Factors affecting user participation for elderly people with dementia living at home: a critical interpretive synthesis of the literature

ABSTRACT

Professional caregivers are expected to facilitate user participation for people with dementia. At the same time, an increasing number of elderly people with dementia are now being cared for at their homes. Research is scarce on user participation for people with dementia, especially for people with dementia who live at home. This article aims to systematically and critically review the factors affecting user participation for elderly people with dementia living at home from the viewpoint of the patients, family caregivers, professional caregivers and researchers. A systematic literature search and critical interpretive synthesis were conducted. The search yielded 1,957 articles. In total, 112 full-text articles were retrieved, of which 27 met the inclusion criteria. Five broad analytical themes were identified during the analysis: individual characteristics, professional caregiver characteristics, decision characteristics, relational characteristics and organisational characteristics. The results show that the value placed on user participation can differ between family caregivers and professional caregivers. People with dementia still experience stigmatisation, preventing user participation, and relations with both family and professional caregivers play a key role in enabling user participation for people with dementia.     

Honouring identity through mealtimes in families living with dementia

This paper reports the findings from the first year of a longitudinal grounded theory study examining the experience and meaning of mealtimes for persons living with dementia and their family partners in care. Dyad and individual active interviews were conducted with 27 families in the early to mid stages of dementia. Mealtimes provided a window for us as researchers into the broader lives of families living with dementia, reflecting the essence of “who they are”. Families experiencing dementia used mealtimes as a way of honouring identity, being connected, and adapting to and accepting an evolving life. This paper focuses on the theme of honouring identity and the role that mealtimes play in that process. Our findings suggest that individual and family identity are honoured through protecting dignity while struggling for autonomy, having meaningful roles, and reaffirming a sense of self in the world. Implications for theory and practice are discussed.     

Understanding Chinese-Canadian pathways to a diagnosis of dementia through a critical-constructionist lens

Efforts to understand pathways to a diagnosis of Alzheimer's Disease and Related Dementias (ADRD) are important in light of the benefits of early diagnosis to both patients and families, but very little is known about the ways in which persons with dementia and their family caregivers experience this pathway from the point of initial symptom recognition by family or friends to formal diagnosis seeking, particularly for immigrant older adults. Our team employed qualitative methods and a critical constructionist and intersectional framework to understand this experience from the perspectives of ten Chinese-Canadian dyads of persons with dementia and their caregivers. Situating the decisions made by these dyads relative to their intersecting identities and the power structures that inhibit them steered us away from essentializing attributions of their experiences to their ‘culture’ or ethnicity. Early signs of dementia were recognized as such in hindsight. There was no evidence of a strong link between culture and symptom appraisal. Knowledge about dementia, which may be influenced by culture, age, income, knowledge of English, and other determinants of health, played a role in symptom appraisal and help seeking. The role of family caregivers in care-seeking was more highly influenced by structural factors than by traditional Chinese cultural norms about family responsibilities and filial piety. Once caregivers realized that the symptoms and behaviors were ‘problematic,’ they quickly sought out additional information, usually from a family physician. At 1.5 years, the time between symptom onset and diagnosis is comparable to or shorter than that reported in research with other cultural groups. Gender-based power imbalance between female family caregivers and male Chinese-Canadian physicians appear to have contributed to delayed investigations and diagnosis. Sensitivity to such imbalances is important when working with older adults and those from more hierarchical cultures. Essentialized portraits of traditional family structures and cultural beliefs may not accurately reflect the variety of lived experiences of the dementia care-seeking by older Chinese immigrants in Canada.     

Disabling Spaces and Spatial Strategies: Feminist Approaches to the Home Environment of Family Caregivers of People with Dementia

ABSTRACT

The home environment becomes very important for family caregivers of people with dementia as a place of safety, retreat and care provision. Using a gender-based perspective, the authors analyzed thirteen interviews with family caregivers to understand how they perceived their home space. The data was analyzed thematically with the help of adjacency diagrams. Our analysis identified three main themes: compact layout, spatial flexibility, and the wider neighborhood. Given the gendered nature of caring, the findings are discussed drawing on the work of feminist architects regarding the home environment. The authors argue that feminist architectural approaches can usefully inform spatial strategies regarding dementia, ageing friendly housing, accessible living and the wellbeing of the caregiver. Different bodies and users’ needs should be at the epicenter of design, as opposed to conventional design and the current practices by developers, which may create a series of disabling spaces.     

