Abstract

Discussing and planning in advance for future potential long term care needs have been enabled by the advent of the Mental Capacity Act (MCA) in England and Wales. However, as yet, research indicates the reluctance of people with suspected or early dementia and their family carers to engage in these discussions.

We explored the implementation of the MCA through qualitative longitudinal methodology, which followed up the possible use of the MCA and the views of a sample of people with dementia and carers. Alongside focusing on everyday decision-making, we asked them about their future – any discussions they had held, options they might have considered, and if any plans or wishes had been set out formally. We interviewed 12 people with dementia and their 12 carers; 9 of these were spouse carers, between 3-4 times each over the course of 12–18 months.

Thematic analysis identified consistent themes in transcripts. Our findings related to carers indicated that although the future was a matter of concern for carers, few had any formal plans in place. Most participants had drawn up wills and some had set up funeral plans. Most carers said they would feel uncomfortable making decisions about long-term care for their relative with dementia without their relative’s involvement. Spousal carers suggested that they would find this easier than adult children who did not live with their parent with dementia. Many carers were unaware where to turn for information, and cited the importance of receiving personalised information and advice, suited to their individual situation, rather than general leaflets to read that signposted them to other sources. There was also general concern that plans and decisions might change and most were confused about formal plans that they thought bound them to provisions that they may later reconsider and regret. Most were also confident that their plans would be respected and adhered to in care settings.

We draw on these and other findings to raise implications for practice. Greater awareness of legal provisions for planning, and strategies through which carers can approach these provisions, are needed. Furthermore, personalised information covering sensitive issues, such as planning for long-term care, may be beneficial as it might encourage planning, instil confidence in the system, and ensure the preservation of autonomy and dignity of person with dementia as far as possible even after their decision making capacity may have deteriorated.

Slides