Some had even taken upnew activities. For example, Roy was attending anexercise class twice a week, and Christina hadreturned to studying English Literature as she haddone many years before.

While many of these activities were solitarypastimes, others involved friends and family. Tomexplained how he and his wife were driving into thecity so they could attend a performance of Wagner’sRing Cycle. It was music he had loved for manyyears and he was gleeful as he described their plans.‘[It’s] the whole thing - about five hours. It is purejoy!’ Others went out to the movies with friends orfamily members, and one couple continued to traveltogether as they had done for many years. While tripsto Europe had become more challenging, they hadagreed that this was important to them both, so theywere starting to seek travel opportunities that werecloser to home.

Household chores. As mundane as they might firstappear, household chores were extremely importantto people in their everyday lives. When asked abouthow they spent their day, participants spoke withconsiderable enthusiasm about making their bed,helping prepare meals and washing dishes, ironingclothes, vacuuming, yard work, and running errands.Of course, this was not always easy and they oftenrequired assistance. In many cases people did chorestogether with a family member, drying the disheswhile the other washed, or doing the groceryshopping together. Others relied on notes left bytheir family members to remind them of what had tobe done that day, or they found ways to engage inchores in a simpler, less demanding fashion. Ifsomeone could no longer prepare a meal, they mightstill cut the vegetables, and if they could not sort thelaundry, they might still move clothes from thewasher to the dryer. Never did people speak ofwanting to give up these tasks. Rather, theyemphasized how much it mattered to them to beable to continue in these kinds of activities, even if itmeant they had to use different strategies thanbefore.

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Social involvements. Social activities were importantfor most of the participants, although not always tothe extent their families expected. For example, onedaughter made sure to get her mother out to churchevery week feeling that the social contact wasimportant. However, on the day the researcherattended with them, her mother seemed not inter-ested or engaged, nor did she ever speak of this as animportant activity in her life.

While some of the participants continued to visitwith friends, this was happening less often, and theyoften expressed a certain discomfort with theseactivities. Sometimes this was due to their lack ofease with conversation. For instance, Jim found itdifficult to follow what people were saying, and wasreluctant to contribute for fear that he would saysomething wrong, embarrassing himself and theothers. While he continued to greet his neighbourswhenever he was out, he tended to avoid getting intolong conversations. Visits with friends were alsofalling by the wayside as the activities that had drawnthem together (playing cards, golf, etc.) were nolonger possible.

The social involvements that people did findparticularly meaningful were their interactions withother people affected by dementia through supportgroups or day centres, and also their continuedcontact with family members. Roy for example,explained how he appreciated hearing the stories ofother people in his support group as he realized thathe was not alone in his experiences. He felt safe andreassured when he attended these meetings. Formost of the participants, family members alsoprovided opportunities for meaningful interactions.By taking part in family activities, talking on thephone with their children and grandchildren, orsimply spending time with one another, peopleappreciated the comfortable companionship ofbeing with those they loved, and who loved them.

Work-related activities. Given that all the partici-pants had retired from paid employment, few hadmuch to say about work-related activities. However,there were two participants for whom this was theirmost meaningful involvement. The strongest exam-ple of this was Bob, who had been a choralconductor and arranger and a professor of music.While he had been retired for many years, theseactivities continued to be a part of his life. He hadrecently conducted a choir at a college reunion, andwas continuing to play music at home and arrangesimple scores of choral music. His plan was tointroduce a few songs at an upcoming Alzheimer’ssupport group meeting, in the hope of conducting asmall chorus of interested group members. Anothergentleman who had been a teacher spoke of how hecontinued in that role, watching over others whowere doing yard work that he himself could do nolonger, offering guidance and advice. ‘I’m in the old

habit of being a schoolteacher and watching whateverybody does’ he explained.

The meaning of activity

In order to address the second research question,‘What does their involvement in these activitiesmean to them?’ the following three themes weredeveloped through an interpretive analysis: (1)enjoyment and pleasure; (2) connection and belong-ing; (3) autonomy and identity. This analysisaddressed such matters as why people were involvedin the activities, what was the purpose, and what wasat stake? What did they achieve and what was it thatallowed them to achieve these ends?

