EMBARGOED TILL WEDNESDAY 29 MARCH
GROUND-BREAKING PROJECT FUNDED BY NHS SEES PEOPLE WITH DEMENTIA TAKING SERVICES INTO THEIR OWN HANDS
New project reverses traditional approach to service provision for people with Dementia
The Dementia Peer Support Service, a ground-breaking project run by and for people with dementia, with the support of professional staff, will be launched at the Brent Civic Centre in Wembley on Wednesday 29 March. Dementia affects over 850,000 people in the UK – set to rise to over 1 million by 2021 – and is the leading cause of death in England and Wales, costing the UK £26 billion a year.
In Brent alone, over £10 million was spent on nursing homes and residential care homes specialising in dementia in 2014. The following year, £270,407 went on extra care (supported living) housing specialising in dementia. Recognising that The Dementia Peer Support Service is both practical and cost-effective, the Brent Clinical Commissioning Group has funded a pilot project costing £90,000 at Ashford Place in Cricklewood for 18 months until January 2018. They are encouraging Brent residents and their carers to join.
Two years in-the-making and supported largely by volunteers, the pilot project was spearheaded by Community Action on Dementia (CAD) Brent, a social movement which aims to make the London Borough of Brent dementia-friendly. Charities such as Irish in Britain and Ashford Place, together with statutory and community agencies, faith groups and local businesses also backed the scheme.
It’s a shock to people when they are told they have Dementia. A lot of people don’t talk about it and it gets worse because it’s secret. It’s like you’re having an affair that you don’t want people to know about. It’s not until you admit it to yourself that you can start to come to terms with it. Coming to the group and hearing other people talk helps people to open up. It also helps the carers who are trying to understand how to cope with their loved ones. The main benefit is for people to come together and mix. I think it’s a very good thing.
Dianne Campbell, a Brent resident diagnosed with dementia at the age of 47, is one of the driving forces behind the campaign. Seeing a gap in provision, Dianne was keen to help develop a service in her local borough. Her persistence led to a borough-wide conversation about the needs of locals living with the condition. In the process, 80 Brent residents with dementia were interviewed, along with their carers. The findings were published last summer in a report entitled Living with Dementia in Today’s Community
The report found there were nearly 2,000 people in Brent living with dementia, demonstrating the need and potential for a service in which people living with dementia could help each other while retaining their self-esteem and sense of identity. It was also clear that people lead happier and healthier lives when they have the resources that work for them.
After I was diagnosed, I was told I had to stop working and I felt all over the place. There was no structure available and no way to meet other people who had been diagnosed. But at The Dementia Peer Support Service there’s an understanding that it’s difficult and you have to be gentle with each other and I’m beginning to really feel a part of things and enjoy myself.
While traditionally most programmes supporting people with dementia are run by medical professionals, The Dementia Peer Support Service encourages the people living with the condition – the peers – to design and deliver a range of activities for everyone. Meeting fortnightly, these activities include expeditions to museums and galleries, art classes and listening to invited speakers. Hosting activities away from a clinical setting provides a relaxed environment where people can learn how to adapt to life with dementia together and a buddy system encourages mutual support and helps build confidence.
The Dementia Peer Support Service is the first community-based scheme of its kind to be funded by the NHS. The service currently has 18 members and plans to increase that number to 70 by January 2018. Brent residents can be referred by GPs and other primary care staff, places of worship, social services and the voluntary sector – they can even approach the group direct.
Danny Maher, CEO of Ashford Place said, “Since beginning this project, people with dementia have said how relieved they are to be encouraged to lead on how they want to manage their condition. They feel more in control and really value the opportunity to decide what they want to do rather than just ‘give up’ at home. We also use very different language – where medical speak is more focussed on illness, deterioration, drugs, symptoms, risk adverse etc., our language is about hope, confidence and self-determination."
Clementine Femiola, the Project Lead, has been employed to oversee the project, working alongside other agencies, the peers and the peer supporters. Peer supporters tend to be more confident, often in an earlier phase of dementia, and might have a skill or hobby to offer a group session. Peer supporters also raise positive awareness of dementia in the community by sharing their experiences of diagnosis and what has helped them on a day-to-day basis.
For more information about the project, please contact Clementine on: Tel: 020 8208 8590 or Mob: 07757 625799 or email: email@example.com