To Coordinate Information in Practice: Dilemmas and Strategies in Care Management for Citizens with Dementia

ABSTRACT

This qualitative study, based on 19 interviews with care managers, explores the experiences of care-managers involved in assessing the need for social services for people with dementia. The study shows that social workers, as care managers, face several dilemmas in their practice concerning people with dementia, in relation to the exchange of information and in regards to conflicting interests between different actors involved in the assessment of the need for support for people with dementia. Strategies used to handle problematic situations that arise in their work are using other sources for information (e.g., relatives and actors from other professions), persuading, and pursuing creative forms of consent. However, the study shows that dilemmas and strategies used generate other, prominently moral, dilemmas for care managers in their practice, which relate to participation and self-determination by the person with dementia. The study shed light on the problematic situation for care managers in their work to coordinate information and further the new “realities“ that they encounter as well as on how to handle these new situations. This study suggests possible ways to improve the everyday work of care managers, as well as how policies concerning social work and people with dementia can be improved.     

What is a family? Constructions of family and parenting after a custody transfer from birth parents to foster parents

The subject of stability for children in long‐term foster care is an emerging field within social work with vulnerable children. In Sweden, the adoption of foster children is not a common occurrence. Instead, when a child has been placed in foster care for 3 years, the local social welfare committee will consider whether the custody of the child should be transferred to the foster parents regardless of the circumstances of the birth parents, in order to secure stability and a sense of family belonging. Consequently, custody transfers raise questions such as “who is family?” and “who is a parent?” This qualitative interview study with custodians and young people who have experienced custody transfer highlights that who counts as family and as a parent is ambiguous. This article draws attention to how negotiations about family and parenthood revolve around biological, emotional, and relational dimensions. Furthermore, we show that stability for children in care has to be understood in terms of processes over time and not as the result of a single decision of custody transfer. Consequently, social workers need to take several aspects into account when they assess family belonging and stability for children in foster care.     

Choice and control in social care: Experiences of older self-funders in England

This paper considers the experiences of older self-funders in England in the context of policies promoting choice and control. Self-funders are people who are not state-funded; they pay for social care from their own resources. Choice and control have been operationalized through personal budgets, based on the assumption that managing resources enhances ability to access appropriate care and support. This paper uses data from 40 qualitative interviews with self-funders and their relatives, and 19 with professionals. It explores the impact of the financial and social capital that self-funders are assumed to have and asks how older self-funders experience choice and control. The study found that older self-funders drew on personal experiences, family, and friends for information; were reluctant to spend their wealth on care due to competing priorities; and felt they had more control over the timing of decisions than people who were state-funded. Personal wealth appears to be perceived differently to funds “gifted” to people through cash for care schemes.     

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the ‘live’ discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer’s disease, who experienced a ‘live’ discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual’s terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a ‘live’ discharge.     

Considerations in Care for Individuals with Intellectual Disability with Advanced Dementia

Abstract

A number of physical, psychosocial, or ethical issues related to the care of the individual with advanced dementia are reviewed and related to individuals with intellectual disabilities. The sources used include the published literature and illustrations drawn from personal observations. The author notes that through anticipation and early planning, advanced directives and service planning (which looks to adaptation of services and other care management interventions), can effectively impact care at the end. Areas that need to be addressed include technical information, including a review of and, as appropriate, adaptation of general advanced dementia resources, relief, rest, support, reassurance, receipt of on-going information, participation in planning, a sense of humor, and appreciation. Also noted, are the differences experienced because of the presence of paid staff as carers and residence outside of the family home. It is concluded that, although the goals of quality care is the same for all people with advanced dementia, the process by which to reach these goals often needs further consideration and adaptation for people with intellectual disabilities.     

