Spousal Caregiver Perspectives on a Person-Centered Social Program for Partners With Dementia

Abstract

This qualitative study explored spousal caregiver perspectives on the experience and impact of a person-centered social program for partners with dementia. Interviews with 5 caregivers and the spouses with dementia were conducted 7 to 8 months after the program ended to explore the sustained impact of the program. Interpretative phenomenological analysis was used to support in-depth exploration of interviews. Three themes emerged including benefits of the program for caregivers, initial expectations and later perspectives of caregivers about the program, and conflicting values and perspectives between caregivers and the spouses. These findings suggest participation in a person-centered social program by people with dementia benefits their caregivers, by meeting the caregivers’ desire for their spouses to increase social participation and engagement in meaningful activities. Participation in the program provided a sustained benefit to one couple in particular, by encouraging the caregiver to resume arranging activities the couple once enjoyed but now had difficulty pursuing.

Introduction

Family members are often the primary caregivers for community-dwelling people with dementia, providing emotional and practical support for participation in meaningful daily activities and accessing health care and support services. ¹ The values, beliefs, and coping strategies of caregivers can influence the number and quality of opportunities available to their relatives with dementia for engagement in meaningful activities. For example, some family caregivers value activities they believe will help maintain the current functional abilities of their relatives. ² These caregivers may, however, simply increase opportunities for social contact or involvement in activities without considering the relative’s preference for specific types of social contacts and activities. ^{2 –5} In addition, family caregivers, especially spouses acting as primary caregivers, may increasingly de-emphasize these values and preferences in deference to accomplishing daily activities and meeting increased care needs of the family member with dementia. They also risk underestimating the negative effect on the person with dementia with progressive restriction in self-determination or decision making related to planning of daily activities. ^6,7

Finding meaningful and positive activities for family members with dementia can be challenging for caregivers, despite an acknowledgment of the importance for engagement in meaningful activities. ⁸ Seeking additional supports using community-based support services is an option available to family caregivers to resolve such challenges. ^9,10 Family members of people with dementia, especially when spouses live together, may not seek support services because they believe that caregiving is their role and responsibility and that a relative with dementia will be resistant to the service. ¹¹ Family members of people with dementia may feel guilty for considering use of a nonfamily service, believing that the service will result in negative outcomes for their relatives with dementia, that use of such services represents role failure, or that such services simply exist to provide respite to the caregiver. ^11,12 A more positive attitude toward support service use and increased problem solving or more effective coping by caregivers, on the other hand, may promote using diverse services to meet the increasingly complex and varied needs of the person with dementia and the rest of the family. ¹³ Family caregivers’ attitudes and beliefs toward using a support service can be influential in deciding to adopt that strategy, although a number of other factors may also influence the decision. ^{12 –14}

Available services for activities and social company may, however, not match the interests and preferences of people with dementia, limiting their engagement in meaningful activities or quality of interactions. Limited daytime activities, restricted companionship, and psychological distress are the most common unmet needs reported by community-dwelling people with dementia and by their family caregivers, even through the majority of professional supports these people received were for daytime activities and company. ^15,16 Family caregivers of people with dementia stated the most important quality requirements for activity and social programs include the content and suitability of activities, their relation to preferences and abilities of the person with dementia, and a well-trained staff having an affectionate manner. ¹⁷ A few qualitative studies report benefits of community-based activity programs for people with dementia, but the activities were provided in a group format and chosen entirely by researchers and/or therapists. ^{18 –20} It is therefore hard to know whether the activities provided had meaning for each person with dementia in that group. Moreover, the sustained benefits of such programs have not been explored from the perspective of people with dementia and their primary informal caregivers (e.g., family members), although interviews several months after the program implementation have been suggested as a feasible way to explore this aspect. ¹⁸

Providing personally meaningful activities and positive social interactions is emphasized in person-centered care for the purpose of maintaining personhood, fulfilling psychosocial needs, and promoting psychosocial well-being for people with dementia. ^{21 –24} The person is held central in person-centered care, by recognizing the whole person as having a unique history, interests, preferences, needs, strengths, and abilities. ^22,25,26 Much attention has been directed toward adopting a person-centered approach in long-term care settings or for people with later stages of dementia, ^27,28 with less emphasis in using this approach with community-dwelling people experiencing earlier stages of dementia although these individuals often remain quite capable of self-determination and decision making.

