Search results

To conduct an exploratory mixed-methods study of attitudes toward extramarital relationships in the context of spousal Alzheimer’s disease.

We present descriptive analyses of quantitative data from the National Social, Health, and Aging Project and of qualitative comments posted online by readers of newspaper articles that focus on extramarital relationships in the context of caring for a spouse with Alzheimer’s disease.

Analyses of the quantitative data indicate the Alzheimer’s caregivers report more negative attitudes toward extramarital sex in the context of spousal Alzheimer’s disease. However, this difference is driven by non-spousal caregivers’ attitudes; spousal caregivers have substantially less negative attitudes. Analyses of public comments suggest that those who are most negative are focused on traditional religious and family values. Those who express less negative attitudes espouse a compassionate pragmatism that makes allowances for caregiver needs in the context of managing the difficulties of the spouse-caregiver role.

Quantitative data are limited by the small number of Alzheimer’s caregivers; qualitative analyses are based on a convenience sample of online comments.

Findings can inform future research, educational initiatives for professionals, the media, and people living with Alzheimer’s disease and their family members.

The number of individuals living with Alzheimer’s disease and spousal caregivers will increase as the Baby Boomer generation ages. Norms regarding extramarital relationships in the context of caring for a spouse with Alzheimer’s disease are evolving.

Little social scientific research examines attitudes toward extramarital relationships in the context of spousal Alzheimer’s disease.

Purpose – To explore how home care social worker perceptions of their organizations' dominant goals and means affect direct service home care professionals' care delivery and meeting of patient needs for persons with Alzheimer's disease.

Methodology/approach – The study used a convenience sample of 34 home care social workers in the New York City metropolitan area and an extensive literature review.

Findings – The study found that literature indicates a dissonance between effective, evidence-based research psychosocial Alzheimer's disease interventions and Medicare home health policy which does not cover their use. Furthermore, interviews indicated home care social workers' different strategies to cope with organization demands, which affect their perceptions and care delivered to patients. The coping strategies are characterized using a modified version of Merton's (1957) adaptation model – conformist, innovator, and rebel.

Contribution to the field – The study is the first to use the voice of home care social workers to explore how perceptions of organizational dominant goals and means affect direct service home care professionals' care delivery and meeting of patient needs. The study asserts the need for a home care-based policy model drawing on the Hospice Medicare Benefit (HMB) to address Alzheimer's disease more cost-effectively with a more positive quality of life manner, thus limiting the adverse consequences of the evolving epidemic.

An overview of the impact of dementia that focuses on underdeveloped countries across the globe, and migrant and minority ethnic communities within the developed world. Increased longevity increases the risk of dementia and brings new challenges in terms of cultural perspectives and cultural obligations in the care of elders. The chapter examines these challenges in detail and their consequences in planning for support and care.

Preferences of both Alzheimer patients and their spouse caregivers are related to a willingness-to-pay (WTP) measure which is used to test for the presence of mutual (rather than conventional unilateral) altruism.

Contingent valuation experiments were conducted in 2000–2002, involving 126 Alzheimer patients and their caregiving spouses living in the Zurich metropolitan area (Switzerland). WTP values for three hypothetical treatments of the demented patient were elicited. The treatment Stabilization prevents the worsening of the disease, bringing dementia to a standstill. Cure restores patient health to its original level. In No burden, dementia takes its normal course while caregiver’s burden is reduced to its level before the disease.

The three different types of therapies are reflected in different WTP values of both caregivers and patients, suggesting that moderate levels of Alzheimer’s disease still permit clear expression of preference. According to the WTP values found, patients do not rank Cure higher than No burden, implying that their preferences are entirely altruistic. Caregiving spouses rank Cure before Burden, reflecting less than perfect altruism which accounts for some 40 percent of their total WTP. Still, this constitutes evidence of mutual altruism.

The evidence suggests that WTP values reflect individuals’ preferences even in Alzheimer patients. The estimates suggest that an economically successful treatment should provide relief to caregivers, with its curative benefits being of secondary importance.

