Method and analysis
I conducted 20 interviews with people with dementia (or similar cognitive disorder) in 2019 between February and August.
I also conducted 4 observations at a solicitor’s office in 2019 between July and September.
The analysis has been carried out between January 2020-March 2021.
- Understand how people with dementia and their informal carers approach legal decision making (focusing on wills and power of attorneys).
- Ensure law reflects real life decision making and enables people with dementia and their carers.
It was important that people with dementia and their carers, and their experiences, informed this research project, and it is their insights and stories which give the results and inform the recommendations here.
I used thematic discourse analysis, and conversation analysis to analyse my interviews and observations. By paying attention to the way people talk about the law, dementia, and capacity, I can show how people with dementia and their carers are negatively affected by capacity law in England and wales, and why.
I can make recommendations based on this research to improve capacity law in England and wales. The key findings and recommendations are listed below.
- People with dementia and their carers are subject to barriers accessing equal legal right, I surmise this is in part due to societies non-critical engagement with neuroscience and cognitive psychology. People with dementia are likely to face difficulties when living in a society which values the ‘healthy brain’.
- Within solicitors’ offices, married couples are given a privileged status. The presence of a spouse is not seen as a potential undue influence claim. The presence of other family members for support and/or information may be seen as a source of undue influence.
- People with dementia and their carers express a desire to plan their futures, but do not currently know of, or have access to, the tools to do so (i.e. wills and LPA’s are not used as or seen as sufficient).
- People with dementia and their carers do not know their legal rights, even where a legal decision has been made.
- People with dementia and their carers are supported and informed by their relationships when making legal decisions, regardless of laws definition of individual decision making.
- Solicitors are not equipped to assess capacity explicitly in their interactions, and due to rules in wills law, may equate age with loss of capacity.
- People with dementia and their carers deserve a legal system which accurately reflects their everyday decision-making processes and recognises the positive value of their relationships.
- Awareness campaigns are needed to inform all people, particularly those with dementia and their carers, about all legal tools available, their usefulness, and how they can be useful for care planning as well as financial management.
- Further work is needed to de-stigmatise dementia, this may include further research into how societal values influence understandings of dementia, and the values placed on ‘healthy brains’.
- Some people with dementia express a desire to control the point of the end of their life, work is needed to understand why this is and if using end of life care planning can help give people the desired control. People with dementia should also be further included in debates around medically assisted dying and assisted suicide both in the UK and abroad (as it is still very difficult to access this in countries where medically assisted dying and assisted suicide are legal).
- Checking understanding through asking for repetition may be one simple way for solicitors to check capacity through their conversations with clients.
- Further research is needed in the unique space of solicitors’ offices, for this to happen solicitors should be more open to the opportunities research presents, to improve and highlight best practice.
- For the values of the UN CRPD to be met, and for people with dementia and their informal carers to achieve equal legal rights, capacity law in England and wales should adopt a more relational model of law.