In accord with person-centered care, relationship-centered care is recognized as a more inclusive way to provide dementia care and conduct research, through understanding the person with dementia in the context of important relationships. ^29,30 Recognizing subjective experiences and perspectives of a person with dementia and of those in close relationships (eg, families) is needed to fully understand the experience, as it is shaped by interdependence and reciprocities in relationships and to promote quality of lives. ^{31 –33}

In September 2013, the University of Kansas Medical Center launched the KUMC PAIRS program. The KUMC PAIRS program is modeled after Boston University’s Partnering in Alzheimer’s Instruction Research Study (PAIRS). ³⁴ Both of these PAIRS programs were replicated from the established Buddy Program developed with support from the Northwestern University Cognitive Neurology and Alzheimer’s Disease Center. ³⁵ The KUMC PAIRS program was designed as a service learning program in which first-year medical students were paired to community-dwelling people with dementia based on shared interests and demographic preferences. To date, the original program and replicated programs have focused on student outcomes only. ^34,35 These programs also promote engagement of people with dementia in personally meaningful leisure and social activities beyond their existing social contacts and limited settings such as support group. Such engagement may additionally have positive benefit for family caregivers of people with dementia. This study explored the experience and the impact of a person-centered, social activity program on community-dwelling people with dementia and their family caregivers. This report focuses on the experience of the caregivers, extending an understanding of how programs such as the KUMC PAIRS program are viewed and experienced by family caregivers of people with dementia. New insight regarding sustained benefits of the program were also sought by conducting interviews more than half a year after the program ended, in the daily lives of both people with dementia and their family caregivers.

Methods

This was a qualitative study in which interviews with family caregivers and their relatives with dementia were conducted 7 to 8 months after the end of the KUMC PAIRS program. These interview data were analyzed using interpretative phenomenological analysis (IPA). ³⁶ In IPA, the lived experience of individuals is explored, with a focus on what an experience means for an individual in the unique contexts, and researchers make sense of each individual’s meaning making. This methodology recommends a very small sample size (3-6 people for case comparisons) for an in-depth analysis of single cases, followed by the search for patterns across cases. In IPA, shared themes among cases are identified, and the uniqueness of an individual’s experience within that shared theme is preserved.

Participants

All 13 family caregivers, whose relatives with dementia participated in the KUMC PAIRS program for 8 months (from September 2013 to April 2014), were invited to participate in the present study. These couples were originally recruited from the Heart of America Chapter of the Alzheimer’s Association, which serves 66 counties in Kansas and Missouri. Five family caregivers (all spouses; 3 women and 2 men; pseudonyms used in Table 1) and their spouses with dementia then agreed to participate in the present study once the KUMC PAIRS program ended. All family caregivers were self-described as being non-Hispanic white. Three caregivers were retired, and 2 caregivers were employed. Three caregivers reported averaging more than 40 caregiving hours per week, another as between 21 and 39 hours, and the final caregiver reporting 9 and 20 hours. All the family caregivers were attending monthly support groups (2 evenings a month) at the Alzheimer’s Association, and all the spouses with dementia attended a daytime activity group (twice a week, from 9 am to 3 pm) at the Alzheimer’s Association during the KUMC PAIRS program period.

Table 1.

Descriptions of Caregivers.

Caregiver (Spouse)	Age	Gender	Ethnicity	Marital Status	Education	Current Employment	Caregiving Hours per Week
Maria	89	F	W	Married	College	Not employed	40+
Laura	77	F	W	Married	PhD	Employed part time	21-39
John	79	M	W	Married	BA	Not employed	40+
Judy	80	F	W	Married	BA	Not employed	9-20
Fred	64	M	W	Married	MS	Employed full time	40+

Abbreviations: F, female; M, male; W, non-Hispanic White.

