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.     

Elder Sexual Abuse:

Twenty-eight cases of suspected elder abuse were identified and described by elder protective service workers. All the victims were female, and 71% experienced significant limitations in capacity for independent functioning and self-protection. Indicators of sexual abuse included victim self-report and third party observation of assault, physical injury, and psychosocial symptoms. All but one of the suspected offenders were male. Eighty-one percent were caregivers for the women they allegedly assaulted, and 78% were family members, predominantly sons and husbands. Repeated vaginal rape was the most prevalent type of reported assault. Findings of the study are presented, and issues relative to the sexual victimization of elders are discussed.     

Maximizing Content on Elders with Dementia While Teaching Multicultural Diversity

This article focuses on African American, American Indian/Native American, Asian/Pacific Islander American, and Hispanic/Latino American elders and caregivers who are affected by Alzheimer's disease and other types of dementia. Three specific areas are considered for each of these ethno-cultural groups: (a) diverse perceptions of Alzheimer's disease and other types of dementia; (b) barriers to service utilization; and (c) caregiving responsibilities. Finally, suggestions are offered for the use of this information in the classroom, which may better prepare future practitioners for competent practice with minority elders with Alzheimer's disease and other forms of dementia.     

Family caregivers of the elderly: quality of life and coping in Estonia

The purpose of the study was to analyse the assessments of elderly people aged 65 and more about family caregiving as a factor influencing their quality of life and coping. The study is based on the project SUFACARE—‘Supporting family carers and care receivers in Estonia and in Finland’—in the framework of which the Institute of Social Work of Tallinn University carried out postal surveys in 2010. The Estonian survey was conducted in Tallinn and Lääne-Viru County. The total number of respondents was 581 (70% female and 30% male), of whom 98 (n=74 female and n=24 male) were family caregivers. Caregiving has not influenced the physical and mental health of caregivers, the reason being that many people who receive care are not of very ill health or suffer from dementia. People mostly take care of their spouses. Based on the Estonian Family Law Act (RT I 2009, 60, 395), adult descendants are required to provide maintenance if their relatives are not able to care for themselves. Caregivers whose health is below average consider caring to be physically demanding. We cannot speak of the social isolation of respondents who have care duties—they communicate actively and do not feel lonely. Women report caregiving to be physically strenuous more often than men. The mental health of male caregivers is better—fewer male respondents claimed to feel unhappy or depressed compared to female respondents.     

Ethnic Variations in Dementia Caregiving Experiences

Abstract

The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, Euro-American, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences.     

Caregiver role strain of older workers

The purpose of this study was to measure role strain in older adult workers who were also caregivers of frail elders according to Komarovsky's role strain theory, and to determine whether different patterns of role strain exist for male worker-caregivers than females. METHOD: Researchers developed the Job-Caregiver Role Strain Scale Survey, which was adapted from a survey that measured role strain in working parents and spouses. Surveys were distributed to 11 male and 34 female older workers who were also caregivers. RESULTS: A factor analysis was completed, which isolated four factors of role strain. Researchers named the factors time management and arrangements, health and competing role demands, low rewards, and reactions to perceptions. Role strain in older adult worker-caregivers is complex and involves multiple variables. A discriminant function analysis predicted differences in the way older male and female worker-caregivers perceived role strain. Use of role strain theory can assist employers and occupational therapists in developing and maintaining work environments that support not only the older employee's work performance, but participation in the role of elder caregiver as well.     

A mixed methods inquiry of caregivers of U.S. veterans with sustained “invisible” injuries from Iraq/Afghanistan

ABSTRACT

An exploratory study of caregiver burden associated with family caregivers enrolled in the VA Caregiver Support Program who assist veterans with serious invisible injuries sustained post September 11, 2001. A mixed methods analysis was completed with a retroactive chart review of already collected data (172 participants) in addition to a phenomenological query of 16 participants. Results: T-tests resulted in a significantly higher caregiver burden score with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = ?2.36, p = .02. An ANOVA across caregiver role (parent, spouse, significant other and other) and the Zarit Burden Inventory (ZBI) resulted in a significant difference (F [3, 159] = 1.59, p < .01, with spousal caregivers having a significantly higher ZBI score (M = 6.83; SD = 3.10) than parental caregivers (M = 4.46; SD = 2.70). The phenomenological research resulted in 22 major themes (family adjustment, subjective demands, coping techniques, social support, VA/DOD, self-care, intimacy, role strain, financial resources, life course, obligation, rewards, isolation/loss of self, reciprocity, stigma, community resources, spiritual support, tools, hope, uncertainty, guilt, leash syndrome) which supported quantitative findings. Conclusions: Caregivers and their families had a difficult time adjusting post injury. Caregivers relied heavily on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers and caregivers with children in the home had more difficulty adjusting when compared with parental caregivers.     

