Dementia

Background: Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives.

People with young onset dementia (YOD) experience many unique challenges. Similarly, family caregivers experience changing personal, familial, and societal roles. However, YOD is under recognized and under resourced with a lack of dedicated models of care. The current study explored family members' experience of caregiving for persons with YOD to identify barriers and opportunities to accessing support. Qualitative interviews were conducted with six family caregivers, using interpretative phenomenological analysis.

Background: There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation.

Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers' DRs on their well-being, satisfaction with life (SwL) and caregiving stress.

Background and Objectives The Savvy Advanced psychoeducation program was designed for previously trained caregivers of persons living with dementia to refine their problem-solving and planning skills and enhance their sense of self-efficacy as dementia progressed for the care recipient. Implementation, feasibility, participant satisfaction, and perceived program benefits were also evaluated. Research Design and Methods A total of 100 dementia family caregivers participated in the 12-month evaluation of Savvy Advanced.

Objective: Neuropsychiatric symptoms (NPSs) are identified as important care-recipient variables in terms of the impact on carer distress. The aim of this study was to determine whether specific neuropsychiatric disturbances in people with Alzheimer disease (AD) and dementia with Lewy bodies (DLB) differentially impact carer distress. Methods: This was a cross-sectional study of people diagnosed with AD and DLB and their primary carers.

Advance care planning for people with dementia has become a focus of dementia care policies in developed countries. In New Zealand, the framework for dementia care relies on the person with dementia having a level of competence to enable them to participate in the planning process. For people with dementia, it may be too late to initiate these discussions in terms of decision-making capacity. Consequently, decisions about end-of-life care for people with dementia are typically made by a family member who acts as a surrogate decision maker on behalf of the person with dementia.

Assistive technologies (ATs) are being 'mainstreamed' within dementia care, where they are promoted as enabling people with dementia to age in place alongside delivering greater efficiencies in care. AT provision focuses upon standardised solutions, with little known about how ATs are used by people with dementia and their carers within everyday practice. This paper explores how people with dementia and carers use technologies in order to manage care. Findings are reported from qualitative semi-structured interviews with 13 people with dementia and 26 family carers.

Background Established in 2013 this network of volunteer family carers is a national advocacy group that presents a vital opportunity for carers to use their voice to raise awareness of issues affecting families living with dementia in Ireland. The network is facilitated by a dementia specific service provider. These carer advocates wish to present on a piece of qualitative research they have recently conducted on the topic of carer resilience at the advanced stages of caring for a loved one with dementia.

Background People with dementia and carers do not always access respite services in a timely manner, and in some cases, they do not access respite services at all. While carers' perspectives on respite access have been explored, other stakeholder perspectives, especially those of people with dementia, are under-represented in the existing literature. The aim of this study was to synthesise multiple stakeholders' perspectives, including people with dementia, on accessing respite services. Methods Purposive sampling was employed.