Procedures

The study was conducted with Institutional Review Board approval from the host institution (HSC #00000561). Each caregiver and the spouses with dementia gave informed consent, including consent for audio-recording of interviews. Face-to-face interviews took place in the homes of participants, 7 to 8 months after the KUMC PAIRS program ended. All caregivers and their spouses with dementia completed demographic information forms prior to beginning the interview. All interviews were conducted between mid-December 2014 and mid-January 2015.

Interviews

Interviews with each couple had 2 phases. The first phase involved the person with dementia only, and the second phase involved the caregiver and the person with dementia together. A semi-structured interview guide was developed ³⁶ and used as a flexible general guide during the interview. The second phase of an interview involved general, open questions asking about the caregiver’s perspective of the KUMC PAIRS experience of the spouse with dementia and of the program’s perceived impact on the spouse with dementia and on the caregiver. The interview probed deeply, by encouraging the caregiver’s further explanation or elaboration on the initial statements about the experience and perspective. Minimal open-ended probes were used such as “Can you tell me more about that?”; “What do you mean by that?”; and “How did you feel about that?” The interviews lasted from 55 to 82 minutes (mean: 70 minutes).

Data Analysis

Audio-recordings of interviews were transcribed verbatim and analyzed according to IPA methodology. ³⁶ These steps included reading each interview transcript closely and multiple times; making notes for key points, focusing on content, language use, context, observations during interviews, and initial interpretations; transforming notes into emerging themes while examining emergent themes to search for connections; creating a list of themes for each interview transcript with all relevant quotes; and searching for repeating patterns and newly emerging issues across participants to identify shared themes (similarities) and individual differences within the shared themes.

Several additional strategies ensured trustworthiness of the data analysis. These strategies included using member checking during interviews through the process of reflecting and probing, having the accuracy of transcripts checked by one of two research assistants before data analysis began, documenting the process showing how a participant’s accounts transformed to the themes, and having weekly meeting among researchers to ensure emerging themes were well grounded and represented in the transcripts. The interpretation and derived meaning were constantly checked against the transcript text to strengthen analytical rigor, by verifying the emerging themes remained reflective of the actual data.

Results

Three main themes emerged for family caregivers, including theme 1, benefits of the program on caregivers; theme 2, initial expectations and later perspectives about the program held by the caregivers; and theme 3, conflicting values and perspectives between family caregivers and the spouses.

Theme 1. Benefits of the Program on Caregivers

Caregivers of people with dementia stated they believed they also derived benefit from their spouse’s participation in the KUMC PAIRS program. The nature of that benefit varied depending on the caregivers’ level of involvement in the program. All 5 caregivers reported 1 shared benefit (subtheme 1a). Two of 5 caregivers participated in activities and reported further benefits (subtheme 1b, 1c, and 1d).

Subtheme 1a: Knowing my spouse enjoyed the program was important to me

All 5 caregivers reported enjoyment and satisfaction by noticing their spouses’ enjoyment when participating in the program, regardless of the caregiver’s own level of involvement in the program. Three caregivers (Maria, John, and Judy) did not engage in any of the activities pursued by their spouses with dementia and the student partners. These caregivers recognized their spouses’ enjoyment and elevated spirits when the spouse returned and shared stories about the activities done with the student partner. Expressions by these caregivers include: “I enjoyed knowing that he [Maria’s husband] was in it because he was always enthusiastic about it and told me about things they did. In general, it was a pleasant experience for him” (Maria); “I felt she [John’s wife] was enjoying her experience. It was nice to see the support situation” (John); and “He [Judy’s husband] was happier.… I could enjoy the benefits he got from it” (Judy). The other 2 caregivers (Laura and Fred), who were more involved in the program, also expressed their enjoyment and satisfaction by noticing their spouses’ enjoyment while their spouses were with the student partners: “It gave him [Laura’s husband] some happy times. That was important to me” (Laura); and “There were obvious satisfaction and joy during the meeting” (Fred).

