Relationship and stage of dementia differences in caregiver perspectives on the meaning of activity

Abstract

Caregivers of persons living with dementia (PWD) taking cholinesterase inhibitors, who care 3 + h over three days/week, were interviewed. This study uses thematic content analysis to compare responses to the open-ended question “What do you believe getting involved in activities outside the home means for someone with dementia?” in spouse (n = 613) and adult–children (n = 260) caregivers, and across mild (n = 314) and moderate–severe stages (n = 280). For adult–children caregivers, activity participation promotes independence in their parents. Spouses describe activity in the context of their relationship with the PWD, and the experience is framed around their continued social roles as a couple. Mild-stage caregivers report the difficulty and negative outcomes (e.g. frustration, stigma) of engaging in activity, while moderate–severe caregivers discuss activity as preserving abilities in PWD and providing connection to cohort. This may indicate areas for improved activity provision and support for spouse (i.e. emotional) and adult–children (i.e. resources) caregivers across dementia stages.

Keywords

independence stigma apathy social role anxiety

Introduction

Of the 35.6 million persons living with dementia (PWD) worldwide, the majority live at home and are cared for by a family member. The gradual decline in function associated with dementia may affect the relationships and roles of the PWD, and close relatives (i.e. spouses, adult–child) may have to take on the role of informal caregiver. Caregiving changes dramatically as the disease progresses; as such, the relationship with the PWD may change over time and result in psychosocial consequences for the caregiver (i.e. isolation, guilt) (Skaalvik, Norberg, Normann, Fjelltun, & Asplund, 2014). Caregivers must learn to cope with increased care demands, as well as support their own emotional health, in the context of new challenges in the social and physical environment. Coping is the ability to assess a change in demand and use resources to manage it (Folkman & Lazarus, 1984). Engaging the PWD in meaningful activity is one strategy to help caregivers cope with the demands that arise from daily living with dementia (Kane, 2001). Such efforts reflect an activity theory perspective in that older adults who engage in the community are believed to have improved psychological and physical well-being compared to those who withdraw (Havighurst & Albrecht, 1953). Given the physical and mental health risks associated with dementia family caregiving and the benefits associated with activity engagement, it is important to examine dementia caregiver perceptions of activity participation, the focus of this paper.

Background

PWD and their family members experience significant challenges managing symptoms, navigating day-to-day life, adjusting to disease progression, and planning for the future (Garand, Dew, Eazor, DeKosky, & Reynolds, 2005; Garand et al., 2007; Lu & Haase, 2009, 2011; Lu, Haase, & Farran, 2007). Participating in activity that is meaningful for the PWD may address some of these challenges by supporting daily living abilities and preserving the autonomy and independence of the PWD (Genoe & Dupuis, 2014; Phinney, Chaudhury, & O’Connor, 2007).

Meaningful activities are stimulating and enjoyable for the PWD, provide an opportunity to up to valued commitments, maintain the continuity of previous and patterns of daily life, and enable the PWD to contribute to society (Genoe & Dupuis, 2014; Lu & Haase, 2011; Öhman, Josephsson, & Nygård, 2008; Phinney, 2006; Snyder, 2001). Activity participation can improve the physical and psychosocial well-being of the PWD, preserve functional performance, and decrease associated healthcare costs; supporting the overall management of dementia symptoms (Jack et al., 2011).

