Involving people with dementia

People with dementia want to live their lives as normally as possible for as long as possible.

People need accurate information and good support to help come to terms with a diagnosis of dementia. It is important for them to have access to information that is written in a way that is easy to understand and addresses the questions and concerns that people with dementia have.

Background

A diagnosis of dementia does not mean that a person cannot make decisions or continue to take part in family or social life. Although people with dementia will inevitably lose capacity over time, they should be supported to make decisions about all aspects of their lives and to take as full a part in day-to-day activities as they wish, at all stages of the disease.

Access to the direct experiences of people with dementia is more possible now than it has been in the past. Thanks to a combination of earlier diagnosis, the availability of drug treatments and an increased acknowledgment of the need to consult people with dementia and involve them in decisions about their own life and care, there are many more opportunities for people to speak for themselves and share their perspectives.

A commitment to involving people with dementia will help to ensure that they remain at the centre of their own lives and care, and that they can continue to have a say in and influence decisions. It is important that others develop techniques and skills to enable people with dementia to be supported in having an influence in their own lives.

People with dementia are becoming increasingly involved in the work of the Alzheimer's Society. Through a national programme called 'Living with Dementia', people with dementia have been sharing their views, influencing product, service and policy development, and raising awareness at a local and national level. This enables the Society to develop the kind of information and support that people want and need. It also means that people with dementia influence the work that the Alzheimer's Society carries out on behalf of people with dementia and carers.

The Society campaigns for

The involvement of people with dementia in decisions about their own lives and care
Accurate advice and information on what it is like to have dementia
Local support services for people with dementia - for example, counselling and advocacy
Better public understanding about what it is like to live with dementia.