Subtheme 1b: It was a nice, fun opportunity to do something with my friend or by myself

Laura reported one benefit of the program was that it allowed her the freedom to participate in fun activities with a friend or alone while her spouse was occupied with the KUMC PAIRS activity: “It was nice for me to do fun things with my friend. I even had fun going around by myself” (Laura). Laura reported being very aware of the program’s requirement for one-on-one activity between the person with dementia and the student partner. Laura went to the location of the KUMC PAIRS activity together with her husband, but Laura chose to engage in the activity with a friend or by herself, separate from her husband and the student partner. For example, Laura invited a friend to a symphony concert and had lunch with her friend, and they sat separately from Laura’s husband and his student partner at the symphony concert and at the restaurant: “My husband and his student partner sat separately from my friend and me. We also went out to lunch before then. We sat at a separate table. It encouraged me to do things with my friend, which was nice” (Laura). Laura also reported that she enjoyed the freedom of going to interesting places by herself. Visiting places of interest to her allowed Laura time to think about something other than her usual concerns. Laura reported that having personal time to enjoy activities related to her interest in arts and music was particularly good for her, since she had primary responsibility for all daily activities because her husband was not independent.

Laura said: The good thing was going to some places interesting. You don’t just sit and talk. Go some place and they give you something to talk about and think about, like the Nelson Gallery and Zoo. Take you out of your petty concerns. It gave us something to think about other than our usual concerns.

Subtheme 1c: I am trying to be more active in arranging fun activities for us

Although the KUMC PAIRS program ended 7 to 8 months earlier, Laura reported the program had encouraged her to resume arranging activities the couple had once enjoyed but now had more difficulty in pursuing. This behavior change may have arisen because she perceived benefits for her spouse (eg, elevated sprits) and herself (eg, not thinking about usual concerns) during their participation in the KUMC PAIRS program. Laura and her husband had experienced difficulty in maintaining shared leisure activities because of her husband’s frustration with being unable to drive a car safely. Arguments arose related to driving, which removed Laura’s desire to pursue any activities requiring transportation with her husband: “The fighting about the driving really took away my desire to go around places” (Laura). The commitment to be in the KUMC PAIRS program along with her spouse’s elevated spirits encouraged Laura to make the effort to arrange and participate in activities as a couple. Laura reported she was also glad to have the commitment and the pressure to do the KUMC PAIRS activities because she had experienced depression at that time: “ … and also I suffer from depression and I don’t feel like arranging activities much. It’s hard to force myself to arrange things. I was glad to have the pressure to do it because they were very beneficial for both of us (Laura).” Laura reports her husband remains frustrated and upset when she drives and he does not, but she has became more active in arranging activities and more motivated to find new transportation strategies. Laura and her husband now use the local Jewish Family Service for transportation, allowing them to continue going to art and music events and supporting this couple’s shared leisure activities such as attending symphony concerts and art galleries: “I am trying to be more active about engaging in fun things like going to the Nelson (Nelson-Atkins Art Gallery). We [she and her husband] went to the Nelson Gallery just recently. We already have season tickets for several events like the [Kansas City] Symphony” (Laura).

Subtheme 1d. I enjoyed meeting a new, younger person and we had a good time together

Fred reported he derived benefit from the KUMC PAIRS program by participating in all the activities together with his wife and her student partner. He reported he enjoyed meeting a new, younger person because most of the couple’s new and current contacts were older adults who he and his wife had met through their support group meetings at the Alzheimer’s Association. He also reported that socializing with the student partner and the student’s young children was fun because some activities were those the couple used to do with their own children and grandchildren, and these activities reminded him of his own happy memories. The KUMC PAIRS program provided this couple with additional roles, including feeling like parents to and friends with the student partner. The multiple aspects to this relationship were both positive and natural for Fred, with Fred explaining the student partner was about the age of their oldest daughter and that he enjoyed interacting with younger people: “It was a good opportunity to meet someone very different than our normal everyday activities. It gave us, once again, to establish these multiple relationships or multiple level relationships. Having an exposure to younger people is still a good thing” (Fred).