Previous interviews with dementia family caregivers emphasize the benefits of activity to social connectedness, physical health, and mental stimulation for PWD (Roland & Chappell, 2015). However, activity is also viewed as difficult and may hold no meaning for some PWDs. Engaging in meaningful activities is also beneficial to the caregiver themselves by providing respite and strengthening the relationship with the PWD (Roland & Chappell, 2015). Family members provide care in different ways depending on their role in the family; this suggests activity participation may have different implications for caregivers depending on their relationship to the PWD (Phinney, 2006). Spouses and adult–child dementia caregivers experience different care needs, support, competing life responsibilities and threats to their sense of self (Skaalvik et al., 2014); therefore, it is important to distinguish how the meaning of activity differs between spouse and adult–child caregivers. Informal caring may be more expected in co-habiting spouse caregivers, as the nature of marital commitments and incremental increases in disease severity often result in gradual coping, while adult–child caregivers experience greater difficulties in managing the situation as they face greater disruption to their lifestyle, family/work/social responsibilities, role conflicts, and experience more feelings of obligation to care (Conde-Sala, Garre-Olmo, Turró-Garriga, Vilalta-Franch, & López-Pousa, 2010; de Vugt & Verhey, 2013; Reed et al., 2014). Spouses experience greater declines in coupled and professional social activities, leading to feelings of isolation and threats to their sense of self. Spouses are also greatly impacted by the PWD’s loss of ability to perform activities of daily living (ADL) (i.e. household chores, finances) and undertake daily tasks previously performed by their spouse with dementia. Caregiver spouses receive less help with daily tasks than adult–child, which results in increased stress (Skaalvik et al., 2014). The literature suggests spousal caregivers find more meaning in activities that support the couple-relationship (Torrington, 2009), such as reminiscence (Mullin, Simpson, & Froggatt, 2013) and continuation of activities they previously engaged in (Evans & Lee, 2014; Persson & Zingmark, 2006), whereas adult–child caregivers coordinate more professional services and dementia-related care activities (Savundranayagam, 2014).

Not only does the meaning of activity differ among care-relationships, but symptom progression necessitates changes in activity engagement across the disease trajectory (Roland & Chappell, 2015). People with mild-stage dementia often experience difficulties with complex and new skills and tend to withdraw from hobbies due to declining self-control and awareness of conversational difficulties (Potkin, 2002). In moderate stages, PWD begin to lose instrumental activities of daily living (iADL) and self-care abilities, and travel becomes increasingly difficult (Potkin, 2002). Focus groups with staff caregivers from dementia-care homes find that mild- to moderate-stage PWD find meaning in activity that promotes continuity and normalcy (Harmer & Orrell, 2008). Individuals with mild-moderate dementia place greater significance on typical everyday activities that they can relate to and that maintain contribution to society (Kovach & Henschel, 1996; Menne, Kinney, & Morhardt, 2002). In severe-dementia, there is an increased reliance on caregivers (Potkin, 2002). According to staff caregivers, later-stage PWD in dementia-care homes benefit more from sensory motor stimulation, such as simple physical games and dance (Harmer & Orrell, 2008). Chung (2004) reports that residents with severe cognitive impairment are more likely to engage in passive activity (i.e. television) and have fewer social interactions and more negative behaviors. However, Harmer and Orrell (2008) find that even in severe-stage dementia when speech impairments and word-finding difficulties are more evident, the ability to participate in meaningful activity relates more to the personality and sociability of the PWD rather than functional ability(Harmer & Orrell, 2008). This suggests that activity participation remains meaningful as a management strategy, albeit in different ways, as dementia progresses.

This research highlights the differences in activity engagement by care-relationship and dementia severity. Research has yet to explore the perspective of family caregivers on the meaning of activity participation across care-relationship and stage of disease. Exploring perspectives on activity participation separately in spouse compared with adult–child caregivers in persons with mild and moderate–severe dementia will help identify better targeting or tailoring of management strategies to reduce caregiver burden. To address the gaps in existing research on meaningful activity in dementia, this study addresses caregivers’ perspectives on activity participation in PWD. Specifically, we examine the meaning of activity in different caregiver sub-groups according to care-relationship (adult–child, spouse) with the PWD and dementia progression (mild, moderate–severe).

