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

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

In sickness and in health: A qualitative study of elderly men who care for wives with dementia

It is estimated that approximately 1,000,000 elderly men care for spouses with Alzheimer's disease or other forms of cognitive impairment, yet we have only a limited understanding of their work, and central questions arise. What do men caregivers do, and what meanings do they ascribe to their work? What are their distinctive strengths and vulnerabilities, and what can we learn about men and caregiving from their stories? This qualitative study was based on in-depth, open-ended interviews with 14 elderly men who are primary caregivers to wives with dementia. All interviews were taped, transcribed, and manually coded. The resulting information then underwent analysis from which three major themes emerged: feelings of isolation and invisibility of their care work, a style of caregiving that jointly utilizes management and nurturing, and feelings of commitment, responsibility, and devotion.     

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

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

Exploring personhood in dining experiences of residents with dementia in long-term care facilities

Despite the shift toward using person-centered approaches in dementia care, the relevance and applicability of the concept “personhood” remains unclear in everyday practice and activities, such as mealtime experience for residents with dementia. Based on a qualitative study, this paper presents emergent themes at mealtimes that support or undermine personhood of twenty residents with dementia in two long-term care facilities. Methods of data collection included conversational interviews with residents with dementia, participant observations, focus groups with staff and examination of available documents. Data analysis identified eight themes: (1) outpacing/relaxed pace, (2) withholding/holding, (3) stimulation, (4) disrespect/respect, (5) invalidation/validation, (6) distancing/connecting, (7) disempowerment/empowerment, and (8) ignoring/inclusion. These findings raised questions about current practice and identified areas for improvement. Although staff approaches seemed to have the greatest impact on residents' experiences, the physical environment and organizational milieu were also responsible for hindering and facilitating staff to provide the best possible care and interaction.     

The controversial promises of cholinesterase inhibitors for Alzheimer's disease and related dementias: A qualitative study of caregivers' experiences

Since their introduction, clinicians have been engaging in debates over the therapeutic benefits of cholinesterase inhibitors (ChEIs) in Alzheimer's disease and related dementias (ADRD). Against this backdrop of controversy, caregivers' views and experiences have been largely ignored. This has occurred despite the fact that this group may provide insights into these drugs in ways not captured by clinical research. To address this gap in knowledge, the current study examines 25 caregivers' narratives about the treatment of relatives diagnosed with mild to moderate ADRD and treated with ChEIs. The findings reveal an appraisal of cholinergic effects whereby caregivers question the benefits of the drugs, generally not knowing whether to attribute stabilization or improvements to them or not but also fearing termination of the drug ‘just in case’ there is some benefit. Caregivers justify their belief in ChEIs' long-term effectiveness primarily by invoking non-medicated prognostic scenarios of more rapid decline and loss of self. In addition, the study explores the meaning caregivers attribute to ChEI effects vis-à-vis a pharmaceutical discourse which frames these drugs as a source of hope.     

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.     

Am I My Brother's Keeper: Adult Siblings Raising Younger Siblings

Adult siblings raising their younger siblings is a family configuration that rarely comes to mind; yet, in the United States adult siblings are the third largest relative caregiver group. The experiences of a sample of 77 adult siblings raising 154 younger siblings are described. The findings revealed that adult sibling caregivers may have multiple unmet service needs but they have a relatively high degree of parenting ability, which is increased by the availability of religious-based services, availability of friends and neighbors, and the ability to network with other caregivers. Additionally, adult siblings who are parenting a younger sibling who has special needs are more likely to commit to adopting that sibling. Social work practice strategies that can be used to address the service needs of adult sibling caregivers are provided.     

Conversation takes two: understanding interactions with people with dementia

The term ‘person-centred’ underpins dementia policy and approaches to support people with dementia. However, ‘person-centredness’ remains hazy, and words and definitions matter greatly when they are at the heart of defining what happens in people’s lives. Drawing on data from an ongoing project, this article suggests that conversations which include a person with dementia can elucidate how ‘relational’ support is enacted in practice and the implications this can have on our understanding of ‘person-centredness’. Identities are shaped in part through how we speak to people, and how they speak to us. This is particularly pertinent to the aims of ‘person-centredness’. A conversation analytic approach to dementia support may therefore move us towards seeing ‘personhood’ as jointly constructed and reconstructed through interactions with others.     

Identity,selfhood and dementia: messages for social work

Dementia has been identified as a policy priority area for the European Union (EU). Given projected figures on the global increase in dementia over the next few decades, working with people with dementia is likely to become an even more prominent area of activity for social workers in older people's services. Recent research has begun to engage with the subjective experiences of people with dementia and there is considerable focus within nursing literature on their active efforts to maintain identity and selfhood. However, these issues have received little attention within the domain of social work. This paper reviews recent research on the subjective experiences of people with dementia and discusses the implications for social work in relation to: early intervention; communication and assessment, and support arrangements. Based on experience in England, it is argued that the current policy and practice context constrains social work's ability to respond to these issues and that a supportive organisational context, as well as high levels of skill, time and commitment, are required if concepts of personhood and citizenship are to have meaning in practice.     