“Ours is the Strangest Situation,Ours is Different from Most Peoples”: Spousal Caregiver Perspectives on the Complex Challenges of Dementia Caregiving in Late-Life Marriage

The relationship between the person with dementia with family caregivers is a key factor in maintaining a sense of self and personhood. Spousal caregiving in particular can create a world of shared meaning, and in the context of the presence of cognitive decline in one spouse, couple hood is essential to a full understanding of how spouses live with and respond to the impact of dementia. While much research has focused on the strengths of long-term married couples caring for a spouse with dementia, there is currently little research on how dementia impacts couples in late-life marriage. This qualitative case study focusses on two female caregivers in late-life marriages negotiating the challenges of caregiving for a spouse with dementia. Spouse 1 returned to live with her ex-husband in order to care for him through his dementia journey and they recently remarried. Spouse 2 married a close friend of the family prior to his dementia diagnosis. While participant shared perspectives include: (1) family dynamics, (2) isolation, (3) financial concerns, and (4) acceptance of their role in their spouse’s dementia journey, their long-term outlooks are divergent due to the complexity of their motives for entering in to late-life marriage.     

Caregiver burden, dementia, and elder abuse in South Korea

The purpose of this study is to identify characteristics that would increase the likelihood that a Korean older adult with dementia being cared for by a family caregiver is at risk of being abused. This analysis was based on a sample of 481 primary family caregivers from the data of Comprehensive Study for the Elderly Welfare Policy in Seoul (2003). Multiple regression analysis was used to examine predictors among the demographic characteristics of caregivers and care recipients, the severity of cognitive impairment, functional ability, caregiver burden, and social support for the degree of elder abuse. The degree of elder abuse was significantly associated with caregiver burden, mental impairment, dependency of daily living of care recipient, and use of formal services.     

Family Caregiver Communication in the ICU: Toward a Relational View of Health Literacy

We interviewed 18 family caregivers about their communication experiences in the ICUs at an urban hospital. Analysis of their narratives suggests health literacy is important in family caregiver/healthcare provider communication, especially as complicated illnesses move the caregiver deeper into decision making. Using the domains of Yuen et al.’s conceptual model of caregiver health literacy (2015), we identified three themes within the context of ICU communication: agency, coordinated communication, and caregiver’s evolving role. We saw family caregivers negotiating domains of health literacy as they built upon knowledge of the patient’s needs, their rights as family caregivers, and the hierarchy of the professional staff. We found that these narratives represent co-created, or relational communication, rather than individual health literacy skills. Conceptualized in the transaction of relationship, health literacy is enacted; it is socially constructed and is the scaffolding upon which family caregivers make decisions, care for their loved one, and care for themselves.     

The genetic connections of Alzheimer's disease: An emerging source of caregiver stress

The purpose of this study was to expand and refine current theoretical conceptualization of dementia caregiving by identifying and analyzing new potential sources of stress. A qualitative analysis of unsolicited letters (N=51) written by family caregivers of persons diagnosed with Alzheimer's disease (AD) was conducted. Content analysis of the data confirmed that providing care for persons diagnosed with AD could impart emotional, physiological, and financial stress on caregivers. The data also revealed an emerging source of stress for family caregivers—fears and uncertainties regarding possible genetic connections between family caregivers and relatives suffering from AD. These results strongly suggest that concerns with genetic connections should be included in theoretical models of stress and dementia caregiving. Implications include the need for increased dissemination of information regarding genetic connections and AD, as well as increased support for family members if and when genetic connections are discovered.     

An Exploration of Adjustment Needs and Efforts of Persons with Dementia After Relocation to a Residential Care Facility

This study examined the adjustment needs and efforts of individuals with dementia after relocation to a residential care facility. This was a qualitative prospective study that involved in-depth face-to-face interviews with 16 individuals with dementia and their family caregivers at 2 and 6 months post-relocation. In their efforts to recreate a sense of home, individuals with dementia had to meet three major highly interrelated and overlapping categories of needs to settle in, fit in, and find meaning in this transition. The satisfactory fulfillment of these adjustment needs resulted in a sense of comfort, connection, and continuity associated with feeling at home. Participants’ efforts to place themselves in their new living environments created a simultaneous need to integrate relocation into their overall sense of self. The results support earlier research indicating that place making is a critical process in the overall psychosocial adjustment to old age. The findings inform supportive interventions to assist individuals with dementia to reconstruct home in a residential care environment.     