Enjoyment & pleasure. Perhaps the most obviousreason that people engaged in activities was that theybrought enjoyment and pleasure for them. Maggiepointed at the piano in the corner of her smallkitchen and in halting words explained: ‘If I’m homealone there, if I remember, I’ll go try and, even,I don’t care what it is, just play something on thepiano.’ When the interviewer asked her what that didfor her, she quickly answered: ‘It makes me feelgood. It’s something that I like, I love it.’

In addition to playing piano, Maggie explainedhow ‘every day I look forward to going for walks.’When asked why, she replied, ‘I don’t have to do

anything. I just walk. I go places by myself and I canenjoy it without having to talk about it. So I just wantto keep being able to walk, and do things, and uh,that’s all, really.’

Maggie spoke often of how she was ‘glad to bealive’, and in speaking of her future said, ‘I hope weare able to do things and not just feel sorry forourselves. I’d like to live to be 100.’ She recognizedthat the Alzheimer’s would only get worse, butmostly she turned away from her fears of the futuretoward activities that brought her pleasure. Byfinding enjoyable things to do, she was able to say‘I’m still alive and that’s (little laugh) you know, ‘‘Sowhat? It’s not so bad. I can still get along.’’’

Maggie was able to do this in large part becauseshe inhabits a familiar world that solicits herinvolvement. Her neighbourhood and the piano inthe kitchen are examples of how familiar spaces andobjects solicit involvement, serving as cues foractivities that have always brought enjoyment andpleasure. Maggie was also able to enjoy herselfbecause she engaged in activities that did notdemand too much of her. They did not require herto think or talk, and she could do them alone and notfeel embarrassed if things went wrong. Sandra alsospoke of how activity was her ‘saving grace’,explaining that ‘when I’m busy, when I’m active,I don’t really think about [the Alzheimer’s].’ Sandrafelt she could easily fall into depression, but by beingabsorbed in smooth-flowing everyday activity, she isnot led to reflect on her situation and consider the

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possibility that she is declining. Instead, she isimmersed in the pleasure of the moment, enjoyingactivities that have always been important andmeaningful.

Christina was another participant who spoke ofactivity as a way to enjoy her life despite having adevastating illness. ‘I hope that I could stay at thisstage (of the disease) for as long as possible because Iam enjoying myself. I have this dog, and I have threegrandchildren who live just down the way and I canwalk the dog to the grandchildren. We go out and wehave muffins at the cafe and I play Monopoly withRebecca and she beats me all the time!’ InChristina’s words we hear about the importance ofrelationships, of being in a community that permitsher continued involvement with family and friends.She can step out the door and find her way aroundher neighbourhood to meet with her daughters, hergrandchildren, and her friends who live nearby. Sheis not isolated at home, but rather dwells in a socialand physical environment that is familiar andwelcoming, an environment that affords involvementin enjoyable pastimes.

Connection and belonging. This example ofChristina playing with her granddaughter alsosuggests how being involved in activity allowedpeople to feel that they were still a part of theworld around them; they were not being left behind.Tom recognized that there were many things hecould no longer do because of his dementia, and wasconcerned that this meant he was ‘losing the temperof the world — that people are in activities thatI don’t participate in.’ In other words, being activewas important because it meant that he was a part ofa larger community. He spoke of how his familyplayed a significant role in his life by reminding himof what he could still do, and creating opportunitiesfor him to stay engaged in activities, thus providingfor him this sense of continued connection andbelonging. For example, every morning his wifeleaves him a note with instructions and schedules forthe day. Tom explained that having this writtendown enables him to plan his day, so he cansupervise the workers who were building a fence inhis backyard, run errands in a nearby town, or go tochurch with his son. The notes are important heexplained because ‘I have people reminding mealways that I’m busy, I have something to do.’ He issurrounded by people who, through their guidingactions, allow him to continue as an active partici-pant in the world.