Diversity training for the community aged care workers: A conceptual framework for evaluation

Older Australians are an increasingly diverse population, with variable characteristics such as culture, sexual orientation, socioeconomic status, and physical capabilities potentially influencing their participation in healthcare. In response, community aged care workers may need to increase skills and uptake of knowledge into practice regarding diversity through appropriate training interventions. Diversity training (DT) programs have traditionally existed in the realm of business, with little research attention devoted to scientifically evaluating the outcomes of training directed at community aged care workers. A DT workshop has been developed for community aged care workers, and this paper focuses on the construction of a formative evaluative framework for the workshop. Key evaluation concepts and measures relating to DT have been identified in the literature and integrated into the framework, focusing on five categories: Training needs analysis; Reactions; Learning outcomes, Behavioural outcomes and Results The use of a mixed methods approach in the framework provides an additional strength, by evaluating long-term behavioural change and improvements in service delivery. As little is known about the effectiveness of DT programs for community aged care workers, the proposed framework will provide an empirical and consistent method of evaluation, to assess their impact on enhancing older people’s experience of healthcare.     

Embodiment,care and practice in a community kitchen

This article explores activist practices in a community kitchen based in the south of the United Kingdom with a dual focus on social and environmental justice. It draws on these practices to develop further feminist, and specifically ecofeminist, concepts of care ethics by arguing that embodiment is an essential element in lived relationships of care. Moreover, we show that these embodied components enable learning that can disrupt settled understandings of social and environmental injustices, including negotiating tensions relating to class and race. We demonstrate how this disruption combines with imaginative processes to stimulate critical political analysis of the relationship between local contexts of need and broader socio‐political structures and power relations. Crucially, we work towards illuminating how care ethics and social practice combine to stimulate and inform political action.     

Dementia Problem Behavior and the Production of Informal Caregiving Services

Informal caregivers of individuals with Alzheimer's disease spend a considerable amount of time providing care. In this paper, we use Grossman's health production and Becker's time allocation models to develop a model of informal care provision to elderly dementia patients. In our model, time inputs produce caregiving services, which provides utility to the caregiver, but reduces leisure. We assume that time is less productive of services on the margin as the disease progresses. In this framework, an increase in patients' disease severity does not necessarily increase informal caregiver time input. The cost of formal care establishes a reservation price for informal caregiving. When the costs of informal caregiving rise above this reservation level, the patient is institutionalized. We test empirically the effect of deterioration in the patients' condition, proxied by both disease severity and dementia problem behavior, on informal caregiving time. We find that dementia-related problem behaviors and functional limitations significantly increase inputs of informal caregiving time. Patients' problem behavior exerts a modifying effect on functional limitations, and patients' comorbidities have no effect on informal caregiving time.     

Examining the trajectories of children providing care for adults in rural Kenya: Implications for service delivery

Research on caregiving children tends to be limited to children's caregiving experiences of parents with a specific disease or disability. This has led to a common perception that children's caregiving is a single, uniform and often long-term experience. Whilst this is most certainly the case for many children in economically more advanced countries, this may not hold true in rural Africa, where poverty and AIDS can have significant knock-on effects on entire families and communities. This paper seeks to develop a more complex understanding of children's caring experiences by asking children whom they have cared for over time and explore the different pathways that lead to their caregiving at different stages of their lives. The study reports on qualitative data collected from 48 caregiving children and 10 adults in the Bondo district of western Kenya in 2007. A multi-method approach was adapted, with historical profiles, Photovoice and draw-and-write essays complementing 34 individual interviews and 2 group discussions. A thematic network analysis revealed that children's caregiving was not confined to a single experience. Children were observed to provide care for a number of different family and community members for varying periods of time and intensities. Although their living arrangements and life circumstances often gave them little choice but to care, a social recognition of children's capacity to provide care for fragile adults, helped the children construct an identity, which both children and adults drew on to rationalise children's continued and multiple caring experiences. The study concludes that agencies and community members looking to support caregiving children need to consider their care trajectories — including whom they care for as well as the order, intensity, location and duration of their past and likely future caring responsibilities.     

