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.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Side-by-Side on Stage - Music and Drama Form a Bridge between Acting Students and People with Dementia in an Intergenerational Group Work

ABSTRACT

This article presents an intergenerational music and drama therapy groups comprised of twelve people with dementia residing in a nursing home and twelve acting students from the community.

The qualitative research aimed to explore the students’ attitudes towards elderly people, and to understand the role of creative arts therapies in facilitating intergenerational relationships. Qualitative content analysis of students’ weekly reports and questionnaires revealed the gradual process of connection between the students and people with dementia. Engaging in a creative act helped the students to discover the strengths and abilities of people with dementia and to see beyond the disease.     

EDITORIAL

Abstract

Alzheimers Disease is a form of progressive dementia associated with diffuse degeneration of the brain, and has become more common in Hong Kong as the population has aged. Individuals with Alzheimers Disease may experience symptoms such as memory loss, poor judgement, and incontinence. They generally lack selfcare ability and require considerable care as their illness progresses. As the traditional caring function of Chinese families has been eroded, individuals with the disease pose new challenges to their family caregivers. Research using an intensive interview method revealed that family caregivers of people with Alzheimers Disease suffer heavy psychosocial, financial, and physical burdens.     

Rural Arab Families Coping with Caregiving

SUMMARY

This research examines the coping patterns of the rural Arab family in caring for a chronically ill elderly relative. The Arab community in Israel is in transition as a result of modernization with changes occurring in the traditional family structure, family norms and living arrangements. This study was conceptualized within the framework of intergenerational solidarity versus ambivalence and utilized a qualitative approach based on the phenomenological paradigm. Data were collected from 10 family units with a chronically ill homebound elder, by means of in-depth interviews. Four people were selected from each unit including the elder, his/her spouse-the primary caregiver-and two other secondary caregivers, usually sons and daughters-in-law. The data indicate the uniqueness of coping patterns among these caregivers in regard to two main components, which are contradictory to findings in the family caregiving literature: differences in the gender of child caregivers and the family readiness to use assistance from formal support systems.     

Mindfulness theory and professional family caregivers in long-term care facilities

This study utilized Ellen Langer's theory of mindfulness to better understand how individuals who work in nursing homes apply their professional knowledge to their personal lives within the context of nursing home family caregiving. Using a sample of 10 professional and 10 non-professional family caregivers (n = 20), qualitative and quantitative methods were used to compare levels of mindfulness and nursing home knowledge. Qualitative analysis revealed similar responses for both types of caregivers in three out of four attributes of mindfulness. This indicates that being a family caregiver of an institutionalized parent is novel for both professional and non-professional caregivers. Narrative data indicates professionals were more mindful than non-professionals when using their nursing home knowledge to approach staff in a non-confrontational manner. Professionals were also more accepting of care-related problems than non-professionals.     

Factors Associated with Depressive Symptoms Among Latino Family Dementia Caregivers

ABSTRACT

Caregiving to a person affected with an irreversible, late onset dementia can be an arduous challenge. Utilizing Pearlin and colleagues' (1990) and Lawton and colleagues' (1989; 1991) stress process model of caregiving, the factors associated with depressive symptoms among Latino¹ family dementia caregivers were examined. Problematic behavior of the dementia-affected person was found to be the most important factor associated with depressive symptoms, followed by poor self-reported health of the caregiver. Human service providers are advised to include depression screening tools at the time of assessment of Latino caregivers and to offer behavioral management interventions and self-care strategies.     

Caregiver perceptions of empowerment and self-efficacy following youths’ discharge from residential care

ABSTRACT

Residential care is one of the most restrictive out-of-home care settings; however, this is a temporary placement and youth eventually reintegrate into the home and community setting. Reintegration presents many challenges, and aftercare becomes critical for maintaining youth gains and promoting family stability. Aftercare programs and supports should align to individual family needs that entail understanding individual and familial characteristics. Previous studies have explored characteristics related to family functioning, mental health, behavior, and perceptions of need during reintegration; yet little is known regarding how affective characteristics (i.e., self-efficacy, empowerment) factor into reintegration, or the implications this may have for providers. The purpose of this study was to address this gap by exploring empowerment and self-efficacy in caregivers (N = 120) who had a child return home within 1 month of departing residential care. Overall, caregivers reported high levels of empowerment and self-efficacy during the initial transition period. Significant differences for empowerment and self-efficacy were present in characteristics such as race, income, number of children in the home, and free/reduced lunch status.     

