Dementia

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.

Purpose: The purpose of this paper is to describe a case study to test the applicability of the discrete choice experiment (DCE) method to assess the preferences of carers of people with dementia. The focus of enquiry was home care provision. Design/methodology/approach: A multi-method approach was adopted for this pilot study. A literature review identified key characteristics of home care for dementia. This informed consultations with lay representatives. Key attributes of home care for the DCE were identified and formed the basis for the schedule.

Purpose: The purpose of this paper is to describe the development of Compass workers: a commissioned peer support model to support those caring for someone with dementia. Design/methodology/approach: The paper offers a descriptive summary of how Compass workers came to be and is informed by consultations with key stakeholders and a service evaluation encompassing both quantitative and qualitative aspects.

As the population ages, there is a growing need for families and friends to support frail older adults in their home. Although many family caregivers report feeling satisfied with their caring role, a growing number of caregivers also feel physically, emotionally, and financially drained by the experience. The purpose of this literature review is to explore the experience of compassion fatigue (CF) among family caregivers, and to suggest strategies to combat this possible consequence of caregiving.

Purpose: The purpose of this paper is to look at concerns about risk/abuse expressed spontaneously by people with dementia (PwD) and their carers in narratives describing their journeys with dementia. Design/methodology/approach: A total of 35 narratives were elicited from PwD, carers of PwD and couples where one partner was living with dementia as part of a study on the impact of producing narratives on PwD and their carers. Participants were found to allude to risk/abuse, or specifically mention thoughts on risk and abuse in their narratives.

Purpose: The purpose of this study is to explore the grief/bereavement process of Alzheimer's Disease and Related Dementias (ADRD) caregivers following death of a family member in long-term care (LTC) and develop a theoretical model of this phenomenon based upon in-depth individual interviews. There is limited evidence examining ADRD caregiver grief and bereavement following family member death in LTC settings. Grounded Theory methodology has not been utilized to explore this phenomenon.

Background In Australia, dementia is a national health priority. With the rising number of people living with dementia and shortage of formal and informal carers predicted in the near future, developing approaches to coordinating services in quality-focused ways is considered an urgent priority.

To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid.

Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers.

Care of the elderly with dementia represents one of the major challenges for the modern society worldwide. The burden of dementia care often falls on the family members, entailing heavy psychosocial and economic consequences. The aim of this study was to evaluate the caregiver's perspective concerning the support for disease management on behalf of the physicians and the local Sicilian administrations (Italy), and the burden of care and effects on their lifestyle, to propose new prevention strategies and service for managing dementia and caregiver's burden.