Bebe was another study participant who hadalways been a busy person, an active volunteer andaccording to her daughter, an incomparable home-maker. But as she grew older and her dementiaadvanced, she was doing less and less. Most days shespent in her house sitting quietly, or walking slowlyabout her living room, looking at photographs,lightly dusting surfaces, and peering out the windows

into her backyard. She expressed little interest in hersurroundings and often lamented that there wasnothing for her to do around the house and that shehad trouble finding things to keep her busy. ‘I needto do something’, she said, and then added ‘Sowhere would I go? What would I do? There’s noactivity. So you just sit, and that is boring.’ However,things were markedly different when she attendedher day care centre twice a week. She took part inrecreational activities with the other group members,and when lunchtime approached, the staff welcomedher into the kitchen where she helped preparesandwiches and set the table. By being useful andengaged in the activity of the centre, Bebe felt astrong sense of belonging that was reflected in hercomment overheard by the researcher as she arrivedone morning. Handing her coat to a staff member,she looked around smiling and said, ‘Ah, home sweethome.’ While Bebe often seemed rather lost and ill atease in her own house where she could find nothingto do, at the day care centre, where the socialenvironment was one that afforded her opportunityto contribute in meaningful ways, she felt very muchat home.

Autonomy and identity. An important meaning ofactivity for many of the participants was reflected inhow it allowed them to retain a sense of personalautonomy. For Sandra, this was a predominant storyline. By staying busily involved in her everydayactivities, she continued to feel herself as anindependent and responsible woman. She insistentlycarried out all her household responsibilities on herown, saying, ‘The only way I feel I have lost myindependence is through driving. . . . I feel quiteindependent otherwise, like you know, I do all ourusual activities. . . I care for myself, I care for thehouse, I pay the bills.’ Being on her own and able tolook after herself has always been important toSandra, and she speaks of how she is ‘fighting back’against the dementia by staying busy, ‘doing every-thing I can for as long as I can.’

For Sandra, such activities are constitutive of hervery personhood. To be fully human in her eyes isto be capable of engaging in all the ‘usual activities’of a normal life. As she explained:

[It is] all the things we call human . . .being able toget up in the morning and be able to engage in allthe usual activities (pause). Do all those thingsthat are necessary for living. Cooking, cleaning,paying bills, uh, visiting with friends, that sort ofthing, uh. You know, just being able to recallenough to function in an everyday uh situation.

As long as she is able to be fully human in thissense of being able to independently perform hereveryday activities, Sandra feels her life to bemeaningful and worth living.

Through their involvement in activity, people alsoretained a sense of their personal identity. This was

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particularly important for those who focused onwork-related activities. Bob for example, by remain-ing involved in the world of music, continued to feelunaffected by the dementia. Even in the face of theprofound changes that have taken place in his life, hefelt a sense of wholeness and meaning when heconsidered his current involvements. By being ableto perform as a musician, there was something abouthim that the Alzheimer’s could not touch.

I have a little electric organ that I can use if I wantto create music. I can create music all right. I canarrange stuff and harmonize stuff. That is justingrained in me. I don’t think that Alzheimer’s isgoing to hurt that.

People’s involvement in activity also allowed themto live up to their roles in the family. Jim, through hisinvolvement in household activities was continuingto help his disabled wife, thus retaining his identityas a husband and helpmate. And Roy explained howby remaining active, he was a good father figure forhis children, demonstrating to them how he was notletting the dementia ‘get him down’. This wasimportant he explained because ‘I think they lookat the father as being somebody that’s capable, andthen they want to be capable. And at least you’dserved a good example.’ By remaining active, he wasliving up to his identity as a parent.

Discussion

This study has shown how through doing, peoplewith mild to moderate dementia find their lives to bemeaningful. Participants in this study were involvedin a variety of everyday activities including leisureand recreational pastimes, household chores, socialinvolvements and work-related activities. Throughtheir involvement in these activities, they foundmeaning in the pleasure and enjoyment theyexperienced, in their feeling that they still belongedin the world, and in their ability to retain a sense ofautonomy and identity.

