Better information, advice and support needed for those making decisions on behalf of people with dementia

People appointed as guardians and attorneys for loved ones with dementia are not given sufficient information, advice and support, according to new research from Alzheimer Scotland and funded by the Foundation.

These people, referred to in legal terms as ‘lay proxies’, are required to comply with principles and duties set out in Codes of Practice when making decisions on behalf of someone with dementia. However, there is no statutory duty for lay proxies to receive training, and researchers found that few of them were aware of the Codes of Practice.

About the research project

The research and development project was led by Jan Killeen from Alzheimer Scotland and carried out in 2009-2012. Researchers ran small group discussions and interviews with 100 lay proxies, and multi-disciplinary roundtable discussions with over 100 professionals. They also undertook a worldwide literature search. Lay proxies and professionals in Scotland, England, The Netherlands and Germany took part.

Recommendations

In a report detailing the findings, Alzheimer Scotland makes a series of recommendations:

• A national programme of easily accessible, low cost education programmes should be developed and implemented to ensure lay proxies are well informed and empowered to apply best practice in decision-making
• Local authorities and health boards should revise and update knowledge and skills of health and social workers on a) incapacity and related legislation and b) the central role of welfare proxies in capacity assessment, supported decision-making and care planning
• Newly appointed proxies should receive a copy of the appropriate code of practice and information about relevant guides. The cost of this would be included in the registration fee
• The government should review provisions and improve guidance to better reflect the United Nations Convention on the Rights of Persons with Disabilities
• Financial institutions should ensure that their procedures recognise the authority of financial attorneys and guardians/deputies.

The research summary and recommendations, Dementia: autonomy and decision-making – putting principles into practice is available to download as a PDF.

Practical guide

Hard copies are available free on request from Alzheimer Scotland by calling 0800 800 3000. Or in England and Wales, from the Alzheimer Society UK on 0808 808 3000.