Methods

Design and participants

This article draws upon data collected as part of the provincial research program Alzheimer’s Drug Therapy Initiative—Caregiver Appraisal Study (CAS). The overall aim of the CAS, drawn on here, was to explore informal caregivers’ perspectives on the effectiveness of cholinesterase inhibitor (ChEI) therapy in the PWD they were caring for. Caregivers were recruited through referral (self, BC Ministry of Health, physician, Pharmacare). Inclusion criteria were as follows: English-speaking, family members, provided 3 h or more of care over at least three days per week, and the person they were caring for was on ChEI. Potential participants were offered to be connected to research personnel, or mailed information about the study, and asked whether they would be willing to undertake a triage phone call in six months—representative of the timeframe physicians make decisions around continuing ChEI therapy to assess eligibility. Totally, 1300 caregivers received a recruitment phone call, and 1243 interested caregivers who met all inclusion criteria agreed to a face-to-face interview (see Figure 1). Of those, 906 caregivers were interviewed (2008–2010), and 873 were included in this analysis (70.2% spouses). Caregiver characteristics are provided in Table 1. Interviews evaluated the effectiveness of ChEI therapy, support and service use, attitudes, impact of caring, symptom presentation, caregiver relationship, and disease characteristics. The caregiver-rated dementia severity was used in this analysis (N = 594); caregivers categorized the person they cared for as mild (35.8%), moderate (25.5%), severe (6.3%), or unknown (32.3%). The group of caregivers who did not rate dementia severity were of similar relationship type, age, sex, and proportion of PWD living in care or community to those who did (p > 0.19).

Figure 1.

Participant recruitment.

Table 1.

Participant characteristics.

	Total	Adult–child	Spouse
N (F)	873 (600)	260 (189)	613 (411)
Mean age (SD)	69.2 (11.5)	56.9 (8.3)	74.4 (8.2)
N coded	570	177	393
Caregiver-reported stage N (N coded):
Mild	314 (198)	70	244
Moderate	225 (149)	96	129
Severe	55 (36)	17	38
Unknown	279 (187)	77	202

N: number; F: female; SD: standard deviation.

Analysis

Here, we examine the open-ended question: “What do you believe getting involved in activities outside the home means for someone with dementia?” Previous investigation examined the meaningfulness of activity, as defined by informal caregivers of PWD (Roland & Chappell, 2015). This analysis compares differences in meaning assigned to activity participation between care-relationship (spouse vs. adult–child) and between caregivers at different stages of dementia (mild vs. moderate–severe). The analytical strategies were used within a thematic content analysis to provide an interpretation of the meaning caregivers attribute to activity participation. Thematic analysis was used to search the data to identify content that represented the meaning of activity. The categories that emerged (“themes”) were used to analyze the interview data for relationships between groups (relationship, stage) and the meaning of activity. The answers were transcribed into NVivo 10 (QRS International Pty Ltd., Melbourn AUS), a computer-based qualitative data analysis software. Two members of the research team analyzed the interview data using line-by-line open coding and generated potential codes. The constant comparative method was utilized to compare participants with similar themes. Axial and selective coding was conducted and reflexive memos were utilized. The researchers individually, then collectively, compared the data in search of recurring comments and experiences that were clustered into themes. Demographic data were analyzed using descriptive statistics, and frequencies were used to classify codes into groups according to care-relationship and disease stage. This study reports on how the meaning of activity differs between relationships (i.e. spouse, adult–child) and dementia stage (i.e. mild, moderate–severe). In the dementia literature, mild and moderate are often combined and compared to severe stages of dementia (Harmer & Orrell, 2008; Kovach & Henschel, 1996; Menne et al., 2002). In this study, moderate and severe caregivers discussed similar themes and were grouped together to form a comparable sample size to mild. Themes emerged from a total of 65% of caregiver responses in the thematic analysis; 64% of spouses, 68% adult–children, 63% mild, 66% moderate–severe, and 67% unknown (Table 1). The remaining 303 caregivers did not elaborate on the meaning of activity in their responses; for example, they simply provided a positive or negative response (i.e. yes/no) to whether activity was meaningful and/or listed a type of activity (i.e. walking). Percentages represent number of times a theme was coded in the data per the total number of coded caregiver respondents (N = 570). The analysis for group differences use frequency calculation for each theme (i.e. cross-tabulation), and comparisons are conducted using the Pearson chi-squared test.