Professional Perspectives on Decision Making about the Long-term Care of Older People

With the increasing pressure on social and health care resources,professionals have to be more explicit in their decision makingregarding the long-term care of older people. This groundedtheory study used 19 focus groups and nine semi-structured interviews(99 staff in total) to explore professional perspectives onthis decision making. Focus group participants and intervieweescomprised care managers, social workers, consultant geriatricians,general medical practitioners, community nurses, home care managers,occupational therapists and hospital discharge support staff.The emerging themes spanned context, clients, families and services.Decisions were often prompted by a crisis, hindering professionalsseeking to make a measured assessment. Fear of burglary andassault, and the willingness and availability of family to helpwere major factors in decisions about living at home. Serviceavailability in terms of public funding for community care,the availability of home care workers and workload pressureson primary care services influenced decision ‘thresholds’regarding admission to institutional care. Assessment toolsdesigned to assist decision making about the long-term careof older people need to take into account the critical aspectsof individual fears and motivation, family support and the availabilityof publicly funded services as well as functional and medicalneeds.     

Taking social policy personally: How does neuroticism affect welfare state attitudes?

The role of the “Big Five” personality traits in driving welfare state attitudes has received scant attention in social policy research. Yet neuroticism in particular—a disposition to stress, worry, and get nervous easily—is theoretically likely to be an important driver of welfare attitudes precisely because welfare states deliver social “security” and “safety” nets. Using cross-sectional data from the German Socio-Economic Panel, we study three distinct attitude types (dissatisfaction with the social security system, feelings of personal financial insecurity, and preferences for state provision) and multiple social need contexts (including unemployment, ill health, old age, and nursing care). Controlling for established explanations such as self-interest, partisanship, and socialization, neuroticism does not systematically affect support for state provision. But it robustly increases general dissatisfaction with social security, as well as financial insecurity across various need contexts. Neurotic people are thus less happy with welfare state programmes across the board, yet they also appear to need these programmes more. This trait may be an important deeper layer driving other social attitudes.     

Understanding Ambiguous Loss in the Context of Dementia Care

Abstract

This study examined the experience of ambiguous loss for family members caring for a person with dementia living in a long-term care facility. Data for this study came from in-depth, active interviews conducted with 38 adult daughters and 23 adult sons caring for a parent with dementia living in a long-term care facility. The stories shared by the adult children revealed that ambiguous loss in the dementia context involves a long, on-going process of several phases including anticipatory loss, progressive loss and acknowledged loss. The nature of the ambiguity shifts and the experience changes for families as they journey through the ambiguous loss process. Acceptance and avoidance were the two most common coping strategies used in dealing with acknowledged loss.     

Managing the Care Home Closure Process: Care Managers' Experiences and Views

This paper reports case study research that set out to identifywhat care managers do during independent care home closures.Little research has focused on the way in which care homes forolder people are closed in England, or what those involved thinkabout the process. This paper reports the activities and viewsof care managers directly involved in helping older people relocatefrom care homes that were closed by their owners. During suchclosures, residents and their families have no choice but tomove, usually to a deadline, and with little control over theprocess. Care managers have a responsibility to help arrangealternative care for those current residents who are publiclyfunded, and to offer information and support to those fundingtheir own care (the ‘self-funded’). Closure relatedactivities could involve considerable staff time. Care managementarrangements, including the organization of teams and provisionof needs assessments, varied across authorities. The care managersdescribed drawing on emotional counselling and inter-personalskills, as well as practitioner knowledge and experience, particularlywhen offering support and advice about finding appropriate newhomes. Tensions between aims, constraints on their actions andviews of good practice are identified.     

Participation of youth in decision‐making procedures during residential care: A narrative review

Participation in decision‐making procedures of young people in care is considered a key element that affects their current or future living circumstances and might improve the quality of decision‐making on and delivery of provided services. This narrative literature review, covering the period 2000–2016, focuses on the opportunities of young people to participate, the challenges and facilitators to participation, and the outcomes of care related to participation. Sixteen studies met our search criteria. Several studies show that young people seem to have limited possibilities to “meaningful” participation in decision‐making. Various challenges and facilitators in the participation process emerge with regard to the level of the young person, the professional, and the (sociocultural) context. None of the studies provides evidence for a connection between the “amount” of youth participation in decision‐making and/or treatment during the care process and the outcomes of residential care. Implications for research and practice are reflected upon.     