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.     

The Impact of the Physical Home Environment for Family Carers of People with Dementia: A Qualitative Study

Background: The majority of people with dementia are cared for by their families at home. This study aimed to elicit family carers' perceptions on home environmental aspects and strategies with the view to identify barriers and facilitators when caring for a person with dementia at home.

Design and methods: Thirteen co-resident family carers were engaged in semi-structured in-depth walking interviews. Interviews were recorded, transcribed and analysed using thematic analysis.

Results: Home environments can pose a number of challenges and opportunities. Aspects of the architectural and interior environment (e.g. size, condition, layout and accessibility, familiarity) are perceived as important (Theme 1) as well as a plethora of environmental strategies that encourage independence and comfort at home (Theme 2). Carers' scepticism, timing, costs, property characteristics and mistrust to services are some barriers to implementing environmental strategies (Theme 3).

Conclusions: Carers improvised solutions via trial and error and need further education on strategies to create an enabling and comfortable home environment.     

A Descriptive Study of Home Modifications for People with Dementia and Barriers to Implementation

This study describes home environmental features, safety issues, and health-related modifications in a community dwelling sample of 82 elderly people with dementia. Main barriers to the accessibility of the homes were steps both inside and outside the home. The majority of the caregivers had made home modifications that pertained mainly to physical limitations. Home modifications to support cognitive deficits were made to a lesser extent. The main barrier to the implementation of home modifications to accommodate the care recipient's memory loss was skepticism about their usefulness. Regarding the removal of physical barriers, financial constraints were most frequently mentioned.     

Age Concerns

Summary

Age Concerns is a proprietary care management firm serving the elderly. Established in 1982, the firm has prospered by employing an integrated model of care whereby the caregivers are employees of Age Concerns. In addition, the firm's ability to keep the elderly at home, out of institutional care, has resonated with consumers. Various features of Age Concernsorganizational format, characteristics of consumers, and economic considerationsare described. In 2001, Age Concerns was acquired by the Senior Care Action Network, a social health maintenance organization. In an increasingly commercial environment in which the elderly are a burgeoning market, Age Concerns may be a prototype of future elder-care service delivery.     

Meeting the needs of adolescents living with HIV through home based care: Lessons learned from Tanzania

PurposeHome based care is central to HIV care and support throughout Africa. Most programs have not addressed the unique needs of adolescents living with HIV, who display lower retention in HIV care and treatment adherence. This study examined the experiences of adolescents living with HIV in Tanzania in order to identify ways to improve home based care to better meet their needs.MethodsWe conducted a qualitative study in Dar es Salaam and Tanga Region consisting of in-depth interviews with 14 adolescents living with HIV, 10 primary caregivers, and 12 providers assigned to their households. Interviews examined adolescents' experiences of growing up with HIV, perceptions of current home based care, and challenges in increasing acceptability of services.ResultsWe found the program did not align well with adolescents' expectations. Adolescents felt home based care to be more relevant to their caregivers and did not form independent relationships with providers. They expressed anxiety that participation might lead to inadvertent disclosure of their status and consequent discrimination. Both adolescents and their caregivers felt disappointment that no material or financial support was available despite widespread poverty, although they appreciated receiving psychosocial support and practical referrals. Providers demonstrated motivation to work with adolescents but acknowledged lacking requisite skills such as ways to communicate with young people and key messages to deliver.ConclusionsDespite challenges, we identified feasible adaptations to make home based care more adolescent-centered. These include actively engaging adolescents in program design, improving provider training in communication with adolescents, and proactively addressing unrealistic expectations. Finally, increasing referral links to a wider range of services could improve program effectiveness by integrating it into a broader development approach.     