Theme 2: Initial Expectations and Later Perspectives About the KUMC PAIRS Program held by Caregivers

The caregivers of people with dementia reported varied expectations and perspectives on the KUMC PAIRS program that may have depended upon the current social participation of their spouses with dementia and the caregivers’ past life experiences.

Subtheme 2a: Contributing to research and medical students’ learning

Two caregivers (Maria and Fred) decided to participate in the KUMC PAIRS program because they wanted to contribute to research and to the education of medical students. Maria had several family members with dementia in addition to her husband and stated her experiences with family members having dementia contributed to her desire to contribute to dementia research: “ … So, I have some acquaintance with dementia. People with cancer know that there is a lot of research going on and maybe they can escape the ravages of the disease. Alzheimer’s patients don’t have that” (Maria). Similarly, Fred stated he wanted to help research and teaching of medical students who then may be able to treat people with dementia better having benefited from the KUMC PAIRS program experience: “If we help the students understand Alzheimer’s better, so they can treat people better. That’s a good thing. This was much about helping the Alzheimer’s research” (Fred). Both of these caregivers found satisfaction in taking part in the KUMC PAIRS program and felt they were being helpful by contributing to the future of health care. “I think that’s beneficial. I found satisfaction and enjoyment by being able to participate in somehow hopefully help future Alzheimer’s patients. That was good” (Fred).

Both Maria and Fred did not expect direct benefit to themselves from having their spouses participate in the KUMC PAIRS program: “This was much about helping the Alzheimer’s research, more so than something that will be a direct benefit to us” (Fred). This may be because both of their spouses with dementia enjoyed an active lifestyle and engaged actively in social participation. Maria reported her husband was independent in daily activities and had many acquaintances with whom to socialize. Although Fred’s wife was not independent in all daily activities, he and his wife engaged in their shared leisure and social activities when he was not working. Both Maria’s husband and Fred’s wife also had assumed leadership roles in their daytime activity groups at the Alzheimer’s Association, by actively helping their peers who also had dementia. These two caregivers (Maria and Fred) did not feel a specific need of social participation for their spouses with dementia through the KUMC PAIRS program but found emotional satisfaction by witnessing the satisfaction and enjoyment their spouses derived from new opportunities for social participation with student partners in the KUMC PAIRS program (subtheme 1a).

Subtheme 2b: An outlet for my spouse to socialize with somebody other than family

Three caregivers (Laura, Judy, and John) stated they expected the KUMC PAIRS program would provide their spouses with dementia a chance to establish a new enjoyable relationship with someone other than family members. For example, Laura expected her husband would be able to socialize with a person other than herself, and she stated this expectation was met by the KUMC PAIRS program. Laura believed that providing her husband with an opportunity to spend time with a new friend was good because social contact with previous friends had diminished since her husband’s dementia diagnosis: “I think the best part was a long conversation with someone other than me. I mean we are together most of the time and our social life isn’t so great. When you have Alzheimer’s, your friends can lift away” (Laura). This couple had to do things together because Laura’s spouse was not independent in most daily activities. While Laura was an active participant in her own leisure and social activities (eg, playing in a band, attending a book club and bridge group, and volunteering in a mathematics club), her husband was not able to participate socially without Laura’s involvement or help. The opportunity for her husband to interact with another, new person through the KUMC PAIRS program made Laura feel good, and she reported this opportunity “took a load off her mind.” Similarly, Judy wanted her husband to socialize with another person having a mutual interest because the couple had recently moved to the city and her husband did not have friends living nearby. Judy reported her expectation was met because participation in the program enriched the life of her husband by establishing a satisfying new friendship: “I think it enriched his life considerably by having the opportunity to go out with somebody who isn’t a family member [emphasizing]. And he considers his pair as a friend. That way enriched his life” (Judy). John also regarded the KUMC PAIRS program as another very supportive social outlet, in addition to support of their family and the support group meetings at the Alzheimer’s Association: “Very supportive. It was a more social outlet in a sense that shows supporting her, so that was good” (John).