Charging and Quasi-Markets in Community Care: Implications for Elderly People with Dementia

Social services authorities in the UK are increasingly involved in charging and fee collection activities with clients in receipt of community care services. This article explores the implications of these developments for elderly people with dementia. The starting point of the article is a critique of existing legal and administrative options for handling other people's money, including the difficulties and dilemmas raised for both paid and unpaid carers by the existing arrangements. This is then related to the failure of charging and fee collection systems which have developed as a result of the community care reforms to address the particular needs of elderly people with dementia. A case study of policies in one local authority is outlined and this is followed by the presentation of the view of 37 fieldlevel professionals who were interviewed in focus groups. The concerns of these respondents included the complexity of the assessment task, conflicts between care managers and finance/revenue staff, the difficulty of defining and responding to financial abuse, and dilemmas over the extent to which relatives and carers should be trusted. The final section of the article considers the implications of a move to quasi-markets in social care for elderly people with dementia, particularly in terms of their vulnerability to financial exploitation.     

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

ABSTRACT

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the “diagnostic phase,” (2) the “explorative phase,” (3) the “adaptive phase,” and (4) the “closure phase.” The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.     

“Build a friendship with them”: The discourse of “at‐risk” as a barrier to relationship building between young people who trade sex and social workers

Young people in statutory care and protection interact with social workers, who hold potential to provide a supportive adult role in their lives. Many however, run away at an early age and end up on the street trading sex for money or other favours. There is potential to improve outcomes for young people in care if the relationship between young people and their social workers is better addressed. This paper uses data from a qualitative study of 14 young people who traded sex and who had experienced interactions with social workers. A thematic analysis identified three themes: the rigidity of social work practice; contesting the family situation; and resisting the at‐risk label. We argue that to have any impact on outcomes for young people in care, social workers need to prioritise relationship‐building above the need to conform to organizational protocols and guidelines. Such guidelines assist the social worker in assessing whether family situations pose high risk for a young person, but the “at‐risk” label is contested by young people, which results in a lack of trust and a barrier to relationship building.     

Adults with Down Syndrome and Alzheimer's Disease

Abstract

An increasing number of people with Down syndrome are at risk of dementia resulting from Alzheimer's disease. Many reside in community group homes. When they are affected by dementia, the challenge to agencies providing group homes is how to best provide continued housing and provide effective dementia-related care management. In the general population, long term care is typically provided in nursing facilities, often in special care units (SCUs). This study evaluated select factors found in group homes and SCUs to determine which is able to provide a better quality of life for people with Down syndrome affected by dementia. Interviews, using quality of life indicators, were conducted at 20 sites, equally selected from group homes and SCUs, on the basis of their experience with people with dementia. Results indicate that group homes can provide conditions associated with better quality of life and, additionally, operate with lower staffing costs due to the non-utilization of medical staff.     

Attitudes towards reproductive technologies for humans

Abstract

The aim of this exploratory study was to measure attitudes towards various applications of real and hypothetical reproductive technologies for humans, including prenatal gender selection. A total of 121 undergraduate university students completed a questionnaire measuring knowledge, interest, trust, risks and benefits, and attitudes towards reproductive technologies for humans. An exploratory factor analysis showed that participants rated the use of these technologies as unacceptable if it was for personal enhancement but acceptable for “medically useful” applications. Participants also reported not having a gender preference for their (hypothetical) unborn child, were they to use prenatal gender selection, an application very few approved of. Results failed to support a general desire to use prenatal gender selection or to hypothetically favour one gender over the other. Attitudes towards reproductive technologies cannot be simply summarised in a “pro or against” manner as they heavily depend on the context.     

Regulating the delivery of cash‐for‐care payments across Europe

The article aims to understand how governments across Europe have modified the regulation of the delivery of cash‐for‐care schemes (CfCs) to dependent older people since the beginning of the century. In our terminology, the regulation of the CfCs delivery defines the norms, rules, and practices that public actors adopt to manage how beneficiaries can use the benefits. To discuss the regulation of CfCs delivery, we employ an original framework that take three analytical dimensions into account: the degrees of freedom in benefits' utilization (“CfCs utilization” dimension), the provision of information/orientation/advices/counselling to older people and families (“professional support” dimension), and the relationship between the delivery of CfCs and the delivery of the other publicly funded long‐term care inputs (“care system” dimension). The analysis adopts a comparative perspective, looking at six countries—Italy, Austria, the Netherlands, France, Germany, and England. Among various findings, the main one consists in showing that there has been a shared and increased interest in consolidating the regulation of CfCs delivery. This trend has been mostly directed towards the new policy aim of strengthening the professional support, a goal underestimated in the past, when this dimension was not a major topic of both debate and practice concerning CfCs across Europe.     