Results

In this study, the meaning of activity is categorized as pleasurable, problematic, or mixed in meaning, and eight themes are identified (Table 2). Four themes relate to positive meanings of activity that encompass “pleasurable”: positive, connectivity, preserve function, respite; two themes categorized as “problematic”: negative and stigma; and two themes result in a “mixed” meaning (both positive and negative): difficult, no meaning. In a previous analysis of this data, 14 meanings of activity were determined (Roland & Chappell, 2015). To highlight the differences in the meaning of activity between groups in this paper, the themes that did not differ between groups are collapsed together (Table 3). In addition, benefits to caregivers and PWD are combined. For example, “positive” collapses across the themes stimulation, sense of self, and enjoyment, while “preserve function” represents health and independence/coping. Here, we describe and discuss the combined themes relative to different care-relationships and disease stage.

Table 2.

Frequency of themes across caregiver relationships and caregiver-rated dementia severity.

Themes	N (%^α)	Spouse N (%^β)	Adult–child N (%^β)	Mild N (%^β)	Moderate–severe N (%^β)
Pleasurable meanings
Positive (general)	162 (28)	108 (27)	54 (31)	55 (28)	52 (28)
Connectivity	101 (18)	70 (18)	31 (18)	32 (16)^a	40 (22)
Preserve function	69 (12)	43 (11)^b	26 (15)	17 (9)^a	27 (15)
Respite	47 (8)	31 (8)	16 (9)	21 (11)	17 (9)
Mixed meanings
Difficult	115 (20)	86 (22)^b	29 (16)	45 (23)^a	28 (15)
No meaning	34 (6)	25 (6)	9 (5)	11 (6)	10 (5)
Problematic meanings
Negative (general)	27 (5)	19 (5)	8 (5)	12 (6)	7 (4)
Stigma	15 (3)	11 (3)	4 (2)	5 (3)	4 (2)

N: number; %^α: percentage of total participants coded (N = 570); %^β: percentage of total number of participants coded in this group: spouse: 393, adult–child: 177, mild: 198, moderate–severe: 185; ^asignificantly different from moderate–severe (p < 0.05); ^bsignificantly different from adult–child (p < 0.05).

Table 3.

Original themes on the meaning of activity collapsed into those that differ between groups.

Full coding scheme for meanings of activity^a		Collapsed coding scheme
Category	Theme	Category	Theme
Benefits caregiver	Respite	Pleasurable	Respite
Benefits caregiver	Relationship	Pleasurable	Connectivity
Benefits PWD	Connection	Pleasurable	Connectivity
Benefits PWD	Stimulation: cognition	Pleasurable	Positive
Benefits PWD	Stimulation: change of pace	Pleasurable	Positive
Benefits PWD	Sense of self: internal	Pleasurable	Positive
Benefits PWD	Sense of self: external	Pleasurable	Positive
Benefits PWD	Enjoyment	Pleasurable	Positive
Benefits PWD	Health	Pleasurable	Preserve function
Benefits PWD	Independence/coping	Pleasurable	Preserve function
Negative experience	Difficult for PWD	Problematic	Stigma
Negative experience	PWD uninterested	Problematic	Negative
Negative experience	Difficult for caregiver/others	Mixed	Difficult
Negative experience	No meaning for PWD	Mixed	No meaning

See Roland and Chappell, 2015. PWD: persons with dementia.