Persons living with dementia (PLWD) constitute a global epidemic of more than 50 million people around the world, and tens of millions more serve as their caregivers. Public libraries must learn to assist, support, and sustain those with dementia in their communities. The good news is that some of the most powerful non-pharmacological interventions for PLWD – healthy lifestyle choices, lifelong learning for mental stimulation, and the stimulation and support of social networks – all are embedded in public libraries’ core mission. Thus, library services for the underserved population of PLWD and their caregivers can make a huge collective impact toward sustainable communities, social justice, and strong institutions.

Libraries can provide this help through dementia-friendly customer service and through programming that both supports individuals and develops and strengthens social relationships. Libraries can further promote good health and well-being, both through information resources and with targeted older adult programming. We can simultaneously contribute to social justice, mitigating the stigma and the deleterious effects of dementia which can be worse within minority communities. The positive impact of library dementia services can even be magnified through collective impact when different institutions within a community work together toward dementia-friendly standards.

This reflective chapter details the operation of library services for PLWD and their caregivers, providing concrete examples of dementia-friendly customer service, collection development, information and reference services, and a wide variety of older adult programming. Together, these library dementia services can create a powerful and positive impact through lifelong learning, mental stimulation, and social connections.

Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This chapter will share insights from an ongoing research programme to reduce family conflict in the context of dementia care while discussing the accompanying ethical considerations. Research into dementia care has primarily focused on improving outcomes for the care dyad, leaving the influence and input of the wider family unit under investigated. Family conflict can detrimentally impact the quality of care provided and leave caregivers vulnerable to psychosocial difficulties. Family conflict occurs in the context of dementia care but there is little research on how to reduce, or prevent, such conflict occurring. In this research programme, a systematic review investigated the effectiveness of interventions that include the wider family unit to reduce family conflict; only one study was included which evidenced the lack of interventions in this area. A qualitative scoping review was then conducted to explore the lived experiences of caregiving families with experience of family conflict and reported solutions. It was found that conflict occurred due to factors including care decisions and role transitions which impacted relationships and affected care provision. Solutions to conflict were less often reported, indicating an important gap in the literature. Interviews with Alzheimer's Society staff and volunteers revealed that stigma and denial surrounding dementia were prevalent, and families were often reluctant to seek external help. This research programme is currently establishing public patient involvement (PPI) to develop the research methodology and interview questions for people with dementia (PWD) and their family caregivers to explore their lived experiences and potential solutions to family conflict. To conclude, this research programme will propose a family-focused intervention aimed at systemic family conflict for those caring for someone with dementia.

Diet therapy or nutritional therapy has become a real challenge in the fight against the increasing number of modern illnesses such as obesity, diabetes, cardiovascular diseases and cancers. The scientific community has recognized the importance of studies that will support or rebut the association of certain nutrition/energy inputs with the prevention and/or improvement of certain diseases. Patient counseling is offered by medical doctors, nutritionists and dieticians, but patients often seek additional sources of information from popular media that may not be adequately scientifically supported. Whose responsibility is it when the Diet Therapy is not an effective treatment and where does the consequent ethical and moral responsibility lie?

This chapter argues for the importance of a nutritionally educated scientist evaluating the diets that are seen to be related with the health improvement also excluding diets that are mostly related to the patients’ well-being as the Mediterranean, DASH (Dietary Approaches to Stop Hypertension), Ketogenic and Vegetarian diet. Diet guidelines are often explained with linguistic variables (as “reduce the input of” etc.) which can be differently perceived by the end user. The interpretation if a linguistic variable is presented using the body mass index categories using a bell-shaped curve. The preferable area fits to the linguistic variable “acceptable BMI.” But also are indicated those areas which are less preferable. Those examples of information interpretations show the necessity of knowledge transfer. The quantity of information presented in diet guidelines can be experienced as a great muddle for patients; leaving them not knowing where and how to start. So, remains the ethical and moral responsibility of all links in the chain of nutritional and diet research and recommendations. Only objective and open-minded recommendations based on the latest scientific facts can gain confidence of the social, economical, and political subjects which must put the well-being of the population uppermost in their mind.