Current Topics in Care

Meaningful Activity for Persons With Dementia: Family Caregiver Perspectives

American Journal of Alzheimer’s Disease & Other Dementias® 2015, Vol. 30(6) 559-568 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317515576389 aja.sagepub.com

Kaitlyn P. Roland, PhD1, and Neena L. Chappell, PhD, FRSC, FCAHS2

Abstract Dementia threatens the capacity to engage in activity, suggesting meaningful activity may be helpful for persons with dementia (PWDs). This study explores the concept of meaningful activity, as defined by caregivers of PWDs. Family caregivers of PWDs, who provide 3 hours of care over 3 days/week, were interviewed after 6 months of cholinesterase inhibitors (ChEIs) therapy. Caregiver responses (N ¼ 906) to the open-ended question What do you believe getting involved in activities outside the home means for someone with dementia are assessed. The themes are analyzed in terms of content, frequency, co-occurrence, and dementia severity. Caregivers emphasize the benefits of social connectedness, physical health, and mental stimulation. Activity is also viewed as respite, difficult, and has no meaning for care recipient. The implications of activity for self- and social-identity in PWD and caregiver are discussed. The benefits of activity varied by stage of disease. This knowledge indicates areas for improved activity provision and health care support. Keywords social engagement, stimulation, self-worth, apathy, respite

Introduction Meaningful activity is central to well-being in persons with dementia (PWDs). In the context of dementia, an activity is considered meaningful when it enables a person to remain involved in everyday activities and personal relationships.1 Activity participation may be an attempt to counteract dementia symptoms, which create difficulties for PWDs during independent daily living and increases reliance on others. Participating in activity may be more important to the psychological well-being of PWDs then the general physical and social environment.2 Activity theory maintains that older adults who remain engaged in the community have improved psychological and physical well-being compared to those who withdraw. 3 This position is evident in the dementia care field where the idea that activity may be beneficial for PWDs is valued. 4 Although our understanding of the subjective experience of dementia is growing, the role of activity within that experience remains unclear. Dementia decreases well-being of PWDs and their caregivers, whereas activity participation may promote positive outcomes; this makes it important to understand what makes activity meaningful from the perspective of caregivers to foster well-being and improved quality of life (QoL).

Literature Review This research is grounded in a small body of literature that reports on types of activity participation, dementia-related

changes to activity, and what makes activity meaningful from the point of view of combined formal/informal caregivers and PWDs as well as the literature that reports on strategies and adapted programs developed to support caregivers and PWDs to continue leisure activity. What encompasses activity is diverse, consisting of household chores, recreation, work-related endeavors, and social involvement; what makes it meaningful is doing things that matter, the sense of pleasure, connection, and autonomy associated with activity participation, regardless of level of dependency or cognitive impairment.5 In-depth conversational interviews with PWD (mild-moderate) finds that involvement in a variety of household chores, social engagements, and leisure activities fosters pleasure, a feeling of belonging in the world, and a sense of self-identity.6 Harmer and Orrell7 provide insight on meaningful activity from the perspectives of both PWDs and caregivers, including staff and family, in a long-term care facility. Those important to PWDs maintain past values, beliefs, and interests, address psychological needs, and are enjoyable, while those staff and family

1

Centre on Aging, University of Victoria, Victoria, British Columbia, Canada Centre on Aging and Department of Sociology, University of Victoria, Victoria, British Columbia, Canada 2

Corresponding Author: Kaitlyn P. Roland, PhD, Centre on Aging, University of Victoria, PO Box 1700 STN SCS, Victoria, British Columbia, Canada, V8W 2Y2. Email: [email protected]

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American Journal of Alzheimer’s Disease & Other Dementias® 30(6)

560 believe meaningful to PWDs are activities that maintain physical abilities. Barriers to activity are identified as accessibility and motivation by residents and insufficient resources by staff and family caregivers.7 Vikstro¨m and colleagues8 report PWD experience decreased everyday activity and obligations, which results in increased responsibility by caregivers. This decline in activity results in a loss of social engagement for both the PWD and the caregiver, changes the PWD–caregiver relationship, and interferes with the caregiver’s ability to engage in activity.8 As such, meaningful activity is important for both PWDs and caregivers; it includes physical, cognitive, social, household, or leisure activity consistent with previous interests that maintain a sense of self-identity and social identity with the aim of deriving joy, purpose, and improved health. Supporting activity participation not only impacts wellbeing in PWDs but also contributes to the maintenance of the quality of the PWD–caregiver relationship and may develop feelings of self-efficacy in caregivers.9 Caregivers are instrumental in supporting activity engagement; reported strategies include structuring activities that reduce the demands, providing guidance (reminders and instructions) to help the PWD find their way through activities and accompanying the PWD as they engage in activity.1 Research suggests there is a broad range of activities considered meaningful to a PWD; however, our search found only one study that provides insight from the perspective of informal caregivers, and those views were combined with staff caregivers. In addition, we could find no study that examines meaningful activity in PWDs from the perspective of informal caregivers in the community. Lack of leisure activity is related to decreased cognitive function, increased behavior problems, social isolation, and poor QoL in PWDs.10 Understanding the caregiver perspective is important as the literature suggests dementia caregivers experience decreased QoL, relational deprivation communication difficulty, and emotional distress as cognitive decline progresses in the person they are caring for.11-14 Activity participation can not only promote the maintenance of activities of daily living (ADLs) ability, fitness, sleep hygiene, social skills, and behavior and lessen depression in PWDs but also decrease caregiver stress, provide respite, and strengthen the bond between PWD and caregiver.9 As such, activity participation can have a positive effect on the PWD and caregiver. The growing burden of dementia care often falls on family caregivers, at the expense of their own well-being. Understanding how meaningful activity may benefit the PWD from a family caregiver perspective has long-term implications for psychosocial outcomes and may result in reductions in patient and caregiver distress. How informal caregivers attribute meaning to activity participation for the PWD outside the home, the types of activity, and a focus on what makes an activity beneficial or not remains an important gap in the current knowledge. Although we could find no research that directly examines the benefits of meaningful activity from the perspective of family caregivers, research indicates leisure activity participation may promote positive events for both the PWD and their caregiver. Studies that aim to understand everyday life situations are

recommended as beneficial to encourage interventions that support both PWDs and caregivers in activity engagement and improve QoL. This study explores the concept of meaningful activity, as defined by informal caregivers of persons living with dementia.