Subtheme 2c: A specialized social program providing intellectual stimulus

Judy expected the KUMC PAIRS program to give Victor, her husband, greater intellectual stimulation. She regarded the KUMC PAIRS program as a specialized social program that would provide intellectual challenges through working with a medical student who “was picked over and very bright.” Her experience in teaching medical students in a laboratory and Victor’s past profession as a professor at a medical school might have influenced her belief that medical students would provide more intellectual stimulus than would age peers having dementia. Victor’s perspective was, however, different from Judy’s, with Victor regarding the KUMC PAIRS program as the same type of support available from other meetings at the Alzheimer’s Association.

Judy said: It wasn’t just any social group. It was a specialized friend [emphasizing]…. And so, that kind of stimulus that you get from a really bright person as opposed to just a friend you are chatting with in the same boat. You are making a frowny face. [Looking at her husband] You don’t agree with that?

Theme 3. Conflicting Values and Perspectives Between Family Caregivers and Spouses

Conflicting values and perspectives regarding meaningful activities between caregivers and their spouses with dementia were noted during interviews. Such conflicting values and perspectives will be described with relevance to perspectives on the KUMC PAIRS program because this can help better understand the importance of considering the potential for different perspectives of caregivers and their spouses with dementia, to provide insight for health care professionals and to acknowledge the impact of these differences on families in similar situations.

Subtheme 3a: His cognitive engagement versus my personal time

One couple brought up an issue during the interview, arising due to conflicting values. Maria’s husband with dementia (Paul) had been going to daytime activity group meetings at the Alzheimer’s Association, and Maria reported that he was thinking about dropping out. Maria stated she regarded the daytime activity group as the most useful group in which her husband takes part because that group does things that are stimulating and which keep his mind busy. While Maria values keeping her husband’s mind busy, Paul stated his personal values included more of a focus on enjoying the rest of his life. Paul proposed to do this by spending more time on what he considered to be fun activities until his dementia progressed further. This situation illustrates the complexity of balancing the needs and desires of people having conflicting values and represents both a challenge for the health care professional and an opportunity to provide insightful support.

Participation in the KUMC PAIRS program matched the most important value expressed by Paul (enjoying himself) who found “participation easy” (not challenging physically or mentally) and saying he found “pure joy” because he and the student partner did activities together that had been his lifelong leisure pursuits. Paul said he thought going to the daytime group meetings took up too much of his time, and he did not want to spend the rest of his life becoming depressed by only interacting with people debilitated by advancing dementia. Paul also expressed awareness of his own mortality, stating that he did not think he would live much longer considering he was 89 years old. Paul stated he was using the wife’s value on keeping his mind busy as an excuse for going to art galleries, a favorite activity, by telling his wife going to art galleries would keep his mind busy. Paul also stated that he sometimes pretended to be busy.

Although Maria thought that participation in the KUMC PAIRS program was a rewarding opportunity for her husband to be helpful for the future and to improve his self-esteem, she believed that he would get more from his daytime activity group. Maria stated she believed her husband was wrong in not devoting his time to doing productive activities and that he only wanted to enjoy himself. Maria’s experience of having several other family members with dementia may have supported seeking a means to provide intellectual stimulation for Paul, thinking this would slow progression of his cognitive symptoms. The progression of symptoms may represent a greater fear or concern for Maria because she has experienced dementia with other family members, including her mother, stepfather, brother, and uncle and because she is witnessing similar changes emerge in her husband.