The turn to optional familialism through the market: Long‐term care,cash‐for‐care,and caregiving policies in Europe

Cash‐for‐care (CfC) schemes are monetary transfers to people in need of care who can use them to organize their own care arrangements. Mostly introduced in the 1990s, these schemes combine different policy objectives, as they can aim at (implicitly or explicitly) supporting informal caregivers as well as increasing user choice in long‐term care or even foster the formalization of care relations and the creation of care markets. This article explores from a comparative perspective, how CfC schemes, within broader long‐term care policies, envision, frame, and aim to condition informal care, if different models of relationships between CfC and informal care exist and how these have persisted or changed over time and into which directions. Building on the scholarly debate on familialization vs. defamilialization policies, the paper proposes an analytical framework to investigate the trajectories of seven European countries over a period of 20 years. The results show that, far from being simply instruments of supported familialism, CfC schemes have contributed to a turn towards “optional familialism through the market,” according to which families are encouraged to provide family care and are (directly or indirectly) given alternatives through the provision of market care.     

Social Inequality under a New Social Contract: Long-term Care in Japan

The 1990s saw the beginning of new developments in the social policy agenda of Japan. A combination of further cuts in social expenditure and increases in financial resources through various means has become inevitable in response to the increasing cost burden of an ageing society, the prolonged recession and changes in the Japanese family. In this context, “kaigo hoken” (long‐term care insurance) was introduced in 2000 to increase revenue and fill the gap vacated by the family. The scheme introduced a different concept to the public: that long‐term care was no longer “expected’’ from the family or “allocated” by the state, but has become part of a “social contract” based upon a system of mandatory contributions, uniform entitlements and consumer choice. This paper first explores the role of the new scheme in creating social inequalities among individuals (and families). A panel survey is used to highlight different patterns of care provision and the varying degree of financial pressure among different income groups. Second, based on qualitative research, the paper examines how the new scheme has transformed the relationship between older people and their families who have played a central role in this arena. The scheme has consequently divided “traditional” families and their liberal counterparts, as a result of care work being “commodified”. It is apparent that this scheme has not only responded to fill the existing care gap but may also help accelerate the changes that have been taking place for the last two decades.     

Abstracts

A burgeoning literature on narrative identity has emerged during the last decades simultaneously with a “performative turn” in the methodology of qualitative social research; both changes indicate a move away from the paradigm of “representation” that emphasizes linear and singular interpretation of “facts” and toward an acknowledgment of the complexity of the social world preferring a dialogic space, open for multiple interpretations and voices. This article aims to explicate how a nonrepresentational narrative stage performance, “We Are All the Same,” by a group of people who had suffered from mental illness opened up space that made transformation possible.     

Economic and social inclusion of person with disability and transgender through skills development program of BRAC: A qualitative study

This article is based on the Skills Training for Advancing Resources (STAR) project for the youth initiative of the Bangladesh Rural Advancement Committee (BRAC) in Bangladesh. The objective was to explore the consequences of social and economic inclusion of this project for the persons with disability (PWDs) and transgender (TG) youth people. The research focused on how inclusive programmatic interventions created multidimensional impacts among the “marginalized” and “excluded” PWD and TG youths at the grassroots level. This study adopted a qualitative approach where in-depth case interviews and observation were applied for data collection. PWD and TG graduates, master craft persons (MCPs), employers, and program staff members were the participants in this study. Results found that PWD and TG youths faced vulnerabilities and social stigma in their lives and livelihood trajectories due to their physical inability and low level of social dignity. The STAR project has a certain level of contribution to the livelihoods of PWD and TG people, where these helped them to gain their social, cultural, and economic capital. Findings would be an important guideline for policymakers, NGO managers, and human rights workers.