Dementia at the Intersections: A unique case study exploring social location

Research exploring the experiences of persons living with dementia has been criticized for failing to situate individual experience in a broader socio-cultural context. In particular, little attention has been devoted to examining how social location shapes the subjective experiences and responses of persons with dementia. This paper examines how one woman's position as a younger, aboriginal woman of lower socio-economic status living with a same-sex partner, helped construct her experiences with dementia. Data for this unique case study are based on in-depth personal and family interviews and video-taped participant observation. Three themes dominated her story. First, receiving a diagnosis of dementia triggered this woman's desire to connect with her cultural heritage. Through this claiming of her cultural identity as an aboriginal woman, the dementia was reinterpreted as facilitating a closer connection with her ancestors and this released for her a sense of creativity, productivity and peacefulness. Second, the refusal of this woman to adopt a more conventional interpretation of dementia, compounded by her younger age and atypical presentation, resulted in a tendency by others to discount the impact of the dementia in her life. Finally, the lack of recognition afforded to her female partner increased her partner's isolation and created challenges for their relationship. This paper will focus on embedding this woman's lived experience within a broader socio-cultural context in order to demonstrate how aspects of one's identity and social location interact to construct one's subjective experience.     

Losing Selves: Dementia Care as Disruption and Transformation

Caregiving is a process of transformed identities and reconstructed relations. The disruption of Alzheimer's disease affects both the individual with dementia and the person providing care. One becomes enselfed in dementia, the other transformed into a caregiver. Using data from twenty qualitative interviews with family caregivers, this article traces the transformative process by which the previous relational selves of both participants become casualties of the disease. Findings suggest that the ill person in this dyad is silenced through dementia, leaving the caregiver narratives to become the morality tales of transformation from disorder to order, from havoc to meaningful interaction. By becoming caregivers, family members construct value in their struggles to negotiate the disorder of illness and recreate meaningful and affirming selves and relationships.     

The lived body in dementia

Little is known about how people with dementia live day to day with this illness and the meaning it has for them. To explore this question, three in-depth interviews and participant observation were conducted with nine people experiencing mild to moderate dementia (MMSE 16–23) and their family caregivers. An interpretive phenomenological analysis revealed how dementia symptoms were experienced in and through the lived body: (1) “Being slow” is about the body slowing down as taken-for-granted activities become halting and tentative; (2) “Being lost” is about being unable to find ones way in an unfamiliar world; and (3) “Being a blank” is about being in an empty world wherein meaningful habits and practices fall by the wayside. These findings challenge the problematic mind–body dualism that pervades current understanding of dementia, thus opening the possibility for developing a vocabulary of care that takes more complete account of the lived experience of dementia.     

Beyond Being on Call: Time,Contingency, and Unpredictability Among Family Caregivers for the Elderly

This article explores contingency as a central yet underappreciated feature of care work. It does so by focusing on family elder care and the complex temporal interactions between caregiver, care receiver, and healthcare institutions in the U.S. context. Drawing on in‐depth interviews with 19 family caregivers for an elderly relative, I show that their experience of time is, paradoxically, systematically unpredictable. It is shaped by three dimensions: uncertain futures (not knowing how long, or how much, they will have to care), conflicting rhythms (mediating between the temporalities of institutions and that of the elderly relative), and flooded time (ongoing expectations of interruption). Focusing on caregivers’ experiences of unpredictability highlights their exclusion from broader social temporalities and the obstruction of their possibilities to craft their own futures. I therefore suggest that the experience and management of contingency may constitute its own form of inequality and is a fruitful site for exploring the temporal relations between paid and unpaid labor. Also, sociological theories of time and labor may benefit from foregrounding care work to advance understandings of the complex and hierarchical interactions between multiple temporal orders in post‐Fordist economies.     

Decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia

Purpose: To describe factors influencing decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia. Design and Methods: Individual interviews were used to collect data with 30 Chinese family caregivers of older adults with dementia in Taiwan. Data were analyzed using thematic analysis. Results: Factors influencing caregivers' decisional conflict included the Chinese value of filial piety, limited financial resources and information, placement willingness of the older adult, family disagreement, distrust of nursing home care quality, and limited nursing home availability. Factors influencing caregivers' decisional conflict post placement included disappointment with nursing home care quality and self-blame for the placement decision. Implications: Findings resulting from this study indicate that Chinese family caregivers experience decisional conflict during the nursing home decision making process as well as after the placement decision. It is important to provide appropriate decision support beginning before admission and across the trajectory of the older person's nursing home stay in order to decrease decisional conflict and facilitate a more positive decision making process for caregivers, family members, and older adults with dementia.     