Methods Design and Sample Data come from a larger provincial program of research, the Alzheimer’s Drug Therapy Initiative (ADTI), of which the Caregiver Appraisal Study (CAS) is part. The ADTI aims to fill in the gaps about cholinesterase inhibitors (ChEIs) treatment for dementia, and the goal of the CAS is to understand the caregiver perspective, through face-to-face interviews, about the benefits and limitations of ChEIs. The caregivers were asked about day-to-day functioning and QoL of people taking these medications, in addition to the implications for caregivers themselves. The CAS recruited caregivers of persons diagnosed with dementia who were taking ChEIs covered by the British Columbia Ministry of Health’s Fair PharmaCare program (donepezil, galantamine, and rivastigmine). Caregivers were recruited through referral: self, staff, physician, and PharmaCare. Potential participants were linked to research personnel, informed about the study, and asked whether they would be willing to receive a triage phone call after the care recipient had been on ChEI therapy for 6 months. The inclusion criteria are as follows: caregivers were English speaking, a family member, provided at least 3 hours of care over 3 days/ week, and care recipient (PWD) was taking a ChEI. After 6 months, a total of 1300 caregivers were contacted through triage phone calls to access eligibility. The 6-month time frame coincides with the physician assessment of whether the patient should remain on the medication, switch, or stop use. If interested, arrangements were made for face-to-face interview. After participants were contacted, 1243 agreed to participate; 29 were ineligible (patient died, not diagnosed with dementia, and infrequent contact); and 28 declined (too busy and too sick). Of 1243 participants, 906 (72.9%) caregivers were interviewed between 2008 and 2010; 337 (27.1%) were not interviewed due to PWD death, caregiver at triage was no longer the caregiver at the time of the interview, and so on. All participants volunteered for the study and provided informed consent.

Data Collection The interviews primarily assess the effectiveness of ChEI treatment. A total of 906 individual interviews were conducted and averaged 97.3 minutes in duration. The participants’ answered questions related to support and service use; attitudes toward care; positive/negative aspects of caring, health, perceived impact of medication, leisure activity participation, and meaning; ADL abilities; behavioral issues; and sociodemographic characteristics. This article focuses on understanding leisure activity participation and meaning as assessed through

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Table 1. Participant Characteristics.a Adult child

Spouse

Other

28.7

67.7

3.6

Community

Care

81 AD

19 Unspecified

VaD

LBD

Other/mixed

Diagnosis

59.8 Mild

13.3 Moderate

11.6 Severe

5.4 Unknown

9.9 Normal

Caregiver reported Physician-sMMSEb

35.8 45.7 Yes

25.5 23.7 No

6.3 0.8 Yes, but difficult

32.3 n/a

Activity beneficial?

79.6

9.5

7.8

3.1

Relationship

Living

n/a 24.2 Unsure/no response

Abbreviations: AD, Alzheimer’s disease; VaD, vascular dementia; LBD, lewy body dementia; sMMSE, Standardized Mini-Mental State Examination. a N ¼ 906, %. b Caregivers differ from clinical assessment with none classifying their family member as normal; however, no question was asked to the caregiver whether the family member could be considered as not having dementia.

caregivers’ responses to the open-ended question: What do you believe getting involved in activities outside the home means for someone with dementia?

across stage of disease involves frequency calculations for each theme (cross-tabulation) and comparisons using the Pearson’s chi-square test.

Data Analysis

Results

Data from the question were transcribed into NVivo10 (QRS International Pty Ltd; Melbourne, Australia), a computer-based qualitative data analysis software. Data analysis consisted of coding, the constant comparative method, and memoing. Initially, line-by-line open coding generated potential codes. Next, axial coding and selective coding were conducted, and the constant comparative method of comparing participant data for similar themes was utilized. Furthermore, memos were utilized to facilitate reflexivity. Once a core category was determined, all other categories became subcategories, and then a reflective coding matrix was created to depict the relational hierarchy of subcategories to the core category. Thematic content analysis was completed to understand how caregivers attribute meaning to activity participation outside the home in PWDs. The resulting account is comprised of a description of activities for PWDs, an interpretation of whether or not they were beneficial, and for whom (PWD, caregiver, or both). The themes are analyzed in terms of content, frequency, cooccurrence, and relation to stage of dementia. Percentages represent number of times a theme was coded in the data per the total number of caregiver respondents (N ¼ 906).The highest co-occurring categories for each theme are discussed as well as any additional categories co-occurring together greater than 10 times. The percentages listed represent the number of times the 2 categories co-occur in the same participant per the total number of times the category was coded. Using the caregiver classifications of the PWD as mild, moderate, or severe dementia (n ¼ 613), themes are also examined across dementia severity. The analysis for differences in the meaning of activity

The participants are 906 caregivers (49.7% female, 69 + 0.4 years); the sample characteristics are presented in Table 1. Of all caregivers who considered activity beneficial, 33% (n ¼ 263 of 792) mention specific types of activities the PWD participates in. These activities are ranked according to frequency mentioned and are listed in Table 2. Content analysis reveals 3 overall themes from the data (Table 3). Activities are meaningful if they are beneficial for the PWD through connection to others, stimulation, enjoyment, health, coping or independence, and self-worth; meaningful activities are beneficial for the caregiver by improving sense of self in relationship with the PWD and respite; finally, although activity may (or may not) be beneficial, it could be a negative experience. This highlights the challenge to activity participation with dementia and the difficulty caregivers face enabling the PWD to participate.