Subtheme 3b: KUMC PAIRS program versus other supports

John is a caregiver who said he viewed the KUMC PAIRS program as providing similar support as did group activity meetings at the Alzheimer’s Association. On the other hand, his wife reported she felt the KUMC PAIRS program was quite different from those group activity meetings because her activities with the student partner closely aligned with her self-identity. Perspectives of another couple (Judy and her husband) reported an opposite perspective from that of John and his wife. In this case, Judy (caregiver) viewed the KUMC PAIRS program as different from other group meetings for people with dementia. Judy stated she regarded the KUMC PAIRS program as providing a social bond based on her husband’s past profession in medicine, while she believed the activity group providing social bonds based on having a diagnosis of dementia. She thought her husband was unique in the KUMC PAIRS program because he had something in common with the medical student in terms of professional focus. Judy’s view, however, conflicted with the view of her husband, Victor. He reported thinking there was no difference between the KUMC PAIRS group and his daytime activity group for people with dementia because he believed all his social partners were interested in dementia.

This set of conflicting views may be explained by Judy’s preference to recognize and support the identity of her husband as a professor in a medical school, speaking frequently about this aspect of his identity and his leisure and social activities before his diagnosis with dementia. By contrast, her husband expressed his self-identity as a person with dementia during the interview more often than his self-identity as a professor. Judy’s husband also frequently spoke about his daily life and activities of his group at the Alzheimer’s Association, dwelling on these topics often than focusing on his past activities or his lifestyle before diagnosis. These conflicting perspectives may also explain why this couple had different views on activities during the KUMC PAIRS program period. Judy reported that having a 2-hour movie and then 2 hours of conversation was a better format for her husband’s social exposure than going to different places like other KUMC PAIRS participants. Judy said she based this upon an interest about medicine he shared with the student partner. Victor, however, said he would have preferred to go to different places in the city rather than going to the movie theater all the time, stating he was new to the city and was interested in exploring the city’s activities and offerings. Judy also expressed satisfaction related to Victor doing activities similar to those he used to do in the past (i.e., discussions, mentoring) in the format of a one-on-one interaction with a medical student. She appeared to want to keep the continuity of her husband’s identity intact as it related to his past profession and to protect Victor’s self-esteem through engagement in activities supporting her perception of his identity. She expressed a particular need to do so by describing experiences where her husband was ignored or not respected by others (eg, at a doctor’s visit).

Discussion

The present study explored spousal caregiver perspectives on the experience and impact of a person-centered social program for partners with dementia. We found participation of spouses with dementia in the KUMC PAIRS program provided benefits to spousal caregivers. Caregivers enjoyed knowing their spouses with dementia had satisfying experiences with the student partners. This positive outcome met the caregivers’ need and desire for supporting social participation and engagement in meaningful activities for their spouses and supports similar outcomes reported by others. ^9,15,20 Caregivers who engaged in activities, either separately from or together with the spouse and the student partner, reported they enjoyed opportunities to engage in activities aligned with the couple’s shared interests and family history, with several participants saying these experiences reminded the couples of happy memories. Reminiscing about the shared life history and engaging in shared activities may promote a shared sense of identity as a couple and offset current concerns or difficult situations. ³⁷ Participation in the KUMC PAIRS program by the spouse also represented a positive social opportunity for caregivers who otherwise may have few social interactions with a younger person or whose own social life may be affected negatively by the spouse’s diagnosis with dementia. Providing caregivers with more frequent and positive social interactions may decrease caregiver burden while increasing the subjective well-being of caregivers. ^38,39

Participation in the KUMC PAIRS program provided substantial benefit for one couple in particular (Laura: the caregiver, and Albert: her husband with dementia), by having a sustained impact on this couple’s daily activities 7 to 8 months after the program ended. Laura perceived benefits during the KUMC PAIRS experience for both her husband and herself. This encouraged her to continue pursuing the leisure activities this couple once enjoyed in the community prior to her husband receiving a diagnosis of dementia. No prior studies of social programs have found sustained benefits that affected the couple’s life even several months after the program ended, although spousal caregivers reported the enjoyment of their partners with dementia during the program participation in some studies. ²⁰ Laura said that both she and her husband had experienced depression and their social life was limited and not ideal. This outcome aligns with the suggestion that participation in leisure-based social activities increases motivation for social activities in the community while decreasing depression and perceived stress of people with dementia. ^18,40 Engaging in leisure activities provides the person with dementia with opportunities for enjoyment, self-expression, satisfaction, and distraction from thinking about dementia and other worries, help maintain positive mood, and reduce loneliness. ^{4,41 –44}