Pathologizing behavior: Meanings of behaviors in dementia care

Deficit and problem-based approaches to behavior stigmatize persons with dementia and cause great unnecessary suffering. In order to reduce the harm caused to persons misunderstood, it is important to understand the process by which staff attach meaning to behaviors and how those meanings ultimately influence how staff respond to behaviors. To this end, this research sought to examine the perceptions and meanings that staff attach to behaviors, how staff experience these behaviors, and the role that meanings and experiences have in staff actions and responses to specific behaviors. This paper focuses on one sensitizing concept that emerged from our study — pathologizing behavior — that reflects how behaviors become pathologized and problematized in the long-term care context. Conducted as part of a larger interpretive grounded theory study, active interviews were conducted with 48 staff members working in a range of positions in long-term care homes in Ontario, Canada. All staff interpreted and placed residents' behaviors in context through a complex process that started with the process of filtering behavior through the lens of pathology, and guided how staff then assigned meaning to the behaviors, how they characterized behaviors as “challenging”, and ultimately reacted through crisis management. The findings demonstrate the impact biomedical discourses have on meanings attached to behaviors and responses to behaviors and point to the need for alternative discourses that emphasize understanding meanings of actions using multidimensional lenses.     

Foster care in India: An exploratory survey of the community perceptions and prospects for implementation of foster care in a developing nation: A study in Udaipur,Rajasthan, India

This study was conducted in order to assess the prospects for implementing foster care as an alternative to the dominant system of institutional care available to orphaned and abandoned children in India. 653 families in urban Udaipur participated in a mixed-methods based assessment of receptivity to foster and adoptive care. The majority of those who responded reported receptivity to the idea of foster care as an alternative to institutional care. However, analyses demonstrated that respondents also perceived barriers to implementing systematic foster care, particularly with regard to family recruitment due to problems securing family and community support for participation. The results are discussed in light of governmental calls for non-governmental organization and other stakeholders to institute alternatives to foster and adoptive care. The results of this study have applied significance for organizations and practitioners seeking to implement care alternatives for orphan and abandoned children in India.     

Unlicensed care homes in the United States: a clandestine sector of long-term care

Residential care facilities operating without a state license are known to house vulnerable adults. Such unlicensed care homes (UCHs) commonly operate illegally, making them difficult to investigate. We conducted an exploratory, multimethod qualitative study of UCHs, including 17 subject matter expert interviews and site visits to three states, including a total of 30 stakeholder interviews, to understand UCH operations, services provided, and residents served. Findings indicate that various vulnerable groups reside in UCHs; some UCHs offer unsafe living environments; and some residents are reportedly abused, neglected, and financially exploited. Regulations, policies, and practices that might influence UCH prevalence are discussed.     

CHAPTER 4: Ethical Considerations Facing Society in Rehabilitating Severly Disabled Persons

No abstract available for this article.     

Kinship care in Australia

Kinship care is the fastest growing form of out‐of‐home care placement in Australia. It is now a more common form of placement than foster care in some Australian states and is the most common form of placement for Indigenous children nationally. This paper reviews national data and reports ?ndings from a state (New South Wales) study of the experience of kinship carers, children and workers. Relative carers, children and child welfare caseworkers were found to identify psychological bene?ts, family obligation and criticism of other forms of care as reasons for preferring kinship care. Legislation and policy, particularly the Aboriginal Child Placement Principle, are also identi?ed as factors contributing to the rise in kinship care. Concern for the high levels of stress among carers and the low levels of monitoring of children's safety and well‐being are discussed and a stronger policy and practice response from government agencies is proposed. Indications of new policy and programme responses are demonstrated by several recent initiatives at state and national levels. Copyright © 2004 John Wiley & Sons, Ltd.     

In their voices: Identity preservation and experiences of Alzheimer's disease

Although much research pertaining to Alzheimer's disease (AD) explores the impact on caregivers, there is a general paucity of data on experiences of living with the condition. Contemporary medical initiatives to diagnose people earlier in the illness trajectory make it increasingly possible to hear the voice of people with memory loss, which can improve both public perception and policy. This study examined the impact of being diagnosed with early AD on identity construction. Respondents highlighted aspects of being diagnosed that were instrumental in making sense of changes in their lives and identities, including defining moments, to tell or not to tell, and preservation. Findings suggest that understanding how to identify memory deficits, the context of diagnosis, and the techniques employed for managing illness are crucial to subjective experiences. Despite normative expectations and the rhetoric of loss, respondents deliberately manage their interactions to make sense of their lives and preserve themselves.     

Child care quality and affordability: Are they compatible?

Mothers have traditionally been the primary caregivers of children under school age in the United States. Increasing numbers of parents are seeking part-time or full-time alternatives for assistance with parenting and child care outside of the home. The variety of types of child care arrangements has greatly increased in the past 50 years. This paper addresses quality child care, child care options and cost. Despite the increase in child care provided outside the home, parents often have difficulty distinguishing quality care from less than quality care. Two prime considerations are quality and affordability. This paper addresses the need for a comprehensive spectrum of policies and child care programs for families in various cultural, economic, and social environments.