Activity as Beneficial for the Person With Dementia Connection. Social connection is considered to be imperative by 19.6% of caregivers. Caregivers describe the importance for the PWD to maintain a sense of connection to family, friends, and community. Of these, 78% mention conversations, card circles, dining with friends, excursions, and shopping. Some caregivers mention activities specific to the PWD’s social lifestyle, such as one PWD who enjoys getting a haircut because of his connection there: ‘‘[Activity is] absolutely necessary [for] exercise and interaction with other people. Hairdresser; goes to do his hair to maintain those relationships with people he

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Table 2. Ranking of Types of Activities Person With Dementia Engages in, as Described by His or Her Caregiver. Rank

Na

%b

1

139

2 3 4 5

Activity

Description

52.9

Social participation

68

25.9

Physical activity

Meals, drives, shopping, group trips, support groups, visits with family and friends, and clubs; rotary, lion’s, kinsmen, legion, elks Walking, exercise class, gym, golf, lawn bowling, swimming, gardening, sailing, badminton and dancing

24 17 15

9.1 6.4 5.7

Adult day programs Cognitive engagement Religion- and/or spiritual-involvement

Leaning, education, brain-stimulating games and puzzles Church attendance, faith-based socials

a

Number of caregivers who stated the person they cared for participated in this type of activity. Percentage of a total of 263 respondents who cited specific activities as beneficial.

b

Table 3. Coding Hierarchy and Ranking of Theme Frequency for Total and Per Disease Stage. Parent Code

Child Code (‘‘Themes’’)

#a

%b

Milda

Moda

Severea

Benefits caregiver

Relationship Respite Connection Stimulation: cognition Stimulation: change of pace Sense of self: internal Sense of self: external Enjoyment Health Independence/Coping Difficult for PWDs PWD uninterested Difficult for caregiver/others No meaning for PWDs

37 23 178 141 85 124 51 95 88 64 87 79 37 35

4.1 2.5 19.6 15.6 9.4 13.7 5.6 10.5 9.7 7.1 9.6 8.7 4.1 3.9

20 10 106 49

8 5 53 80

0 6 8 16

84

41

4

28 29 20 37 4 9 9

26 27 18 17 17 14 8

5 4 6 3 14 1 3

Benefits PWD

Negative experience

Abbreviation: PWD, person with dementia. a Number of times the theme appeared in the data. b Percentages represent number of times a theme was coded in the data divided by the total number of caregiver respondents (N ¼ 906).

knows.’’ The other 13.5% mention adult day programming and 8.5% faith-based groups. One caregiver describes how the PWD enjoys seeing her grandchildren: ‘‘[PWD] loves going to see her grandkids, [it] keeps her alert and present outside of herself and [PWD] loves children.’’ Interaction with people outside the care partnership enables the PWD to relate to others and connect to the outside world; they consider it beneficial for the PWD to have a ‘‘social life’’ outside the caregiving partnership. Thirty-seven of these PWDs have always been social, and caregivers express a wish to encourage that sociability. Stimulation. A total of 24.9% caregivers cite stimulation as a reason why activity participation is meaningful. Meaningful activity was described by 15.5% of caregivers as being stimulating when it is novel or interesting for the PWD. Stimulation reflects cognition, alertness, focus, and concentration; for example, ‘‘gives her brain new activities and ideas to work with’’ and ‘‘when he comes back from his activity group he is more lively and aware.’’ For caregivers, stimulating activity helps the PWD learn new things, maintain cognitive and

emotional health, and stave off boredom. ‘‘Staying busy,’’ ‘‘staying alert,’’ ‘‘keeping mentally active,’’ and ‘‘working the brain’’ are mentioned as positive effects of stimulating activity. Caregivers see apathetic mood as a threat to activity participation and well-being. However, they feel that if the activity was stimulating enough, it keeps the interest of the PWD and they are more likely to continue participating. Stimulating activities are beneficial to mental health, cognitive function, and in keeping the PWD engaged in the world. Stimulation also reflects caregivers desire for the PWD to participate in activities outside at-home routines and considers changes from household routine to be beneficial for the PWD (9.3% of the total); for example ‘‘important he gets out to see something more than these four walls and me.’’ Caregivers highlight fresh air, seeing new things, interactions with others, physical activity, and less screen time. Caregivers also describe how the PWD would ‘‘stare at nothing’’ and that they have a difficult time persuading the PWD to get out of the house. Although the PWD is ‘‘calmer, happier with regular visits and trips outside of the home,’’ he or she ‘‘continue to do nothing, if not forced or encouraged.’’ This emphasizes how the PWD is