The present study found family caregivers have a strong desire and need for supporting their relatives with dementia to have enjoyable social opportunities with other members of the community, supporting reports by others. ¹⁵ Some caregivers of people with dementia anticipated the KUMC PAIRS program would provide their spouses having dementia with new and positive social interactions with people other than immediate family. This expectation emerges from a loss of meaningful relationships and interactions with others in the community, due, for example, to fear, social discomfort, or a lack of understanding or acceptance of dementia by friends. ^4,45,46 The present study supports the value of providing people with dementia with opportunities to establish new, positive social interactions and demonstrates family caregivers derive enjoyment and satisfaction thorough observing the positive effect of the KUMC PAIRS program on their relatives with dementia. ^9,20 Family caregivers’ subjective burden has been reported to be an independent predictor of nursing home admission of people with dementia. ^47,48 Improved quality of life and enhanced mood of people with dementia may lead to decreased subjective burden of family caregivers. ^49,50 Community-based services providing people with dementia opportunities for social interaction may also reduce caregiver’s subjective burden better than in-home services that often focus only on physical needs. ⁵¹

Conflicting values and perspectives between some caregivers and their spouses with dementia were found. One caregiver valued activities that focused on cognitive stimulation, while her husband preferred pursuing leisure and social activities he enjoyed. Caregivers may pay more attention to the negative impact of dementia on engagement in daily activities, try to increase participation to maintain functional abilities of their relatives with dementia, and focus less on the perceived value of engagement in activities. ^2,5 Some caregivers and their spouses expressed differing views on the value of specific types of social contacts and activities. Having family-oriented time was the most valued social activity for one woman with dementia, but her husband did not identify this as being her preference. Instead, he described the different types of social support his wife received (eg, KUMC PAIRS vs support group) as being equivalent. The most desired social relationship expressed by another participant with dementia was friendship based on experiencing new and interesting places, but his caregiver expected he would value a friendship based on a shared professional interest and conversation taking place in a routine setting. These findings illustrate that preference and value for specific types of social contacts and activities must be sought and considered from the perspective of both the person with dementia and the caregiver, rather than from the perspective of a caregiver alone.

The present study has several strengths and limitations. A joint interviewing of each spousal caregiver and the person with dementia was employed, providing a deeper understanding of the co-constructed experiences in addition to understanding possible conflicting perspectives of the couple. ^2,52,53 The use of IPA as the methodology for this study also allowed us to identify unique experiences of each person in addition to shared themes among participants. This methodology with an in-depth analysis of single cases fit well with the characteristics of the KUMC PAIRS program based on person-centered approach. Interviewing caregivers and the spouses with dementia over half a year after the program ended allowed exploration of sustained benefits of the program. However, interviewing only once several months after the program ended might allow participants to forget some parts of the experience and the program’s immediate benefits. Interviewing twice, near the end of the program and several months after the program ended, may better capture both immediate and sustained benefits of the program’s participation on family caregivers and people with dementia.

Conclusions and Implications

Providing meaningful activities and positive social interaction to people with dementia through activity programs can benefit family caregivers as well as their relatives with dementia. A person-centered social activity program like the one-on-one partnership of the KUMC PAIRS program can be a viable way to maximize enjoyment and satisfaction of people with dementia and of their family caregivers. Such program may fulfill caregivers’ psychosocial needs for support and engagement in meaningful activities and relationship for their relatives with dementia. Further studies of person-centered social activity programs for community-dwelling people with dementia are needed to identity whether such programs can meet psychosocial needs of people with dementia and their family caregivers and what the critical elements of these programs are required to promote the quality of lives.