“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.     

Dementia Patients’ Transition to Residential Aged Care: Carers’ and Social Workers’ Experiences

Many people with dementia eventually require residential aged care, frequently preceded by a hospital admission. Family carers often find the process challenging and disempowering, as they are expected to move their family member to residential aged care quickly. This article reports on findings from a small Australian qualitative study focusing on the provision of information, support and resources, and discusses the findings in relation to person-centred care and critical social work. Social workers completed an online survey and participated in focus groups, and carers were interviewed. The research found that carers valued the information, support, and resources provided by social workers and other hospital staff. They needed time to adjust to the dementia diagnosis and wanted a supportive person to talk to about the written information. The social workers wanted an improved approach to the preparation and communication of information, and a more consistent approach to family meetings.     

Living with dementia in rural and remote Scotland: Diverse experiences of people with dementia and their carers

There is a lack of research into people's experiences of using services as dementia sufferers themselves, or because they care for someone with dementia, in rural areas. This article explores their experiences in the context of rural Scotland, drawing on data gathered from both people with dementia and their carers. Our research suggests that understanding the nuanced and co-constituted experience of dementia in rural communities is a pre-requisite for improving service provision. The paper explores the way in which participants linked their experiences to their spatial location in rural areas. Our findings suggest that participants used a narrative of idealised rurality which linked together interwoven and overlapping social networks, a physical relationship with place and a sense of self sufficiency. However, the participants’ stories also highlighted the diversity in experiences as service users between places, suggesting a disjunction between the generalising narrative of the rural idyll and their particular situations. These findings extend the literature on rural mental health issues and on the experience of dementia in particular, in turn helping to inform place and person centred policies.     

Being central to decision making means I am still here!: The essence of decision making for people with dementia

The ability to make choices and decisions, and to have those decisions upheld, is central to self-determination. For people living with a diagnosis of dementia, however, it can be difficult to remain involved in decision making. While many studies show that people with mild or moderate dementia have the ability to participate in decision making, there are also indications that the attitudes of those around them, including health professionals and family carers, can sometimes be a barrier, and there is generally little understanding about the nature of decision making for this population. This small pilot study draws on van Manen's approach to phenomenology to explore the essence of decision making for people living with dementia. The findings highlight the importance of remaining central to decision making, and the key role that subtle support from carers plays in enabling this.     

Assessment as the Site of Power: A Bourdieusian Interrogation of Service User and Carer Involvement in the Assessments of Social Work Students

The centrality of service user and carer involvement in social work education in England is now well established, both in policy and practice. However, research evidence suggests their involvement in student assessments is underdeveloped and under researched. This study focused on the positioning of service users and carers in relation to other stakeholders involved in the assessments of social work students in England. Using narrative research methodology, 21 participants, including service users, carers, social work students, social work employers and social work educators, were offered a semi-structured individual interview. Participants’ narratives revealed different power relations among those involved in social work students’ assessments and a lack of confidence among service users and carers in making failed assessment recommendations. The paper concludes by arguing the case for social work educators and service user organisations to provide joint training to support service users and carers in their role as assessors of social work students.     

'They don't quite fit the way we organise our services'—results from a UK field study of marginalised groups and dementia care

The accessibility of dementia services to two groups of marginalised service users (people under 65 years of age and people from minority ethnic groups) was examined as part of a UK field study. In 61 interviews with a purposeful sample of professionals and paid carers in dementia care, the main issue in service access related to the small numbers of potential service users and their geographical dispersal. Other issues reflected those faced by people with dementia in general. At present, it seems as though decisions on care are based mainly on financial considerations and perceptions of the risk and dangerousness posed by people with dementia. These findings are linked to broader debates within the social model of disability about the need to address issues relating to people with learning impairments.     

Foster carer stress and satisfaction: An investigation of organisational,psychological and placement factors

The unique demands of the foster carer role are associated with high levels of self-reported stress among foster carers. The current study examines the amount of carer stress that can be attributed to certain role specific challenges and how stress from these challenges varies between carers and placements. As a secondary aim the study examines carer perceptions on current organisational support and training. Participants were sourced from a national fostering agency with branches in the local area. Carers were eligible to participate in the study if they were caring full time for at least one foster child. Eligible carers completed an identical online or paper survey including measures of general stress and parenting stress as well as study specific measures regarding satisfaction with organisational training and support. Results demonstrated that challenging behaviours are the most stressful unique role demand for foster carers and the largest predictor of carer stress levels. Overwhelmingly carers reported a desire for additional training in order to support them in their role. The results support previous research outlining the difficulties faced by foster carers and the need to improve support and training to ensure good placement outcomes including placement stability and reduced carer attrition.     

Beyond words: Older people with dementia using and interpreting nonverbal behaviour

This article addresses a gap in research on nonverbal communication and dementia. It presents findings from a study that explored ways in which older people with dementia used and interpreted nonverbal behaviour within the context of social interactions. Two researchers, using an ethnographic approach, jointly observed nonverbal communicative behaviours occurring in a day-care centre. The findings show that older people with dementia used nonverbal behaviour in meaningful ways for others to interpret, and as a way of self-communication; and that they actively interpreted others' nonverbal behaviour. In specific situations, these people acted in the context of shared meanings, possessed a ‘self’, and took on the ‘role’ of others. This approach has implications for understanding the social experience of dementia and for the ways that care is organised. The role of nonverbal behaviour offers potential for carers to preserve older people's self-identity and improve their quality of life and care.     