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often unwilling to initiate activity, even if they enjoy it, making it difficult for the caregiver. Sense of self. A total of 13.7% discuss how activity participation relates to the internal values of self: 70.1% of these mention self-esteem, while 29.9% stress the importance of a continued sense of self. Caregivers convey activity participation as meaningful because it gives the PWD a sense of self-worth, for example ‘‘[PWD] used to say ‘I’m no good for anything’—now she is making friends, going to bible study . . . builds her selfworth.’’ One caregiver states that ‘‘without activities outside the home, the individual will lose their personhood and disappear.’’ As such, activity participation gives the PWD confidence, something to look forward to, goals, and the opportunity to feel good about self. Caregivers also emphasize that the PWD wants to feel valued by others and it is ‘‘important to be recognized and remembered by people.’’ Activity participation reminds others that the PWD ‘‘is still a person deserving of respect,’’ especially when it reflects the interests and activities that the PWD enjoyed prior to dementia onset. Caregivers encourage the PWD to continue such activities to maintain their lifestyle, saying ‘‘it’s good to keep up activities from the past.’’ Maintaining ‘‘status quo’’ comforts the PWD and ‘‘helps them have a sense of normalcy in their lives in the increasing world of chaos.’’ Continuing past activities also reaffirms a sense of self for the PWD; caregivers describe how continuity of social engagements is important especially for their PWD partners who are extroverted: ‘‘It’s important because [REL] is a social person and wants to carry on as if everything is normal.’’ Caregivers also relate sense of self to the external reality of a shared world, how the individual relates and contributes to the community, and the value of social relevance (5.6%). The world inhabited by the PWD is often seen by the caregiver as being isolated from the ‘‘real world’’ experienced by others. This separation is deemed negative by caregivers, and they consider activities to be beneficial to help the PWD ‘‘outside their own thoughts and involved in the real world outside of them.’’ Activity is meaningful because it is ‘‘important socially, [for] his social worth.’’ Activity brings the PWD, who seems content in their own reality, into the shared world of others, ‘‘ . . . it is very good to keep them mentally aware of what is going on around [them]’’ and ‘‘important they feel they are a part of living.’’ Some caregivers describe the isolated internal world of the PWD as being too small and the external shared-reality as being better for the PWD’s well-being. Others report activity participation ‘‘makes life meaningful.’’ One caregiver states, ‘‘it’s really important to stay a part of society for the memory to still feel that they have some impact and significance in the world.’’ Enjoyment. Activity was described as meaningful by 10.4% of caregivers when the PWD ‘‘gets enjoyment’’ from it and it ‘‘makes him feel good.’’ Participating in outside activity ‘‘gives them something to look forward to and remember if it’s something they really like.’’ Caregivers comment that activity

‘‘enhances their mood, cheers them up’’ and ‘‘keeps them occupied and happy.’’ Activities are especially enjoyable when the PWD is able to get out and interact with others or spend quality time with their care partners doing something they both enjoy. Health. Caregivers consider activity outside the home to be beneficial for the general health of the PWD (9.7%), including exercise, leisure games, and social outings. Activity participation keeps the body strong, maintains memory, and reduces anxiety. Of those who consider the health benefits, 77.2% emphasize physical exercise as imperative for fitness, cognitive function, improved mood, and secondary muscle weakness. Benefits of activity also include ‘‘warming up the [REL] cold hands and feet’’ and improving sleep. One caregiver explains, ‘‘walking is good for brain stimulation,’’ another comments, ‘‘exercise [is] good for her legs and breathing’’ and finally, ‘‘being social is needed for everyone’s health.’’ Seven caregivers describe activity simply as good for their overall health and QoL; ‘‘gives her a higher quality of life—and keeps her healthier longer.’’ Independence and coping. Engaging in activity is meaningful for the PWD when it provides ‘‘a break from being ill’’ (4.8% of total) and gives them a sense of independence and selfreliance (2.2% of total). The PWD develops coping skills in a supportive environment by interacting with others having dementia. Caregivers describe how activities provide an opportunity to practice communication and appropriate behavior, improve physical function, and learn strategies to manage the disease. For example, ‘‘It gets her among people of the same situation, helps her better understand the disease’’ and ‘‘the things that he’s learned to take care of himself are a huge benefit.’’ Of these, 37.5% mention that daycare programs or exercise classes among peers make the PWD feel safe and enable them to participate without being judged: ‘‘it gives him a non-judgmental social outlet. He still tries to do everything right and still does. But going to adult day-care he feels (I think) everybody is the same. He feels needed . . . safe and comfortable.’’ Activity participation also helps gain confidence in skills needed for ADL and ‘‘makes them feel better knowing they can get out and do things. Nothing worse than having to depend on someone for everything.’’ Caregivers feel it is good for the PWD to regain some of what ‘‘the dementia took away.’’ As such, activity is meaningful in that it gives PWD a sense of independence; ‘‘[REL] really benefits from new activities and a greater variety and from being able to do things without CG, but will hover close when returning from adult daycare.’’ However, there is some conflict between wanting the PWD to be independent and worrying about his or her safety. For example, 3 caregivers are concerned by the PWD’s insistence on driving, even in the early stages.

Activity as Beneficial for the Caregiver Sense of self in relationship. As dementia progresses, taking on the role of caregiver can threaten the identity of the relative

