‘A Stronger Voice for People with Dementia’ by the Dementia Advocacy Network (DAN)

What is advocacy?

The Advocacy Charter (produced by Action for Advocacy) defines advocacy as “taking action to help people say what they want, secure their rights, represent their interests and obtain services they need.  Advocates and advocacy schemes work in partnership with the people they support and take their side.  Advocacy promotes social inclusion, equality and social justice.”

Advocates are independent from other services and as such are able to focus on giving people a voice and empowering people in a unique way.

There is some statutory provision of advocacy (Independent Mental Health Advocates, Independent Mental Capacity Advocates and NHS Complaints Advocacy).  Statutory advocacy has the benefit of being protected by law (e.g. the Mental Health Act and the Mental Capacity Act) but these types of advocacy are only available in specific situations.  There is therefore a need for generic advocacy services that are able to work with a wider range of people on the issues with which they need support.

Dementia advocacy

The Dementia Advocacy Network (DAN) believes that every person with dementia should have access to a skilled and independent advocate who understands dementia and is equipped to advocate effectively.

People with dementia are among some of the most vulnerable members of our society.  With an illness that brings diminishing ability to cope independently, progressive changes in cognitive ability, fluctuating mental capacity and increasing difficulties in communication they are vulnerable to discrimination and abuse.  Increasing demand on services, austerity measures and reduced resources mean that sometimes the person with dementia has little involvement in decisions about their treatment and care, their rights disregarded, their voice not listened to or overpowered by others.

Advocates who work with people with dementia are able to ensure that their voice is heard and their rights protected.  Advocates can also work in a non-instructed capacity with people who are unable to tell the advocate what they want, which can be particularly valuable for some people with dementia.  DAN’s publication “Taking their side; fighting their corner” includes case studies that demonstrate the value of advocacy for sixteen different people with dementia.

Advocates can benefit other services by being able to spend time specifically focusing on finding out what the person with dementia wants and communicating this to service providers.  This means that service providers can have the assurance that their service is tailored to that particular service user, taking their individual views and preferences into account.

‘Mind the Gap’ – Advocacy provision in London

DAN has produced a report to promote the need for independent advocacy for people with dementia and highlight areas in London where there are gaps.  The findings of the report will be presented and discussed at DAN’s conference, ‘A Stronger Voice for People with Dementia’ which is being held in London on 18 September.  Anyone who is interested in attending can book a place here.

For further information please contact Jan Kendall, DAN Manager, or Heather Tyas, National Project Support, Dementia Advocacy Network (DAN): Tel: 020 8968 2614. Email: dan@advocacyplus.org.uk. Website: www.advocacyplus.org.uk/dan

Leave a Reply