Dementia: challenges for social work education in Europe

ABSTRACT

Dementia has been identified as a global challenge across the spectrum of health and social care (World Health Organisation. (2012) Dementia: A public health priority. Geneva: WHO). This paper will explore the implications of this for social work education and the challenges it poses. There is a lack of this focus on social work with older people and people with dementia (pwd) in social work education. Based on calls for an infusion of content on ageing and dementia in social work curricula, paper proposes that we should adopt a person-centred philosophy alongside gerontological social work competencies to achieve this. The specific aim of this paper, therefore, is to explore how we can use these ideas as teaching tools to engage social work students in the discourse on dementia and to develop appropriate skills to work with pwd, their families and carers.     

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

Work,parenting and gender: the care–work negotiations of three couple relationships in the UK

Changes globally mean that there are now record numbers of mothers in paid employment and a reported prevalence of involved fathering. This poses challenges to mothers and fathers as they negotiate care–work practices within their relationships. Focusing on interviews with three heterosexual couples (taken from a wider UK qualitative project on working parents), the paper considers care–work negotiations of three couples, against a backdrop of debates about intensive mothering and involved fathering. It aims to consider different configurations of work and care within three different couple relationships. We found that power within the relationships was negotiated along differential axis of gender and working status (full- or part-time paid work). We present qualitatively rich insights into these negotiations. Framed by a critical discursive psychological approach, we call on other researchers to think critically about dominant discourses and practices of working, caring and parenting, pointedly how couples situated around the world operationalise these discourses in talking about themselves as worker and carers.     

Long-Term Care Crisis in The Netherlands and Migration of Live-in Care Workers: Transnational Trajectories,Coping Strategies and Motivation Mixes

The crisis of the welfare state has generated a powerful pulling effect for contemporary intra-European migration flows. This article focuses on the migration of live-in care workers from Central and East European countries to the Netherlands, following the Dutch care reform. It explores the motivations and strategies of live-in migrant carers (LIMC) engaging in transnational mobility, aiming to understand how their agency is structured in multiple contexts. I am especially interested in transnational coping strategies and in how migrants pursue specific motivation mixes combining need and self-realization. The article draws on in-depth interviews with LIMC workers, triangulated with data from LIMC providers, family carers and other stakeholders. Participants use the LIMC jobs to cope with home and host country constraints, reconcile work and private life, and keep family ties. Continuous mobility is a strategic choice, which makes tough working conditions bearable and enables the achievement of long-term goals.     

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.     

Relationship Quality and Stability in Couples When One Partner Suffers From Borderline Personality Disorder

The main goal of the present study was to examine and compare the psychosocial functioning of 35 couples including a woman diagnosed with borderline personality disorder (BPD) to that of a nonclinical control sample of 35 couples. The BPD status of women from the clinical group and the prevalence of personality disorder in their partner were ascertained through the SCID-II. Participants completed self-report measures of couple functioning. A majority of couples in which the woman suffered from BPD (68.7%) evidenced frequent episodes of breakups and reconciliations and, over an 18-month period, nearly 30% of these couples dissolved their relationship. Nearly half of the men involved in a romantic relationship with a woman suffering from BPD met criteria for one personality disorder or more. As compared with nonclinical couples, clinical couples showed lower marital satisfaction, higher attachment insecurity, more demand/withdraw communication problems, and higher levels of violence.     

An integrated dementia intervention for Korean older adults

Called dotage in Korea, dementia is primarily characterized by cognitive impairments. Secondary manifestations include mental-emotional problems, including depression. This study was designed to examine the effects of an integrated dementia intervention for Korean older adults. The intervention is composed of cognitive stimulation training, exercise, music, art, and horticultural therapy. Participants included 38 older adults with mild dementia. Twenty were assigned to the experimental group and 18 to the control group. Participants in the experimental group attended 18 program sessions. Significant differences were found postintervention between the two groups in measures of cognitive function, depression levels, and mental-emotional health. The findings indicate that this integrated dementia intervention can be applied to help older adults with mild dementia.     

Constructing Couples’ Stories: Narrative Practice Insights from a Dyadic Dementia Intervention

Memory loss and dementia can be devastating for both caregivers and care recipients. Narrative therapeutic approaches offer promise, as well as challenges, for social interventions with couples where one partner has dementia. The Couples Life Story Approach is a recently-developed method by which practitioners work with such couples to help them narrate the story of their life together. This narrative approach is augmented by mementoes (e.g., photos, cards) that are collected by the couple during the intervention. Significant memories are elicited from both partners and developed into a Life Story Book. Drawing on data from this clinical research intervention with 20 older couples, we ask: What are some of the challenges of conducting narrative-based therapeutic interventions with older couples with memory loss? Clinical themes were identified utilizing a multiple case study approach during weekly team meetings. Six of the most prominent themes are presented here. Specifically, how to: (1) construct a narrative from disparate stories, (2) tell a mutual story, (3) tell the story of a couple that has been in a shorter relationship, (4) incorporate others in the story, (5) include difficult life moments, and, (6) end the story. Within each theme, we utilize case examples to illuminate relevant issues and describe strategies that were developed to resolve these clinical challenges. Implications for practitioners and clinical researchers who are engaged in dyadic interventions are discussed.     

