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The guide, Dementia: making decisions, provides practical advice and information on how to weigh-up information and options for action when faced with situations in which major decisions need to be made. This guide was informed by a study of over 100 carers with proxy decision-making powers, funded by the Nuffield Foundation.

I welcome this practical guide to decision-making for family members, partners or friends who have power of attorney or guardianship for someone with dementia.

I know from listening to carers just how challenging that caring role can be, and this will be a significant resource in helping loved ones in that key caring role.

Improving dementia services is a personal priority for me. Our national commitment from 2013 of a minimum of a year’s post-diagnostic support co-ordinated by a named person will be key to supporting people with dementia and their families and carers – including helping them as they navigate practical and legal issues and plan for the future.

Nicola Sturgeon, Deputy First Minister

Dementia gradually affects a person’s ability to absorb, understand and remember information; to weigh up options, and protect their own interests. Taking on the role of attorney or guardian is an additional challenge for carers. The study, funded by the Nuffield Foundation, aimed to identify the unmet needs of family members, partners and friends who become ‘proxy decision-makers,’ and to produce a practical guide to support them in making decisions which comply with the rules or principles set out in the incapacity law.  

Carers are frequently faced with stressful situations; for example, when the person they care for is unaware of the risks they are taking, is refusing help, or in the later stages, making decisions about end of life care. Family members also spoke of the difficulties they faced in dealing with bureaucracy, professional differences and family conflicts. They were particularly distressed when care services offered were limited and sometimes poor quality, and when banks or insurance companies were reluctant to accept their authority, despite presenting certification from the Public Guardian. The guide provides a checklist to follow in reaching key decisions and shows how the principles can be used by proxies to assert their authority. It signposts carers to futher information and where to find specialist help.

Jan Killeen, author of Dementia: making decisions and Policy Consultant at Alzheimer Scotland

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

The practical guide for carers is accompanied by a policy report which puts forward a range of recommendations for government and professionals across the UK. Carers with powers to act under incapacity laws identified the need for: local carer education courses on their duties and how to use their powers to make best interest decisions, peer support, and access to a non legal expert for advice. They also identified institutional barriers to making best interest decisions, including the lack of choice, poor quality services and professionals who did not understand capacity issues or the rights of proxies. The report calls for:

  • the provision of low cost, accessible carer education on incapacity laws and decision-making
  • the Scottish and Westminster governments to improve incapacity legislation and guidance to ensure compliance with the UN convention on the Rights of Person's with Disabilities
  • health and social work authorities to address the training needs of their staff with duties under incapacity laws, especially capacity assessment skills and application of the principles
  • targets recommendations to solicitors and financial institutions.

The report looks at initiatives world wide and identifies models of good practice for supporting lay proxies in Europe and elsewhere. It puts forward potential solutions for consideration by bodies with duties under the incapacity laws. The challenges for carers of people with dementia which have been uncovered during this project have been given little or no recognition and need to be integral to the delivery of support services.

Download report - Dementia: autonomy and decision-making - Research summary and recommendations for policy and practice

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Three women read dementia information and reports