BJF Dementia Advocacy, supporting people, 50+, living with Dementia to have their voices heard.

The Dementia Advocacy Project provides free 1:1 independent advocacy to older people living in the North Staffordshire and Stoke on Trent area who have been diagnosed with dementia, or who are undergoing assessment for memory issues.

Since 1998, we have supported people to have their voices and wishes heard, and their rights upheld. We have supported thousands of people living with dementia, with the benefits of advocacy support cascading to many others involved in their lives e.g. family and friends.

Advocacy means supporting a person to have their voice heard by others; taking their side and helping them to get their point across. It involves supporting people to participate in the processes affecting their life. Advocacy is person-centred, focusing on the wishes of the person themselves; it does not take a ‘best interests’ approach or support the views of other people involved. Advocates will never make decisions on behalf of a person without checking what they want to happen; or try to influence decisions/persuade them to take a particular course of action.

The issues that advocates can help with are varied and often complex. For example, concerns involving accommodation, challenging service providers, exploring family dynamics, and planning for the future, where Dementia Advocates can:

  • Give a person time and listen to what they are saying.
  • Find out information for them.
  • Explore options with clients to enable them to make informed choices.
  • Offer support to ensure rights are understood and upheld.
  • Help clients to speak to other people or organisations.
  • Help them to have control over their life.

During 2023 our service has grown, and to meet demand, we have expanded the Team to three trained advocates. The success of the project is due to the skills, commitment and diligence of the staff Team who remain passionate about advocacy; always prepared to go the extra mile for the clients they support, as Clare describes:

“I’ve found my first year working as an advocate for people living with dementia an incredibly rewarding experience.  I have been surprised by how quite often, what service providers or family members deemed as being the ‘right’ support for a client, was the opposite of what the client actually wanted. Every client’s experience of living with dementia has been different and their perspective unique in how they perceive the world around them. Working in a person-centred way has really helped me to ensure that their voice has been heard and that crucial decisions about their health and social care have been made with a clients’ involvement, even when they have been assessed as lacking capacity.” – Clare, Dementia Advocate

Dementia Advocacy Peer Support

Our clients can also join our Dementia Advocacy Peer Support (DAPS) group, facilitated by Team members. This group meets monthly at the BJF, offering a warm, comfortable, safe space where people living with dementia can support each other, without their carers or family members, and talk freely about the things on their minds.

“I’ve had such a lot of support from the people here. The family don’t accept that I have dementia, they say it’s just my age and that makes it very hard for me to talk to them. I know the people here understand.” – DAPS member

As well as being a helpful, supportive environment for members, the group provides valuable insights into the life experiences of people with dementia:

“It has been a privilege to support the members of the DAPS Group. It has given me valuable insight into the experiences of living with dementia and I continue to learn from the group. I have witnessed how people coming together to support each other and share their experiences, empowers and enriches their lives. I have learned that sometimes people living with dementia can feel isolated and stigmatised and how powerful it can be for people to feel heard and understood by the group members…who not only share their experiences of living with a dementia condition but the ups and downs of everyday life.  I always enjoy the wisdom and fun that people bring to the group sessions. For me, the group exemplifies that people living with dementia can live meaningful, positive and full lives.” – Jackie, Dementia Advocate

If you know someone who would benefit from our service contact the team on 01782 844036 or visit https://www.bjf.org.uk/dementia-advocacy/ for more information.

Author: Amanda Carter, Dementia Advocacy Project Manager


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