Acceptance of Global Positioning System (GPS) Technology Among Dementia Clients and Family Caregivers

The purpose of this study was to examine the acceptance of Global Positioning System (GPS) used to help people with dementia, who are at risk for wandering in their communities. We used a mixed methods research approach that included use logs, pre and post paper-based questionnaires, and focus groups. Forty-five client-caregiver pairs (dyads) were included to use one of the GPS devices for an average of 5.8 months over a 1-year period. GPS acceptance was high; dyads were likely to continue using the GPS. According to the participants, the GPS provided caregivers peace of mind and reduced anxiety in dyads when clients got lost.     

F.A.D.E. A.W.A.Y.-The Financial Affairs of Dementing Elders and Who Is the Attorney?

The financial affairs of twenty-five community dwelling elders with dementia who had lost financial competence were studied by a semi-structured interview with the main carer. Many elders had no access to their own money. Inappropriate management was revealed in twenty-four cases although professionals had been consulted previously in most instances. Legal advice was sought in six cases and resulted in four procedures which were rendered invalid by confusion. In six cases pensions were collected by local authority employees without appropriate authority. Most financial institutions when contacted had no written policy for controlling the resources of those who have lost financial competence.     

FEMALE CAREGIVERS’ REFLECTIONS ON ETHICAL DECISION-MAKING: THE INTERSECTION OF DOMESTIC VIOLENCE AND ELDER CARE

As our population ages, increasing numbers of social workers and other therapists will provide counseling to women who are caregivers of frail elders. These female caregivers often face complex ethical dilemmas in caring for a frail elder. Furthermore, these dilemmas are compounded by domestic violence in the caregiver/frail elder relationship initiated before the onset of caregiving. Illustrated with case examples, this article presents an ethical decision-making model based on an empowerment framework for helping practitioners work with caregivers who face difficult dilemmas impacted by domestic violence. Implications for strengthening clinical practice with these caregivers are discussed.     

Self-efficacy and social support for psychological well-being of family caregivers of care recipients with dementia with Lewy bodies,Parkinson’s disease dementia,or Alzheimer’s disease

The study identified factors associated with depressive symptoms in family caregivers of persons with dementia with Lewy bodies, Alzheimer’s disease, or Parkinson’s disease dementia. An Internet-based survey generated 606 response sets. Regression analysis indicated that care recipients’ memory and behavioral problems, caregivers’ self-efficacy, grief, and tangible, emotional, and affectionate support were significantly associated with caregivers’ depressive symptoms. Self-efficacy mediated caregiver burden to improve psychological well-being. Social support mediated the association between caregiver grief and psychological well-being. Social workers can provide psychoeducational interventions to help caregivers to manage emotional distress and improve capacity to manage tasks related to the dementia.     

Intensity of Case Management Services

ABSTRACT

In a systematic sample of Florida-licensed clinical social workers (N = 273), this study investigated the correlates of perceived adequacy to work with elders with Alzheimer's disease and other types of dementia. Five predictor variables were identified from a standard regression analysis that account for 35.7% of the model's adjusted variance: (a) employment with elders (Beta = .225, p = .000), (b) years of experience (Beta = -.125, p = .018), (c) attitude toward working with elders with Alzheimer's disease (Beta = .351, p = .000), (d) perceived sufficiency of professional education to work with elders with Alzheimer's disease (Beta = .178, p = .002), and (e) attitude toward the delivery of nonclinical services to elders with Alzheimer's disease (Beta = .192, p = .000). Overall, respondents perceived their abilities to work with elders as slightly less than adequate. Implications are discussed.     

Injustice in family care of the Chinese elderly in Hong Kong

With increasing longevity, family care of the Chinese elderly in Hong Kong is evolving as a "caring trap" for female caregivers, especially unmarried daughters. Despite this, as Hong Kong is still a patriarchal Chinese society, most of the major decisions affecting the destiny of frail elders are made by sons or other male members of the family. The unequal gender roles, obligations, and division of caregiving responsibilities within the Chinese family and their effects on the caring relationship are discussed. Implications of this injustice based on gender regarding family care of the elderly and the possibility of its elimination are examined.     

Injustice in Family Care of the Chinese Elderly in Hong Kong

With increasing longevity, family care of the Chinese elderly in Hong Kong is evolving as a "caring trap" for female caregivers, especially unmarried daughters. Despite this, as Hong Kong is still a patriarchal Chinese society, most of the major decisions affecting the destiny of frail elders are made by sons or other male members of the family. The unequal gender roles, obligations, and division of caregiving responsibilities within the Chinese family and their effects on the caring relationship are discussed. Implications of this injustice based on gender regarding family care of the elderly and the possibility of its elimination are examined.     

“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.     

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.     

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.     

Chapter 7. The Hidden Population

SUMMARY

The purposes of this chapter are to discuss the economic status of the rural elderly females in Korea and to examine factors related to poverty. It suggests that Korean rural female elderly, often windows, are faced with serious financial problems. Poverty is associated with age, educational attainment, marital status and living arrangement, and health. When these factors are considered together, it is apparent that rural female elders are facing more severe financial problems than urban female elderly and rural male elderly.     

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.