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564 (ie, spouse and adult child) and the nature of the prediagnosis relationship. As dementia progresses in a care partnership, the relationship between caregiver and PWD becomes unbalanced, with the PWD becoming more dependent on the caregiver. Caregivers report that engagement in activities together acts as a reminder of long-held relationship roles and improves communication (4.1%). The caregivers benefit and feel like a partner again, rather than ‘‘caretaker’’ or ‘‘care manager.’’ Caregivers describe how participation in activities alongside their partners provides pleasure and feelings of fulfillment. They describe the enjoyment of being together and how togetherness makes any activity meaningful: ‘‘Taking her for a drive is significant; as long as she’s with me, that makes me happy.’’ Respite. The participation of PWD in activities benefits the caregiver by providing respite (2.6%). The full-time nature of caring necessarily alters the lifestyle of the caregiver and can cause the caregiver to feel overwhelmed and burdened. Through PWD’s engagement in activities outside the care partnership, such as day programs or activity/support groups, the caregiver is able to get a break; however, these respite opportunities are not always available for some; ‘‘If medicare had a program to care for [REL] to give caregivers like me a break, that would be helpful. We need more accessible available respite resources.’’ One caregiver describes how attending an adult day program allows the PWD ‘‘to come home happy, [and] de-stresses both PWD and caregiver.’’ The PWD’s participation in activities is also meaningful to the caregiver because it gives them a break from care tasks to engage in activity they enjoy. Such activity is important for maintaining self-identity and allows caregivers to recharge and unwind. One caregiver explains how activities ‘‘give me a break to do personal time—read the paper and have a coffee.’’ Finally, in caring for someone with dementia, life can settle into routines. Activity engagement for the PWD outside daily home routine is beneficial to caregivers because they provide a break from structured schedules. Although routines are good for stability, days without variety can be difficult for caregivers. One caregiver discusses how life was ‘‘very dull’’ when they were only at home completing care tasks; activities are a refreshing change in pace. The data suggest these opportunities for respite and changes in routines improve the pleasure caregivers get from the caregiving role.

Activity as a Negative Experience Difficult for the PWD. Caregivers report engagement in activity is difficult for PWD and may induce anxiety in the PWD, which also leads to distress for the caregiver (9.6%). Caregivers report changes to daily routines might disrupt a PWD’s schedule, creating worry and confusion for the PWD. Novel activities cause anxiety and panic for PWDs. The PWD could also become distressed in social situations due to uncertainty about how to act or ‘‘gets overwhelmed in crowds, . . . gets bewildered at the mall, doesn’t want to be around with lots of

people.’’ The physical and cognitive challenges associated with dementia also cause reluctance to participate in activities. For example, combined hearing loss and dementia makes activities stressful and ‘‘communication with other people isn’t the same as it used to be’’ and ‘‘it is intimidating for [REL] to be with others because he can’t keep up with conversations.’’ Person with dementia also becomes frustrated with the increasing difficulty in completing ordinary activities and the inability to continue hobbies. Outdoor activities also ‘‘contributed to confusion or fatigue. Having to pay extra care to his surroundings. He has more sense of loss or isolation when out in public. He feels lost.’’ Finally, one caregiver describes activities as simply being ‘‘scary’’ for their spouse. Person with dementia uninterested. Caregivers express how activity participation benefits the PWD and wished to get them involved but are met with resistance (8.7%). This refusal seems unrelated to the previous personality or sociability of the individual but due to changes in personality since dementia onset. For example, one caregiver describes her spouse’s refusal to engage in activity as ‘‘odd because he was always personable.’’ Many of the caregivers who describe disinterest also report the PWD refuses to go to activities, only to come back saying that they enjoyed themselves. Although the PWD enjoys activity outside the home, it is continuously difficult to persuade them to participate; ‘‘often she says she doesn’t want to go to day care. But when I pick her up she’s had a good time.’’ Caregivers report feeling distressed when trying to get the PWD to participate; ‘‘I can’t make it happen, I wish I could.’’ Finally, other PWDs are uninterested since they were never sociable, preferring to be at home with the caregiver or another family member/close friend: ‘‘he’s never been a social person . . . He’s kind of a home body.’’ Difficult for caregivers and others. Caregivers describe difficulties related to activity participation for the PWD (4.1%). The most common difficulties include planning, resources, and support: getting the PWD ready to leave the home, persuading the PWD to join/participate, finding an appropriate program, making arrangements for transportation, scheduling, and frequency of rest-stops. Dementia symptoms are also challenging for caregivers, especially incontinence, communication problems, and fatigue. The need for constant supervision is stressful for caregivers who worry about safety of the PWD. Finally, caregivers are distressed by the fear exhibited by the PWD when asked to participate in activities. For example, one caregiver reports activity engagement scares her because her husband becomes frightened and ‘‘hangs on to my shirt-tail.’’ In addition, 7 caregivers report it is difficult for others (ie, friends, family, and community) when the PWD engaged in activity . . . ‘‘one of the seniors’ bus tour groups wouldn’t allow her to attend as she was causing trouble.’’ Two caregivers describe friendships lost due to the PWD’s inability to hold conversations (ie, hearing loss and confusion), while 5 comment it is ‘‘stressful for them as they’re not understood in public. People in shops think she is a bother.’’

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Table 4. Frequency of Categories of Themes That Co-occurred in the Same Respondent.

A. Relationship B. Respite C. Connection D. Enjoyment E. Health F. Independence/coping G. Sense of self H. Stimulation I. Difficult for caregiver/others J. Difficult for PWD K. No meaning for PWD L. PWD uninterested

Aa

B

C

D

E

F

G

H

I

J

K

L

37b 6 5 5 4 2 1 3 0 1 1 4

6 23 6 1 1 3 2 2 0 0 0 0

5 6 178 13 15 10 23 26 2 1 0 2

5 1 13 95 7 6 9 17 3 6 0 2

4 1 15 7 88 2 3 17 0 0 0 1

2 3 10 6 2 64 9 8 1 3 0 1

1 2 23 9 3 9 175 18 0 4 0 2

3 2 26 17 17 8 18 226 3 5 1 2

0 0 2 3 0 1 0 3 37 11 1 5

1 0 1 6 0 3 4 5 11 87 7 7

1 0 0 0 0 0 0 1 1 7 35 8

4 0 2 2 1 1 2 2 5 7 8 79

Abbreviation: PWD, person with dementia. a Letter represents theme of the same corresponding letter in first column. b Number represents the total number of times the 2 themes were coded in the same participant’s answer. The highest co-occurring codes for each theme, as well as any additional themes coded together greater than 10 times are bold and are further discussed.