Factors Associated With Caregivers’ Use of Support Services and Caregivers’ Nonuse of Services Sought

Informal caregivers may face barriers accessing services like respite care, training, and support groups. Using multinomial logistic regression, I modeled caregivers’ probability of using all services sought (“all services used”) and nonuse of any services sought (“any unused services”) as a function of caregiver and care-recipient characteristics. Care-recipient health and function, especially dementia and need for medical task assistance, were associated with all services used and any unused services, and any unused services were more likely among adult children caring for their parents, caregivers of Black and Hispanic older adults, caregivers providing intensive care, caregivers living in metropolitan areas, and residents of states that spend more on increasing access to caregiver services under the National Family Caregiver Support Program. Regularly scheduled caregiving was associated with higher likelihood of all services used, but not with any unused services. Steps should be taken to increase access for caregivers who provide intensive care, care to dementia patients, or assistance with medical tasks and for Hispanic families.     

(Not) a Hallmark holiday. Experience of family caregivers of a relative with Alzheimer's disease.

1. The holiday season may be an especially difficult time for families that have a relative with a dementia. 2. The three themes identified in interviews with family caregivers of a relative with Alzheimer's disease concerned becoming aware of the relative's symptoms, trying to have one last normal holiday, and deciding how to handle the holidays when the relative was in an assisted living facility. 3. Health care providers can help families by planning interventions to decrease stress during the holiday season.     

Managing disability and enjoying life: How we reframe dementia through personal narratives

Rhetoric referring to Alzheimer's disease as ‘the never ending funeral’ or ‘a slow unraveling of the self’ implies that diagnosed individuals and their families alike are victims of a dreaded disease. Data gathered from web-based surveys with twenty-seven individuals with dementia demonstrate how some persons living with the condition actively negotiate their everyday lives to counter such pejorative assumptions. Grounded theory methods were used to consolidate textual data into overarching themes. Findings depict persons with dementia who do not experience an inherent ‘loss of self’ but rather consciously strive to incorporate a ‘manageable disability’ into their existing identities. Respondents give numerous examples of how they can and do live with dementia. These data portray an empowered identity that suggests the need for a reframing of dementia to challenge the normative victim-orientation and the social disadvantages of such biomedical reductionism.     

What Does it Mean to Listen to People with Dementia?

A total of 19 people with dementia were interviewed as part of a study into unmet respite care need amongst caregivers and day-care attenders in Sheffield. Some important contextual debates associated with conducting social research with people with dementia are considered. These include informed consent, competency, and how the interests of caregivers and people with dementia are bound together. A form of process consent was used in conducting semi-structured interviews with day-care attenders. Day-care attenders spoke about 'being here' in a number of ways. These include their initial experiences, their sources of satisfaction and their sense of being in families. These substantive findings and the associated methodological insights suggest day-care attenders have important things to say as service-users if appropriate strategies for listening are employed. Service-providers can collaborate imaginatively with day-care attenders to actively explore how care might be shaped by the experiences of persons with dementia.     

Does family reunification from residential care facilities serve children's best interest? A propensity-score matching approach in Ghana

The U.N. Convention on the Rights of the Child declares that children are entitled to grow up in a family environment with love, happiness and understanding. Governments and international child welfare agencies have promoted the reintegration of children currently in residential care facilities with family or other caregivers. We assess whether 157 children who spent time in a Ghanaian residential care facility but who have been reunified with their families scored differently on a battery of standardized child wellbeing measures than 204 children still living in residential care facilities using propensity score matching models. Results suggest that outcomes, including overall hope (as well as hope pathways and hope agency) and access to basic resources as measured on the Child Status Index, differ between children who were and were not reunified. These results underline the importance of supporting children's physical and psychosocial developmental needs. Children who were reunified with family members or other kin may require additional support regarding access to basic resources whereas interventions designed to increase hope in the future may benefit children in residential care. We urge a redoubling of efforts to care for children under carefully designed national schemes providing resources, trained personnel, and sustained case management.