Using Family-Oriented Treatment to Improve Placement Outcomes for Children and Youth in Residential Treatment

Abstract

Traditionally, caregivers of children with severe emotional and behavioral disturbances have been excluded from treatment planning, and service providers have often blamed caregivers for children's mental health problems. More recently, an approach to treatment based on Systems of Care has emphasized the importance of including caregivers in every aspect of treatment. This article describes a family-oriented residential treatment program in eastern North Carolina and reports initial results of a pilot study in which caregiver participation is valued and emphasized. Implications for practice, policy, and professional training are discussed.     

Green Care Farms Promote Activity Among Elderly People With Dementia

In the Netherlands, an increasing number of green care farms are providing day care to community-dwelling elderly people with dementia. Currently, it is unknown whether activities, activity participation, and facility use of elderly people with dementia at green care farms differ from those at regular day care facilities. The authors performed group and individual observations at 11 green care farms and 12 regular day care facilities. Activities of elderly people at green care farms were more frequent, occurred outdoors more often, were of a higher physical intensity, and more often were aimed at individuals than activities at regular day care facilities. Therefore, the green care farms’ environment may be more beneficial for elderly people with dementia than the regular day care facility environment.     

A Descriptive Study of Home Modifications for People with Dementia and Barriers to Implementation

This study describes home environmental features, safety issues, and health-related modifications in a community dwelling sample of 82 elderly people with dementia. Main barriers to the accessibility of the homes were steps, both inside and outside the house. The majority of the caregivers had made home modifications, which pertained mainly to physical limitations. Home modifications to support cognitive deficits were made to a lesser extent. The main barrier to the implementation of home modifications to accommodate the care recipient's memory loss was skepticism about their usefulness. Regarding the removal of physical barriers, financial constraints were most frequently mentioned.     

Kitwood's thought and relational social work

Tom Kitwood is a key figure in the development of thought about dementia, but generally no references are made to his work outside of elderly care. This article argues that Kitwood's thought has much to offer to all the professional caregivers, regardless of the users’ category they are caring for, and to the broader field of professional social work. Some key themes from the writings of Kitwood are examined, namely the critique of the ‘standard paradigm’; the conception of malignant social psychology; the respect for otherness in the positive person work; the person with dementia as a resource for reciprocity processes; the new culture of dementia. For each of these issues similarities between Kitwood's approach and relational social work are identified. Relational social work considers the helping process and the well-being development as co-constructions, in which the contributions not only by the helper (or the caregiver, or the social worker), but also by the helpee (or by the care recipient, or by the user) are essential: both at the same time are helped and helpers, and both are empowered by this. This idea—of great value to all social work fields—is remarkably close to the Kitwood's thought about the dementia care.     

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.     

Family Support for the Elderly in Korea

Abstract

This article discusses major issues and concerns regarding family support for parents and elderly people in industrialized and urbanized Korea. It summarizes new trends in family support for elderly members, continuing influences of the traditional value of family support (filial piety), growing needs for public services for elderly people and their families, urgent calls for the state to assume greater responsibilities for providing social security and services for the elderly, needs for cross-cultural studies of family support, and certain cultural similarities and differences to be considered. The article concludes with some suggestions for future research.     

Issues of Elder Care and Elder Abuse in the Indian Context

Summary

With 7% of the population of India being elderly, two-thirds of whom live in villages and nearly a half of them in poor conditions, the care of the elderly is a difficult problem to be tackled. The dwindling of the joint family, the rise of dual-career families, a possible shift in filial piety values, the increasing life expectancy with greater chances of a prolonged old age characterized by poverty, degeneration, more empty-nest years, and dependency, have all added to the seriousness of the problem and made the elderly more susceptible than ever to abusive treatment. This paper examines these issues as well as the issue of elder abuse in light of available data and suggests some strategies to meet the problem. Also discussed are the problems, stresses, and strains of caregivers of the elderly. A greater role is envisaged for Non-Governmental Organizations (NGOs) than the state in the care of the elderly, particularly in providing support services to family caregivers.