No meaning for the PWD. Some caregivers discuss how activity outside the home means little or nothing to the PWD (3.9%). Caregivers describe how the PWD is ‘‘not into activities,’’ feel they are not necessary and do not perceive any benefits to the PWD. One caregiver explains her mother ‘‘makes no effort to talk to people and I don’t know how much she comprehends,’’ while another reports her husband ‘‘never really did much outside the home . . . [and] it wouldn’t mean much for him.’’ This suggests activities at-home may be more beneficial to some PWDs. However, caregivers often add that these views are dependent on the individual, their circumstances, and disease progression.

Co-occurrence Co-occurrence describes the themes that appeared most often together in the same respondent (Table 4). In terms of benefits for the PWD, connection occurs most often with stimulation (16%), which suggests that interacting with others is engaging and fosters a sense of alertness in PWDs. Also, sense of self occurs most often with connection (13%) and stimulation (10%) and highlights the importance of the social context and cognitive engagement of activity in retaining a sense of identity and for feelings of self-worth. Connection also occurs with health (17%), enjoyment (14%), and independence (16%), while stimulation occurs with health (19%) and enjoyment (18%). This implies that benefits of activity participation (stimulation, health, enjoyment, and independence) are made meaningful through social connection of the PWD to other PWDs, family, friends, and community as well as provides benefit through cognitive stimulation. The themes relationship and respite occur together (26%) and suggest both represent a benefit of meaningful activity participation to the caregivers. Caregivers discuss how the caregiver relationship benefits from respite; for example ‘‘It is a break for both myself and my husband’’ and ‘‘there is someone different to hear his repetitive

stories and not me hearing the same story over and over . . . It is good for both people.’’ In terms of negative aspects of activity participation, when activity participation is difficult for the PWD, it is also difficult for the caregiver (29%). This reflects the effort and planning required by the caregiver to enable the PWD to engage in activity (‘‘it is so hard to get her ready for an outing’’) or the distress caregivers feel (‘‘it’s nerve-wracking at first’’) as well as the difficulty in navigating the activity for the PWD (‘‘having to pay extra attention to surroundings . . . has more sense of isolation when out in public. Feels lost.’’). When some PWDs are uninterested in activity, caregivers are also more likely to attribute no meaning to activity participation (23%) and consider it difficult (20%): ‘‘I don’t think it’s good for her. She makes no effort to talk to people . . . ’’

Stage of Dementia A similar proportion of caregivers across all dementia stages report activity is beneficial (87% mild, 90% moderate, and 91% severe), not beneficial (10% mild, 8% moderate, and 7% severe), or unknown/unsure (3% mild, 2% moderate, and 2% severe). The focus of the caregivers’ responses, though, differs with stage (Table 3). Compared to moderate (32%) and severe (16%), mild-stage dementia caregivers (52%) discuss more the social benefits of activity participation—being part of the community, connecting to the outside world (ie, ‘‘Keeping in touch with friends. Keeping interested in the world around them’’) and maintaining ‘‘your routine of life,’’ ‘‘a sense of normal’’ and ‘‘things they used to enjoy prior to dementia’’ (P < .05); indeed, the benefits decrease as the dementia progresses. Activity participation validates self-worth and promotes the ability to ‘‘have their own meaningful life and sense of being [their] own person’’ in mild stages of dementia (59%) compared to moderate (37%) and severe (4%; P < .05). Compared to moderate (23%) and severe (20%) dementia, mild-stage caregivers (57%) are also more likely to discuss the significance of activities

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566 for caregivers’ own sense of self and for them as a couple (P < .05). However, references are made to engaging now ‘‘because later he might not be able to.’’ Finally, mild-stage caregivers (51%) discuss that PWDs have ‘‘a fear of being embarrassed as memory loss continues’’ compared to moderate (16%) and severe (33%; P < .05). In moderate-stage dementia, caregivers report that the social benefits of activity participation are more focused on connecting to the dementia community and other PWDs ‘‘who understand the disease’’ than in the earlier stages. Activity is more meaningful in moderate stages (54%) because of the cognitive benefits that address dementia symptoms more than early (35%) or severe (11%; P ¼ .05), for example, keeps the PWD mentally active, ‘‘stimulated the memory into retraining some of it,’’ feels like it slows disease progression, and ‘‘keeps her in her home longer.’’ However, activity participation in moderate stages (62%) requires more effort compared to mild (32%) and severe (6%; P < .05) due to greater communication and mobility impairments; ‘‘he needs someone to guide him in activities.’’ In severe-stage dementia, caregivers discuss how although activity can be stimulating, PWDs are more likely to benefit from activity inside the home (‘‘I don’t think people with dementia enjoy activities outside the home, they don’t seem to be into it’’) and ‘‘feeling part of family gatherings.’’ Persons with dementia in severe stages (60%) are more likely to be apathetic than early dementia (6%) and moderate (34%) dementia, leading to decrease involvement in activity (P < .05). If PWDs are capable of activity, activities that involve a safe ‘‘nonjudgmental social outlet’’ are most meaningful. Meaningful activities ‘‘are beneficial by breaking up monotony,’’ ‘‘improve his mood, [making him] easier to be around,’’ and are ones that ‘‘give caregivers a break, that would be helpful,’’ according to severe-stage dementia caregivers (50%) compared to mild (23%) and moderate (27%; P < .05).