Pleasurable

A total of 67% of caregivers note the pleasurable meanings of activity participation. According to 28% of caregivers, activity engagement is generally positive, and the PWD is “happier,” “more alert,” and easier to get along with. Both caregiver and PWD are better able to cope with the demands of the disease when the PWD experiences enjoyment and increased sense of self-esteem from engaging in activity. Caregivers (18%) also describe activity as improving the connectivity and the social role played by themselves and the PWD; such as having a presence in the community and maintaining social connections. Using activity as a way to maintain the roles held by the caregiver, the PWD, and the partnership is a strategy to preserve role-continuity amid the changes of dementia. Caregivers consider engagement in activity to be meaningful in preserving function and slowing the progression of dementia symptoms (12%). PWD are described as more alert and aware after activities. For many caregivers, engaging in activities that provided “stimulation of the mind” is a way of managing the declines in cognition associated with dementia and considered beneficial for the PWD’s overall well-being. Finally, when a PWD engages in activity outside the home, 8% of caregivers discuss how they are able to take respite from care tasks. This change in routine is “getting a break” from the burden of daily care routines. Activity is a meaningful way to obtain respite, avoid social isolation, and pursue individual activities outside of the care-partnership.

Mixed

A total of 26% of caregivers see activity as difficult despite recognizing its benefits. Activity is difficult to initiate or engage in by 20%. These caregivers mention the PWD is “not interested” in activity, saying they “can’t get them to do anything.” The physiological difficulties, such as incontinence or hearing problems, which often accompany dementia diagnoses, also necessitate extra considerations that limit activity engagement. As such, disengagement from activity can be a way for caregivers to preserve their own resources and prevent distressing the PWD. For 6% of caregivers, activity engagement provides no meaning to the PWD. This includes instances where the PWD has an introverted personality, or it is the dementia and not the personality of the PWD that renders activity meaningless. For these caregivers, activity is unimportant because the PWD gains little from it, as one respondent said, “Maybe he looks forward to it but he doesn’t remember what he did there.”

Problematic

A total of 7% of caregivers see activity as problematic and avoid engagement. Five percent of caregivers consider activity participation to be negative, resulting in difficult behavior in the PWD. In these instances, activity outside the home cause frustration, anxiety, and confusion in the PWD, resulting in increased distress and worry for the caregiver. As such, caregivers avoid activities that cause problematic changes in mood and behavior. Stigma dissuades PWDs from engaging in activities and causes worry for 3% of caregivers. Society’s negative judgment of a PWD as a result of dementia-influenced behaviors can be difficult for the caregiver and PWD. In this situation, PWD may be “scared of making mistakes in a public situation so retreats from participating…” due to feelings of embarrassment caused by progressing dementia symptoms. PWD and caregivers manage feelings of embarrassment by avoiding social situations that make them feel uncomfortable.

Themes in relation to care-relationship and stage of dementia

Each of the eight themes related to the meaning of activity was examined to determine whether it was more prevalent in the coded responses by adult–children (n = 177), spouses (n = 393), caregivers of persons with mild (n = 198) or moderate–severe dementia (n = 185). In this study, adult–child caregivers are more likely to care for persons with moderate–severe dementia (42%) than mild (26%); while spouse caregivers are more likely to care for persons with mild dementia (40%) than moderate–severe (27%) (p < 0.05). Looking at the three severity groups individually, the frequency of themes coded in the “severe” group is most similar to “moderate.” For example, 14% of all severe and 15% of all moderate caregiver codes discuss activity as preserving function; whereas 3% of all mild caregiver codes report this. As such, grouping severe and moderate together in our sample is appropriate since these groups highlight similar themes.

Adult–child caregivers are more likely than spouses to discuss the positive meanings of activity, including the theme preserve function. Adult–child caregivers, 41%, are also more likely to consider activity meaningful because it preserved function compared to spouses (p = 0.03): “It’s important. Keep mind more active; slow the progression of disease.” Activities outside the home preserved physical, cognitive, and social skills “and helps them coordinate and use their abilities to do basic daily activities.” As such, adult–children discuss the general positive meanings, including social validation, physical activity, mood, mental stimulation, sense of independence, belonging, and self-worth. For example, “I think it is needed. It gives them a fuller life per day. Spreads their interests around more, gives them a sense of accomplishment” and “It takes them away from loneliness, keeps them physically active, emotionally stimulated, a sense of independence, and keeps him sociable.” These positive perspectives promote the use of activity as a coping strategy; “It’s good for them – keeps mind active and keeps them thinking about different things. [They] interact with people and surroundings better and cope a little better with stuff.”

