Cognitive approaches to enabling people to live well with dementia

Ye

Relationship continuity and emotional well-being in spouses of people with dementia

YesObjectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia

Does size matter? The benefits and challenges of voluntary sector partnerships in dementia service provision for South Asian communities in England

YesIn response to the need for improved access to dementia services for minority ethnic communities, the Alzheimer’s Society piloted, in 2014, the Information Programme for South Asian Families (IPSAF), an adapted version of its existing course for carers. It delivered this in partnership with local black and minority ethnic community and faith organisations, a new approach for the Alzheimer’s Society. In most cases, the partnerships formed were strong and effective, and have given rise to ongoing plans for joint working that bring benefits to both the local organisations and the Alzheimer’s Society. However, the current realities of UK voluntary and community sector dynamics raise questions of ownership and issues around how to establish genuine partnerships. In this article, we reflect on what the IPSAF experience indicates about the potential for equitable partnerships between small and large organisations, and draw out lessons for building effective, mutually beneficial relationships

Consensus Views on Advance Care Planning for Dementia: A Delphi Study

yesThe uptake of advance care planning (ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia. A three-round Delphi study explored views of how and when ACP should be addressed, what should be covered, who should be involved and why rates of ACP are low. Seventeen participants took part comprising family members, old age psychiatrists and policy makers. Thirty-two items reached consensus. The panel agreed on 11 different areas for discussion. They concurred that ACP was best addressed after the person has come to terms with the diagnosis when the individual feels ready to do so. There was a consensus view that the process should be couched in terms of ‘certain possibilities’. Consensus items emphasised personal choice and autonomy, while also prioritising the need to discuss financial aspects and to include spouses. There was no consensus that professionals should be involved, although the panel viewed them as carrying some responsibility for low uptake. It is suggested that ACP should include general discussion of values as well as coverage of specific points. Professionals need to offer discussion and information on ACP, but also make clear that the patient has the right to choose whether to pursue ACP or not

Dementia detectives: Busting the myths

yesDescribes the one-hour dementia awareness programme developed for secondary schools

The need to “carer proof” healthcare decisions

yesPopulation ageing and fiscal austerity are set to increase the reliance on family carers, who already provide much of the support for people with long term health conditions. Although most carers are willing, providing care can be hugely stressful, affecting mental and physical health1 and resulting in social isolation and financial hardship.2 When under strain, carers are less likely to be effective, increasing the risk that the care recipient is admitted to hospital or a care home.3 Health systems could reduce strain on family carers by routinely considering carers’ needs alongside patients’ needs in everyday healthcare decisions—a concept we term “carer proofing”.non