Factors Associated With Advance Care Planning and Informal Family Discussions About Future Care
Advance care planning is a crucial element of high-quality, person-centred end-of-life care for people with dementia, with recent debates placing increasing emphasis on the importance of early informal conversations within families.
To find out how people with dementia and their families plan for future care, and the factors associated with this, we analysed data from 420 people recently diagnosed with dementia and their carers taking part in the DETERMIND study.
We focused on the first 18 months following diagnosis, when people with dementia can contribute most fully to discussions and decision-making, and examined five types of future care planning: conversations with a GP or other professional, advance statements, advance decisions, informal conversations between people with dementia and their family carers, and lasting power of attorney (LPA) for health and welfare.
Our research found that nearly a quarter (22.1%) hadn’t discussed or planned for their future care in any way at all, even informally. Informal conversations about future care between people with dementia and their carers were notably rare; only a very small proportion (17%) had 'definitely' had such a conversation, a quarter (27%) had done so only 'to some degree' and more than half (56%) had not had any kind of conversation about future care. Those with higher educational qualifications were the most likely to have these discussions.
Well over half (65%) had set up a lasting power of attorney (LPA) for health and welfare. However, most had not talked through the underlying questions that make an LPA meaningful — how they wish to be cared for, and how they would like their attorney to act on their behalf. Without these discussions, people with dementia may not be represented in the way they would wish and carers may experience decisional uncertainty, burden and distress.
We also found that people with dementia were were more likely to have spoken with a GP or other professional about future care or to have set up an LPA for health and welfare in cases where their carers had used support and information services such as self-help groups, education groups, expert relative groups, advice lines, online support, Alzheimer’s Cafés or Admiral Nurses. This may be because the support offered by these services enables carers to help their relative to plan ahead or because highly engaged carers are more likely to do both.
More formalised types of advance care planning - advance care plans and advance statements, and also discussions with a GP or other professional - tended to happen only when dementia had progressed and carers were already under pressure.
These findings suggest a need for more relational approaches to future care planning, including support for informal family conversations, high-quality carer support, timely and consistent professional involvement and additional support for those without close carers.
You can read the full article online here: https://journals.sagepub.com/doi/10.1177/14713012261463631
If you would like a printed copy of this summary or of the full article, or to receive it in a different format, please email ben.hicks@nottingham.ac.uk.