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Dementia: autonomy and decision-making. Putting principles into practice. Research summary and recommendations for policy and practice

This project drew on the experiences of over 100 carers (family members, partners, friends, volunteers) who have taken on the role of proxy decision-maker for someone with dementia. I wish to thank them all for their invaluable contributions to informing both the practical guide to making decisions and this report. This report presents the main findings and recommendations from a research project to identify and meet the support needs of lay proxies (that is family members, partners or friends appointed as guardians and attorneys under the Adults with Incapacity (Scotland) Act 2000 or as deputies and attorneys under the Mental Capacity Act 2005, England and Wales). The project focused on those with the responsibility for making decisions and acting on behalf of people with dementia who are no longer able to do so for themselves. The research and development project was led by Jan Killeen from Alzheimer Scotland between November 2009 – March 2012. The project had four main objectives: to identify issues facing lay proxies; to identity what they felt would help them as decision-makers for the person with dementia; to identify models of good practice in meeting the needs of lay proxies; to inform and influence policy and practice to ensure lay proxies are empowered to make best interest decisions. The study included lay proxies and professionals in Scotland, England, The Netherlands and Germany. It comprised: small group discussions and interviews with 100 lay proxies; multi-disciplinary roundtable discussions with over 100 professionals; and a worldwide literature search.

Jan Killeen
Alzheimer Scotland