Spouses are more likely than adult–child caregivers to discuss the problematic or difficult meanings associated with activity. Spouses, 22%, view activities outside the home as difficult (p = 0.02) due to the dependence of the PWD on them: “He doesn’t like to be away from me,” “I have to be with him everywhere we go,” and “can’t get him to get involved. [He] likes to be with me [and it] weighs heavily on me as he’s totally dependent on me.” Preparing for activity outside the home, organizing schedules and resources, and worrying about safety are also distressing for the caregiver: “But it is so hard to get [PWD] ready for an outside outing.” Finally, spouse caregivers see activities outside the home as a source of stress and frustration for the PWD: “It’s hard. He gets mixed up trying to do things – he gets frustrated” and “Leaving comfort of home and company of caregiver can be uncomfortable.” This frustration and difficulty may be associated with feelings of stigma around dementia. Spouse caregivers more commonly mention the PWD feels incapable, self-conscious about symptoms, and wants to avoid embarrassment: “he doesn’t want to go to the seniors centre because he doesn’t want people to see he has a problem.” In these instances, engaging in activity may have no meaning for the PWD: “I really question whether they really enjoy being involved… sometimes outside activities don’t mean anything for the person with dementia.”

Caregivers of persons with mild dementia, more likely spouses, perceive activity more often as problematic and reduce activity participation compared to moderate–severe caregivers. Mild caregivers, 23%, report activity as difficult (p = 0.03). Persons with mild dementia compare activity participation to life before dementia and become frustrated by comparison: “communication with other people isn’t the same as it used to be.” The sense of declining abilities is more obvious in the early stages “He avoids it because he’s always felt capable. He doesn’t feel that anymore so he doesn’t want to be out.” In mild dementia, caregivers are more likely to report negative meanings of activity, such as anxiety and frustration and how activity is “hard to do because too much activity is upsetting for [PWD].”

Caregivers of persons with moderate–severe dementia are more likely to discuss connectivity and preserve function and are more likely to encourage activity participation compared to mild caregivers. Moderate–severe caregivers, 22%, report that activity was pleasurable because it preserves the connectivity of the PWD (p = 0.03). By engaging in activities outside the home, it enables the PWD “to feel more socially involved and connected with others.” This is important for the social value of the PWD: “Helps him feel he is still in touch with the rest of the world. Validating experience – allows him to feel normal and less ill.” In this study, 15% of moderate–severe caregivers report pleasurable meanings of activity because it preserved function in the PWD (p = 0.03). Activity is stimulating, improves mood and thought processes, and “It keeps them alert. You need to be involved or they’ll lose more abilities.”

Discussion and conclusion

Caregiver perceptions likely influence daily decisions made for PWD and appraisal of the meaning of activity may dictate how caregivers promote participation. Thus, understanding caregivers’ perceptions of the meaning of activity makes a contribution to current insights of informal caregivers’ experiences of activity engagement across dementia progression. We examine how the meaning of activity differs by family relationship with the PWD, as well as how activity is supported in early and later stages of dementia. Despite the challenges associated with engagement in persons with cognitive impairments (i.e. functional ability, apathy, safety), the inherent need for activity participation remains. Meaningful participation in activity is relevant to one’s life roles and interests, indicates independence, self-maintenance, the development of satisfying relationships, and development of a positive sense of self (Chung, 2004).

