Dementia: Autonomy and decision-making

The aim of this project was to identify and meet the support needs of lay proxies (appointed under incapacity laws); who are responsible for making decisions and acting on behalf of people with dementia who are no longer able to do so for themselves. In law, proxies must act in accordance with a set of principles which reflect the rights of people who lack capacity, yet they are given very little information, support and advice to do so.

Launch of Alzheimer Scotland guide to decision-making

The project used qualitative research methods – seminars, focus groups and interviews, to look in more depth at the issues and solutions. It also looked at best practice internationally.


The study has informed a new guide, Dementia: making decisions, which provides practical advice and information on decision-making for people who have been appointed to make decisions on behalf of someone with dementia, either as an attorney, guardian (Scotland) or deputy (England and Wales).

Jan Killeen has made a series of recommendations for policy and practice in light of her research, and these are published in Dementia: autonomy and decision-making. Putting principles into Practice (PDF).

Project details



Ms Jan Killeen, Alzheimer Scotland

Grant amount and start date:


1 September 2009