Discussion This exploration of activity participation within the informal dementia caregiver context provides insight into what makes an activity beneficial and for whom. Our study contributes to the growing literature that aims to understand the meaning of activity in dementia. Findings reveal activity participation is beneficial to both caregiver and PWD and however is also associated with difficulty for caregivers and feelings of distress for the PWD. This expands our understanding beyond the existing perspectives of PWDs, formal care aids, and in institutional settings. Connection to others is the most commonly listed reason why an activity is meaningful. Caregivers describe the social interaction associated with activity participation as being beneficial to the cognition (stimulation), health, enjoyment, and independence of PWDs, highlighting the significance of social context and demonstrating how positive social interactions and support from the community and family may diminish some of the negative impacts of dementia. Families play an important role in enabling the PWD to remain socially involved and

continue to interact with friends and in their community.15 Caregivers also suggest that interaction of PWDs with peers who are in a similar situation increases comfort levels and describes how adult day programming helps the PWD overcome apathy, which prevents many PWDs from engaging in activity. Even with progressing memory loss, activities enable the PWD to connect with others, practice communicating effectively, deal with memory loss problems, foster appropriate behavior, improve/maintain functional performance, and learn other strategies that contribute to positive attitudes about the disease management abilities. The co-occurrence of connection and sense of self indicates that social activities helped PWDs maintain a sense of identity including those that encourage independence and fulfillment of established roles in the workplace, the family, and the community. Personhood is often constructed and maintained in the context of a relationship, based on an appropriate balance of dependence, independence, and interdependence—with independence centrally valued. Dementia results in a reduction in the number of social relationships to sustain sense of self. As such, connection to others becomes crucial in maintaining not only individual autonomy but also interdependence and relational autonomy.16 In the last decade, attention has focused on understanding the positive impact of dementia on family members caring for a PWD and the dynamic interrelationship between PWD and caregiver.8,9 Our findings demonstrate that such activity helps maintain a healthy caregiver–PWD relationship, fosters sense of independence in PWD, and gives caregivers a break. The caregivers in this study report activity participation provides respite, which serves to strengthen the caregiver-PWD relationship, potentially decreasing caregiver burden and allows for enrichment of interaction, as the caregiver recharges rather than becoming overwhelmed by their caregiving duties. This can also enhance caregiver self-efficacy and impact the development of meaning in a caregiver’s life.9 Caregivers report that their support is often necessary for the PWD to maintain involvement in meaningful activities and compensate for dementiaassociated declines. Caregivers reduce the demands of the activity so the PWD can experience independence; that is, reminders, instructions, accompaniment, and these accommodations foster conversation, interaction, and increase meaningful activity participation for the PWD and his or her family. Our findings also indicate that activity is meaningful when it is shared between PWDs and caregivers, supporting the argument that it may contribute to higher levels of relationship satisfaction and happiness.17 In these instances, ‘‘ordinary activities’’ become meaningful through togetherness.18 The relationship between PWD and caregiver is a key factor in maintaining a sense of self and personhood; ‘‘it is not really possible to tell the story of dementia alone.’’19 In this study, caregivers consider partnered activity to be meaningful and describe finding pleasure in engagement in activity that the PWD enjoyed premorbidly. Caregivers also express sorrow at the loss of their previous relationship with the PWD and find the most meaning in small conversational moments, which

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recall the former reciprocity of their partnership,20 This is important as Torrington21 reports the most frequently raised barrier to enjoyment of life by both PWDs and caregivers is a sense of social isolation. Escalating cognitive and functional impairments experienced by the PWD restricts engagement in meaningful activities. Caregivers report that the PWD is apathetic and showed little interest in activity engagement, becomes anxious or frustrated, or relies too heavily on caregivers for activity performance (ie, assistance, prompts, and encouragement), both physically and socially. This is reflected in the co-occurrence of the themes difficult for the PWD (ie, anxious and reliance on caregiver) and PWD uninterested (ie, apathetic). Caregivers also report they restrict activity participation and/or take control over tasks out of concern for reduced abilities, including forgetfulness and emotional dysregulation, and for safety reasons; this highlights the co-occurrence of the themes difficult for the caregiver and difficult for the PWD. As such, engaging in activity also occurs in a negative context. In some instances, PWDs avoid negative interactions and chose to no longer participate in activities that were once meaningful; in our data this withdrawal most commonly results from social anxiety (difficult for the PWD) or apathy (PWD uninterested). Anxiety is commonly reported in PWDs, varying from 5% to 21% for diagnosed anxiety disorder and 8% to 71% for presence of anxiety symptoms.22 Loss of skill, coming to terms with the diagnosis, environmental factors, and relationships are all reported as causes of anxiety in PWDs and their caregivers. Anxiety is associated with increased physical dependence, disruptions in PWD–caregiver relationships, limitations in activities, behavioral problems, risk of institutionalization, and health care costs.22 Meaningful activities may be the cause of anxiety and/or the solution. Social anxieties and lack of motivation to engage in activities outside the home can be addressed by promoting social interaction in the home, for example ‘‘He refuses to go out. He likes family contact when they come to his home’’ and ‘‘will pull it together at home to be around family.’’ Meaningful activity, however, varies across dementia stages. Although similar numbers of caregivers report activity as beneficial across each dementia stage, the reasons why activity was beneficial differs. In mild stages, activities focus on remaining a part of the world, supporting self-worth and being significant to the caregiver–PWD relationship. Moderate-stage dementia caregivers report stimulating activities that address dementia symptom progression as meaningful; however, activity became more difficult due to symptom progression. Severestage dementia caregivers’ note decreased involvement in activities outside the home. Participation in activity improves the mood of the PWD and gives the caregiver a break. This study suggests further research is warranted on what ‘‘meaningful activity’’ looks like across dementia stages.