These results bear a striking resemblance tofindings from research with adults without dementia.Bryant, Corbett, and Kutner found that meaningfulactivity was a central theme in the narratives of olderadults who defined healthy aging as ‘going and doingsomething meaningful’ (Bryant, Corbett, & Kutner,2001). People felt their health benefited when theyhad the ability and resources to be involved inactivities that were important to them. There isfurther evidence suggesting that being involved inmeaningful activity allows older adults to betteradapt to difficult circumstances and experience asense of well being (Lysack & Seipke, 2002;McIntyre & Howie, 2002; Ritchey, Ritchey, &Dietz, 2001), while others have argued thatactivity provides a sense of belonging and sustainedidentity (Christiansen, 1999; Hagerty, Williams,

Coyne, & Early, 1996; Lysack & Seipke, 2002;Purves & Suto, 2004).

It might appear on the surface that the onset ofdementia does not dramatically affect how peopleperceive the significance of activity in their lives.Overall themes are similar, implying that beinginvolved in activity is meaningful as it has alwaysbeen. This is supported by research showing thatpeople’s activity preferences do not change as theybecome demented (Kolanowski & Richards, 2002).It may be that activity provides a sense of continuityfor people with dementia by allowing them to feelthat their lives are fundamentally unchanged as longas they can still do those things that matter most tothem. And it is not simply their lifestyle that isunchanged, but their very sense of self. Christiansenhas argued that ‘identities are closely tied to what wedo’ (1999, p.549). When faced with the cognitivelosses that come with dementia, people may seekactivity as a way to sustain their sense of self throughhabitual, taken-for-granted daily routines.

At the same time that activity provides a sense ofcontinuity, it is important to recognize that people’ssituations do change with dementia. Being involvedin activity is undoubtedly more challenging forpeople with dementia, given the cognitive andperceptual decline that accompanies the disease,not to mention how societal and institutionalpractices can serve to limit opportunities for theirinvolvement (Moore, 2004; Nolan, Grant, & Nolan,1995; Orona, 1990; Powers, 1995). And yet, theseparticipants did stay engaged in everyday life. Whatwas it in their situations that created this possibilityfor them?

While this study did not set out to answer thisquestion directly, findings suggest that the familiarityof the situation is an important factor supporting thecontinued involvement in everyday activity by peoplewith mild to moderate dementia. Of course, thebenefit of familiarity is not limited to this population,although it is likely to be particularly important giventhe unique challenges people with dementia face asthey find themselves slowing down and everyday lifebecomes ‘hard work’ (Phinney & Chesla, 2003). Theimpact of these changes may be lessened when theperson is in a familiar place, surrounded by familiarobjects, engaging in activities that have long beenpart of their life.

From what is known about procedural memory,we might expect that even when people withdementia do not know that they have done anactivity (being unable to remember or explain theirinvolvement), they may still know how to do it, acapacity that could be supported by a familiarenvironment (Son, Therrien, & Whall, 2002;Zanetti et al., 2001). Indeed this is evidenced inthis study when someone like Maggie could notexplain where she goes on her walks, and yet shewent everyday, always finding her way. While herability to reflect on her experiences was becoming

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increasingly limited, the familiarity of her situation— the neighbourhood where she had lived for manyyears, her lifelong habit of going for long walks, andher ready access to common everyday tools such ashouse keys and a bus pass — together, these openedthe possibility for Maggie to continue engaging in anactivity that she has always enjoyed.

In part her pleasure comes from the fact that shedoes not need to think about walking — in herwords, she ‘just does it’. Her experience highlightshow the familiarity of everyday situations allowsactivity to not be ‘hard work’ but rather to besmooth-flowing and unreflective, experienced by theperson as demanding little effort. Rowles (1983) hasused the term ‘physical insideness’ to describe howolder adults over time develop an embodied under-standing of their living environment, moving abouttheir homes and communities in a taken-for-granted,unreflective way by virtue of their deep familiaritywith the geography of these domestic spaces. Afamiliar world invites or solicits involvement suchthat over time, activities become entextured in thebody, quite literally incorporated as the habits andpractices that constitute everyday life. While theseeveryday activities are often overlooked as a source ofmeaning, they may bring pleasure and enjoyment topeople’s lives through their physical insideness that isexperienced as ‘restorative’ (Jansen & von Sadovsky,2004), providing comfort and a feeling of being atease in the world (Rubenstein & Parmalee, 1992).

