The participation of adult service users, including older people, in developing social care

Practice example 2: Alzheimer’s Society

Characteristics of service users involved

Cross national voluntary organisation for people with dementia and carers of people with dementia in England, Wales and Northern Ireland.

How service user participation within the organisation is ensured

The Alzheimer’s Society is a membership organisation with over 25,000 members across the UK. Participation takes place at local, regional, and national levels through local branch committees, regional area forums, and nationally as elected members of the Advisory Council.

In 2000, the Society established a distinct programme to ensure the inclusion of people with dementia in all aspects of its work, especially in the contribution to policy and strategy within the Society. 

Carers and people with dementia are involved in:

What policies on service user participation has the organisation formulated?

Recent work has resulted in a fuller inclusion policy to support those groups of people with dementia and carers who may be marginalised or currently excluded within the organisation.

How are service users supported?

The Society offers sessions through its training programme to those who want to improve their lobbying and campaigning skills.

How are the effects of participation monitored, audited, and evaluated?

The services directorate is currently revising its service standards framework to ensure greater inclusion and improved measures of the impact of the Society’s work on people affected by dementia. Monitoring and evaluation are encouraged through informal, and more formal, means across the organisation using individual discussion, focus group work, stakeholder events, peer evaluation from professionals outside the Society.

What makes organisations succeed in participation?

Vision and demonstrating that the person with dementia and the carer are at the heart of all the Society does as an organisation.

Contact details

Jill Malcomson (Dementia Services Adviser, Quality Assurance Team) c/o Alzheimer’s Society, Sheffield branch, Venture House, 105 Arundel Street, Sheffield S1 2NT 01142 797228