Study Limitations In this study, caregivers of family members with dementia provided interview responses related to the importance and

meaning of activity participation, and whether it is considered beneficial. Given that this question was embedded in the purpose of examining the effectiveness of ChEI therapy, this study cannot claim to have presented a comprehensive picture of all benefits of activity and the meaning attributed to them by caregivers of PWDs. In addition, this study was not able to address the perspectives of the PWD on activity. However, this large sample of family caregivers contributes their unique voices on the meaning of activity for PWDs. Results highlight the need for further targeted research among informal caregivers in the community. Specifically, this study opens the door for future exploration of whether activity participation fluctuates in the context of dementia severity as well as changes to benefits with different types of relationships between caregiver and recipient (eg, spouse vs adult child).

Conclusion To successfully promote activity engagement and establish successful interventions, we need to know how caregivers view engagement in activity, types of activity PWD participates in, and understand what makes activity beneficial or not. The findings of this study have implications for both practice and further research. They highlighted the importance of activity for both caregivers and PWDs as well as the need to support caregivers to enable PWDs to continue to participate in meaningful activity, improving QoL of both. The positive effects of activity related to promoting individual interests and providing targeted support for both PWDs and caregivers. Supporting activity participation may be effective in improving PWD sense of self, daily functioning, and improve the well-being of the caregiver. Acknowledgments The authors would like to thank the participants for their time and acknowledge the assistance of Mary L. Robertson with data analysis.

Authors’ Note All inferences, opinions, and conclusions drawn in this publication are those of the ADTI researchers and do not reflect the opinions or policies of the BC Ministry of Health.

Declaration of Conflicting Interests The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study is funded by the Pharmaceutical Services Division, Ministry of Health, Provincial Government of British Columbia as part of the Alzheimer’s Drug Therapy Initiative (ADTI) for purpose of developing evidence for the use of ChEI treatment in the community. KP Roland is funded by ‘‘Canadian Institutes of Health Research’’ and ‘‘Michael Smith Foundation for Health Research’’ Post-Doctoral awards.

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568 References 1. Phinney A. Family Strategies for Supporting Involvement in Meaningful Activity by Persons With Dementia. J Fam Nurs. 2006;12(1):80-101. 2. Marshall MJ, Hutchinson SA. A critique of research on the use of activities with persons with Alzheimer’s disease: a systematic literature review. J Adv Nurs. 2001;35(4):488-496. 3. Havighurst RJ, Albrecht R. Older people. New York: Longmans Green, 1953. 4. Kane RA. Long-term care and a good quality of life bringing them closer together. Gerontologist. 2001;41(3):293-304. 5. Vernooij-Dassen M. Meaningful activities for people with dementia. Aging Ment Health. 2007;11(4):359-360. 6. Phinney A, Chaudhury H, O’Connor DL. Doing as much as I can do: the meaning of activity for people with dementia. Aging Ment Health. 2007;11(4):384-393. 7. Harmer BJ, Orrell M. What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers. Aging Ment Health. 2008;12(5):548-558. 8. Vikstro¨m S, Josephsson S, Stigsdotter-Neely A, Nyga˚rd L. Engagement in activities Experiences of persons with dementia and their caregiving spouses. Dementia. 2008;7(2): 251-270. 9. Carbonneau H, Caron CD, Desrosiers J. Effects of an adapted leisure education program as a means of support for caregivers of people with dementia. Arch Gerontol Geriatr. 2011;53(1): 31-39. 10. Cruz J, Marques A, Barbosa A, Figueiredo D, Sousa LX. Making sense(s) in dementia: a multisensory and motor-based group activity program. Am J Alzheimers Dis Other Demen. 2013; 28(2):137-146.

11. Austrom MG, Lu Y. Long term caregiving: helping families of persons with mild cognitive impairment cope. Curr Alzheimer Res. 2009;6(4):392-398. 12. Garand L, Dew MA, Urda B, Lingler JH, Dekosky ST, Reynolds CF. Marital quality in the context of mild cognitive impairment. West J Nurs Res. 2007;29(8):976-992. 13. Lu Y, Haase JE, Farran CJ. Perspectives of persons with mild cognitive impairment. Alzheimers Care Q. 2007;8(1):75-86. 14. Lu Y, Haase JE. Content validity and acceptability of the daily enhancement of meaningful activity program intervention for mild cognitive impairment patient-spouse dyads. J Neurosci Nurs. 2011;43(6):317-328. 15. MacRae H. Self and other: the importance of social interaction and social relationships in shaping the experience of early-stage Alzheimer’s disease. J Aging Stud. 2011;25(4):445-456. 16. Hellstro¨m I, Nolan M, Lundh U. ‘We do things together’ A case study of ‘couplehood’ in. Dementia 2005;4(1):7-22. 17. Genoe MR, Dupuis SL. The role of leisure within the dementia context. Dementia. 2014;13(1):33-58. 18. Persson M, Zingmark K. Living with a person with Alzheimer’s disease: experiences related to everyday occupations. Scand J Occup Ther. 2006;13(4):221-228. 19. Phinney A. The person with Alzheimer’s disease. Baltimore, MD: John Hopkins University Press, 2002. 20. Mullin J, Simpson J, Froggatt K. Experiences of spouses of people with dementia in long-term care. Dementia. 2013;12(2):177-191. 21. Torrington J. The design of technology and environments to support enjoyable activity for people with dementia. Alter. 2009;3(2): 123-137. 22. Afifa Qazi AS. User, carer and staff perspectives on anxiety in dementia: a qualitative study. J Affect Disord. 2010;125(1-3): 295-300.

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