Building on previous work (Roland & Chappell, 2015), this study identifies eight themes on how different caregiver groups perceive the meaning of activity. Activity participation has pleasurable meanings when it preserves sense of self, social role, function in the PWD, and provides respite for caregivers. Even though some caregivers discuss activity participation as difficult, they also discuss the positives that result when the PWD engages in activity. However, when activity participation results in negative changes, such as depressed mood and frustration, and is associated with difficulty, caregivers avoid activity attributing no meaning to it. Caregivers also perceive activity as problematic when they highlight a loss in function and/or the PWD experiences stigma.

The relationship between the PWD and the primary caregiver is a key context for maintaining sense of self and personhood (Hellström, Nolan, & Lundh, 2005). Dementia often results in the reduction of social relationships and sense of self, for example: “It is invaluable, without activities outside the home the individual lose[s] their personhood and disappear.” For adult–children, activity is used to reinforce previous relationships with the PWD and their cohort, and adapt to changing roles as dementia progresses: “they’re going to lose friends at this age due to death and disease so it’s important to get involved in activities outside of home… It’s good for his self-esteem. [It is] Important to be recognized and remembered by people.” The impact of the changing roles and relationships results in the caregiver adjusting to unequal relationships; this is highlighted in adult–children caregivers where the traditional care roles are reversed. As such, activity participation may be a way to promote independence and self-sufficiency again in their parents: “activity preserves social skills, physical skills, mobility [and is] cognitively beneficial.” Adult–child caregivers interviewed here are more likely than spouses to see activity as having positive meanings.

For these spouses, the role of “caregiver” is integrated with that of “spouse” where tasks associated with caring cannot be made without reference to the relationship. As such, they describe activity in the context of their relationship with their spouse (PWD) and the experience is framed around their continued connection, social roles, care responsibility, and loss (Meuser & Marwit, 2001). Spouse caregivers interviewed here are more likely to report increased social anxiety and frustration for the PWD. Activity has more negative meanings for spouse caregivers due to declining function and the associated dependence of the PWD on the caregiver. For example, “[PWD] is already showing a reluctance to participate in activities where his performance may have declined” because “he doesn’t want people to see he has a problem.” Activity is also described as “scary…[PWD]’s embarrassed that she doesn’t do the right things. Afraid of getting lost or getting left behind. She hangs on to my shirt-tail.” Spouses provide care in earlier stages, where care-recipients may be more aware of dementia symptoms; while adult–children provide care in later stages, where participation in activities alleviates reliance on the caregiver and enables personal-time and breaks from care duties. This necessitates differential types of support for spouse (i.e. emotional support) and adult–child (i.e. external help) caregivers who care for persons at different dementia stages (Savundranayagam, 2014).

Stigma associated with dementia is related to “loss of mind” and may discredit the PWDs identity (de Vugt & Verhey, 2013; Moniz-Cook, Manthorpe, Carr, Gibson, & Vernooij-Dassen, 2006). The negative emotions associated with stigma may result in social exclusion of PWD and their caregivers. Caregivers in mild stages in this study comment how interactions with others are no longer the same after the dementia diagnosis and the PWD may sometimes withdraw from social interactions to avoid negative reactions from others: “He’s aware of what he’s got and he doesn’t want to be embarrassed.” Others report that PWD express frustration toward their reduced faculties (i.e. communication, attention), in the context of ability to perform activities: “I think participating in things is important to them, it’s just hard for them to concentrate on things.” This increases the stress associated with activity engagement in mild caregivers. Caregivers of persons with mild dementia in this study report reducing activities that create anxiety, especially in those with early dementia, as a way of coping with diminishing capacities, disinterest, fatigue, and confusion (Afifa Qazi, 2010). Conversely, continued activity participation despite these negative outcomes occurs through structured activities with reduced demands. These strategies mask disability, avoid embarrassment, and improve success.