Telling it like it was. Audio-taping stories told by mental health service users and carers

This paper begins by claiming that the telling and hearing of stories is intrinsic to the social work task. Examples of the value of hearing stories in a variety of social work roles are provided, as are examples of the theoretical underpinnings which substantiate the importance of enabling service users and carers to tell their stories. The main focus of the paper is on relating how audio-taping the experiences of service users and carers evolved as part of the author's work. With the permission of those interviewed, examples are quoted from accounts of three different family members attempting to deal with a relative's progressive deterioration into severe dementia. These accounts are followed by the memories of a woman who took an overdose and was subsequently ‘ectioned’ under The Mental Health Act 1983. An interview with two parents attempting to respond to the needs of their schizophrenic son is discussed. Some of the unexpected positive repercussions of recording interviews with these service users are described and some cautions are also highlighted. The paper concludes with suggestions of how audio-taping the stories of service users can be used to benefit social workers engaged in various aspects of social work today.     

Supporting families: Outcomes of placement in voluntary out-of-home care for children and young people with disabilities and their families

Parents caring for children and young people with disabilities typically have extensive additional demands on their time and resources. This added pressure can significantly impact well-being and mental health. In extreme circumstances, parents may seek an out-of-home placement for their child. Previous research has looked into factors that influence decisions for families to place their child into out-of-home care but little is known about outcomes for these young people and their families. The Supporting Families study aimed to explore the impact of a voluntary out-of-home placement on young people with disabilities, and consequences for their families. Fourteen parents/carers, twenty six case managers, six accommodation services' managers, and four young people with disabilities participated in face-to-face and telephone interviews and focus groups. Participants reported a range of outcomes for young people in care. Positive outcomes included increased levels of respect for themselves and others, an improvement in independent living skills, and reductions in challenging behaviours. Negative outcomes centred on their experiences of grief, loss and rejection, as well as behavioural problems. Positive and negative outcomes were also found for families. For many parents/carers there was a reduction in perceived stress and caring load, as well as improved mental health and wellbeing for them and the child's siblings. However, parents/carers often experienced ongoing feelings of guilt, grief and loss. The study adds to knowledge about outcomes of being in voluntary out-of-home care for this small but vulnerable group of young people in care and their families.     

Conserving Habitus: Home,Couplehood and Dementia

ABSTRACT

Compared to research on home in circumstances of aging, place and care, our knowledge about home in relation to couplehood is limited despite increases in the percentage of married and cohabiting older people in the UK. Specifically, our understanding of the experience and meaning of home for couples where one partner has dementia remains under-explored. This article presents a scoping review of published empirical literature to examine older couples’ experiences of home in dementia. The literature identified and reviewed through searching academic databases and Google Scholar is interdisciplinary and a thematic analysis suggests interactions of couplehood, home and dementia. To discuss these interactions, we use Bourdieu’s framework of field, capital, practice and habitus. We observe that habitus may gradually alter and fracture. But, in locating and supporting the performance of (adapted) everyday relationships and domestic practices, home has a distinct role in contributing to conserving habitus and in turn continuity of relationships and home. The gradual fracturing of habitus with the progression of dementia however also suggests that the continuity of relationships and home remain contingent, but this needs further investigation. It is an element of home futures that cannot remain invisible.     

The Effect of Parental Gender Roles on Students' Attitudes Toward Lesbian,Gay, and Heterosexual Adoptive Couples

All of Canada's provinces and territories legally recognize the right of gay and lesbian couples to adopt children; however, widespread acceptance of this practice has not been documented. Using an experimental design, with 506 university students, the present study assessed (1) attitudes toward gay, lesbian, and heterosexual adoptive couples; (2) the sex of the child to be adopted; (3) gender role characteristics of the adoptive couple; and (4) predictors of attitudes toward adoption by same-sex couples. Using vignettes describing potential adoptive couples, the results revealed that gay and lesbian couples were rated significantly less favorably than heterosexual couples when asked about outcomes for the adoptive child. Participants were more likely to approve of child placements with lesbian adoptive couples whose gender role characteristics emulated the traditional masculine/feminine dyad as compared to lesbian couples in which both partners displayed feminine characteristics. Statistically significant predictors of negative attitudes toward adoption by lesbian couples were religiosity and non-essentialist beliefs about homosexuality as well as endorsement of modern homonegative attitudes predicted negative attitudes toward adoption by gay male couples. Targeted education for social workers and adoption agency workers should be developed to ensure objective assessments of prospective same-sex adoptive couples regardless of their gender role characteristics.