How people with young-onset dementia living in the community Australia, and their families, make decisions and plans for the future

Abstract

Background Young-onset dementia (YOD) is defined as onset of symptoms of dementia before 65 years of age. In this context, the future can be difficult to contemplate and discuss with others. Few studies have explored how people with YOD and their families approach decision-making for the future. Aim The aim was to examine how people with YOD who live in the community in Australia, and their families, approach decision-making for the future, and the extent of their involvement. A secondary aim was to explore how they engaged in shared decision-making, supported decision-making, and advance care planning (ACP). Methods Participants were either community-dwelling people with early to moderate young-onset Alzheimer’s disease (AD) or frontotemporal dementia (FTD) or carers of community-dwelling people with young-onset AD or FTD. The study employed interpretive description and was guided by Kitwood’s theory of personhood in dementia. Semi-structured interviews were conducted with 14 people with YOD and 28 family members. Constant comparative analysis was conducted for emergent themes, comparisons and interplay between themes. Findings Participants were inclined to focus on the present rather than the future, thus avoiding decision-making, particularly about future care, which inevitably precipitated reactive decisions. Proactive decision-making often occurred for legal and financial matters. Decisions tended be made within the family unit, consisting of a core dyad involving the person with YOD and a family member, often supported by members of the broader family. There was little participant engagement in shared decision-making, supported decision-making or ACP. When decisions were made, participants engaged in what is conceptualised here as “supportive" decision-making whereby the person with YOD and family made decisions together over a period of time within a supportive context, facilitated by a supportive process and discussions. Conclusion The findings highlight the importance of supportive decision-making when discussing and deciding options for the future and recognising the processes of planning for the future as being usually informal, rather than a formal process. The findings have implications for policy, service delivery and practice in relation to how people with YOD and their family can be better engaged to think, plan, and discuss the future. The findings fill a major gap in policies advocated by national dementia guidelines, which often neglect the unique circumstances and experiences of those with YOD. The findings also prompt re-thinking of how planning, particularly formal planning such as ACP, can be conducted to better facilitate the relationship and communication between stakeholders and enhance their engagement. The study also highlights a role for community-based support services in facilitating decision-making for the future. Future research is warranted to develop and examine programs that can target behaviour and attitudes but also take into account the preference for more informal processes for planning for the future. Further, future research should examine the experience and perception of planning for the future in three groups, whom at present are underexplored in the literature: (1) healthcare professionals, (2) people with YOD from a culturally and linguistically diverse background, and (3) people with YOD who do not have familial support to make plans for the future.