In moderate–severe stages, caregivers focus on activities that maintain a connection to others and provide simulation with the goals of managing symptoms, reducing social isolation, and maintaining normalcy. Continued activity participation may be an effective coping strategy in later stages, where the combination of support and resources enables the PWD to adapt to challenging environments and social situations (MacRae, 2011). Activities increase satisfaction and preserve functional abilities in moderate–severe PWD (i.e. communication, memory tools), as well as provide respite for the caregiver. At these stages, caregivers indicate mixed feelings of pride at the PWD’s ability to continue to engage in activity with their support and sorrow for the loss of the long-established dynamic and independence. Caregivers also acknowledge the PWD difficulty with communication and how this often draws negative attention in a social situation, further perpetuating the stigma of dementia. Raising public awareness of dementia and fostering positive attitudes may improve quality of life, gradually decrease stigma, and lower barriers for activity participation.

Study limitations

In considering the findings, the study must be viewed in light of its limitations. The data were collected to determine the effectiveness of ChEI; therefore, in completing a large multi-measure questionnaire, some of the richness of the description of the meaning of activity participation may have been lost. A total of 32% of caregivers do not specify dementia severity in the person they were caring for—this resulted in a loss of 279 caregiver perspectives for the analysis of themes across dementia stage. In addition, caregivers were purposefully sampled to meet the criteria of being family members of persons taking ChEI; as such, the sample was non-randomized and may not accurately represent the family caregiver population at large. Finally, the voice of the PWD is missing; as such, further research into potential differences in perspectives of activity and how it is used to manage dementia for caregiver-care recipient dyads may have important theoretical and clinical implications.

Implications and future research

Despite some limitations, this study makes a valuable contribution to the understanding of activity participation in dementia and how different caregiver groups perceive the meaning of activity. Future research in this area needs to consider activity across other caregiver groups (e.g. friends) and across cultures. Further, a representative community sample is needed to verify the relationship and group differences reported in our sample of persons taking ChEI. Caregivers promote activity engagement as a way of managing dementia symptoms, such as improving mood, function, and a break from care duties. Caregivers reduce activity participation when it results in feelings of stigma, anxiety, and frustration. However, caregivers’ perspectives on activity differ depending on their relationship and stage of the disease. The broader applicability of activity engagement for the PWD is toward the family/friends who accompany them. Adult–child caregivers want a break from care duties, while spouses want enable more opportunities to maintain social roles as a couple. This new knowledge may indicate areas for improved activity provision and support specific to care-relationship.

Activities need to be targeted to meet the individual needs of the PWD and reinforce independence and sense of self. Tailoring activity programs through structuring and reducing the demands may empower PWD, compensate for functional limitations, and diminish anxiety and resulting stigma. In addition, caregivers report a need for support in motivating the PWD to engage in activity. As such, the individual perspective of the PWD on activity engagement needs to be further highlighted to understand how to better encourage their participation. This information supports community designs that address the public health component of engaging PWD in community.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported 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. Kaitlyn P Roland’s Post-Doctoral Fellowship is funded by the Canadian Institute for Health Research (Inst. Gender, Work & Health) and the Michael Smith Foundation for Health Research.

Disclaimer

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.

Kaitlyn P Roland, PhD, is a Canadian Institutes of Health Research and Michael Smith Foundation for Health Research Postdoctoral fellow at the Centre on Aging, University of Victoria. Her recent work examines influences on care needs and dementia caregiver outcomes across neurodegenerative disease groups. Overall, her research aims to support independent living, well-being, and reduce distress and healthcare utilization in persons with Parkinson’s disease and dementia and their caregivers.

Neena L Chappell, PhD, FRSC, is a Canada research chair in Social Gerontology and professor of Sociology and Centre on Aging, University of Victoria. She was founding director of the Centre on Aging at the University of Manitoba (1982–1992) and first director of the Centre on Aging at the University of Victoria (1992–2002). Her gerontological research focuses on issues around aging (caregiving, social support, dementia care, health services, healthy aging, Chinese, and China) and health and social policy.

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