Significance and implications

The issue of meaningful activity has usually beenconsidered in the context of facility care, althoughpeople with dementia have themselves observed thatinvolvement in activity is beneficial for those in theearliest stages of the disease as well (Jackson, 2005;Selbie, 2005; Truscott, 2004). The findings fromthis study provide preliminary empirical support forthis claim by showing the variety of ways that peoplewith mild to moderate dementia find everydayactivities to be meaningful. These results suggestthat providing opportunities for personally mean-ingful activity should be an important aspect ofdementia care, not only in facilities, but also inpeople’s homes and communities. More than justleisure pastimes, these might include a broadspectrum of everyday activities that allow peoplewith dementia to not only enjoy themselves, but alsoto feel they are a part of their family and commu-nities, and that through their involvement, they areretaining a sense of self. These are not abstractthemes that are of interest only to theorists, butrather they are concrete indicators of key clinicaloutcomes including quality of life and personhood.For example, recent research by Cohen-Mansfield,Parpura and Golander (2006) provides clear evi-dence that activities for nursing home residents aremore beneficial when they are tailored to each

individual’s self-identity. Clearly the meaning ofthe activity for the individual, even in more advanceddementia, has important clinical implications.

While this study did not attempt to identifypotential interventions, the findings do suggestcertain possibilities that might be explored infuture research. For example, the fact that activitiesmatter most to people when they are intrinsicallymeaningful in the context of past experience andeveryday life suggests that what is important is theopportunity to be involved in the kinds of activitiesthey enjoyed before the dementia. Family membersare likely well positioned to identify such opportu-nities, given their knowledge of the person’s history,while an ‘activity biography’ may be a useful tool tosupport care planning by care providers and clini-cians who are unfamiliar with the person’s past.

These findings reveal how supporting meaningfulactivity is also a matter of creating a familiar socialand physical environment that allows activity tohappen in a way that is spontaneous and flexible,that provides natural cues for familiar activities andis responsive to the fluctuating demands of everydaylife. A structured activity imposed on the person’sdaily routine, without taking into account theindividual’s history of meaningful activities, may beless meaningful than one that emerges from thehabitual rhythms and patterns of daily living.

Of course, knowing how to support this kind ofinvolvement is the question that remains. A previousanalysis of these data has taken a first step towardidentifying how families keep people with mild tomoderate dementia involved in meaningful activityby making activities easier, providing directions andreminders, and doing activities together (Phinney,2006). However, further research will be necessaryto explore more broadly how families and commu-nities can create possibilities for continued involve-ment by people with dementia even as they becomemore impaired. Further research might also explorein more detail how activity contributes to a sense ofconnection and belonging. These kinds of outcomeshave not been adequately explored in the literature,but would seem to be an important aspect of qualityof life and personhood for people with dementia.

Study limitations

Given that this was a small and well-educatedsample, and findings were based on a secondaryanalysis of data that were collected for a differentpurpose, this study cannot claim to have presented acomprehensive picture of all possible activities andmeanings for people with dementia. While theparticipants had much to say about the importanceof activities in their everyday life, describing whatthey did and why they did it, there is clearly a needfor further targeted research in this area to explorethese issues in greater depth with a more diversesample. In particular, this study was not able to

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address the important question of how peopleactually do these activities, and how they cope withtheir changing abilities as the dementia progresses.

Conclusion

These findings, while not exhaustive, provide apreliminary understanding of the meaning of activityfrom the perspective of persons with mild tomoderate dementia. The existing literature hasbeen quick to ask how meaningful activity can bean effective intervention without understanding whatit is in the first place. A first-person account offersan important point of view that must be taken intoconsideration when trying to understand this phe-nomenon and develop opportunities for involvementby people with dementia. Overall, this study hasshown the importance of understanding activity inthe context of the person’s past experience, focusingon what is familiar in their life in order to sustain asense of continuity despite the changes resultingfrom the dementia. While this study has focused onthose who are living at home, findings will poten-tially inform understanding and practice in bothcommunity and facility care settings.

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