Dementia Champions

by Glynis Luke

I recently attended the Dyfed-Powys Police Confidence & Equality Group which met to raise awareness of dementia. I was there not only representing the PAVO Mental Health team but also because of my interest in learning more about dementia. The meeting was also attended by a wide range of representatives which included Powys County Council Equalities, Disability Powys, Powys Teaching Health Board, Mid & West Wales Fire Service, Youth Services, neighbourhood Policing Teams from each of the areas of Powys and Police Chaplaincy.

Multi agency Dementia Awareness Day

For many people with dementia the battle is not just about getting diagnosed and support from the health and social care system, but about everyday things we all take for granted. The majority of those living with dementia live within their own community and are cared for by their families. I have a particular interest in all that is dementia as a close family member suffers with this progressive atrocity, so for me it was interesting and captivating to listen and learn from the three guest speakers.

The meeting was chaired by Inspector Brian Jones who introduced the three speakers. The first was Rhiannon Davies, an Alzheimer’s Society volunteer and chair of Brecon & Hay Dementia Support which represents a growing group of people who are working towards developing Hay and Brecon to become a dementia Friendship Community. This would mean a community that demonstrates a high level of public awareness around dementia.
Rhiannon asked the question: What are the issues and why do we need this?

For people with dementia the problem is not just about diagnosis and help from The Alzheimer’s Society. It is about the everyday needs that we all take for granted, for example, spending time with family and friends or following hobbies. It means people can have their confidence maintained allowing them to live in their community and be able to manage their everyday lives. In Powys there are currently 2000 people diagnosed with dementia; with an aging population this will rise to 3000 within the next eight years. It is a growing issue.

The majority of people live within the community and are cared for by their families, with many of those families reluctant to share what they are facing because of the stigma. It became very clear that just going to the bank or visiting the shops can be a battle. It can lead to loneliness and is compounded by the geography that is Powys. Rhiannon spoke with passion when she told us that these people genuinely need our help, that these people deserve to be valued, respected and very importantly we can all learn from each other.

There have been several initiatives that have started up recently such as The Hay Day project and the Dementia Supportive Community in Brecon which Laura wrote about here. but there is a lot more that needs to be done. A grass roots project is needed within communities with the voluntary and public sector organisations all working together with shared aims to enable people with dementia and their carers to live well. This initiative would raise the profile of dementia e.g.training in statutory and voluntary organisations appropriate to the needs of the people working in services.

Rhiannon spoke about Dementia friends and champions, a pilot scheme that would be initiated across Wales. There was an opportunity to sign up to this initiative after the meeting with the aim of working together to raise dementia awareness as Dementia Champions. It was hoped that the way forward would be good housing, good transport, good facilities and social inclusion.

The second guest speaker, Cherry Jones, had been a carer for her mother until she had been moved into a residential home. Cherry spoke about her experience of dementia whilst supporting and caring for her mother. She shared her experience of the impact of dementia, through the media of her storybook, on herself, on her family and friends. This was very emotive, powerful and informative; from the issues of inappropriate chats between her mother and young people, her mother’s vulnerability issues from visiting adhoc door to door salesman, driving hazards, losing possessions ……a minefield of confusion. The concerns for her mother were very real:

"What will happen to me?  I want to be an ordinary woman."

Someone in the audience responded: “They are robbed of this part of their life so it is up to us to help them to live as well and as fully as possible …….for as long as possible”.

The third guest speaker was Jean Nowell, an Alzheimer’s Society support worker from the Brecon area. She was keen to work to promote the Dementia Friendship Society. Dementia affects people in different ways and essentially leads to cognitive impairment and she explained the various diseases that came under the umbrella of dementia. The Alzheimer’s Society currently has a five year strategy “delivering on dementia” to provide maximum benefit to people through national and local services. This links in with dementia support in the community.

There is a national helpline: 0845 300 0336, a monthly magazine here and an online community forum, details here.

• A series of memory walks have been taking place, all raising money to provide vital support to people living with dementia and to help research a cure for the future. 
• A befriending service has been introduced. 
• Information and practical help initiative (e.g. lasting Power of Attorney, respite options, relevant agencies to contact).
• Singing for the brain (structured singing groups that have a positive impact for those with dementia). 
• Dementia Cafes in a supportive environment, keeping all active and involved.
• Jean spoke about the fears, anxieties and effects on the carer, the 24/7 toll, you can read more in her presentation here. 

A question and answer session ensued and it was clear that there are a number of occasions where the police are called upon to assist those living with dementia and their family members such as when a person is reported missing and there is concern for their safety. I certainly felt that having an increased awareness would mean that a more integrated approach could be taken to support those requiring assistance and which would ultimately enhance the confidence that members of communities across Powys have in the partnership work.

It was very encouraging to see the thirty four attendees all signed up to be ‘Dementia Champions’ and encouraging to learn that this is only the second group to have done so in Wales. All of us will now be doing something different to support those living with dementia.

The ultimate goal: a world without dementia

Featured in the photo at the top of the post:

L to R: back row: Inspector Brian Jones, Partnership Inspector & Chair of Confidence & Equality Group, Neil Evans – Community Safety Manager Mid & West Wales Fire Service, Police Constable Paul Dyer – Llandrindod Wells Neighbourhood Policing Team, Police Sergeant Craig Morgan - Brecknockshire Neighbourhood Policing Team, Harold Proctor – Performance Mental Health Manager - Powys teaching Health Board (Dementia Lead), Leigh Spicer - Dyfed Powys Police Chaplain.

middle row: Rob Beardall – Powys County Council Equality Officer, Sheelagh Hughes – Disability Powys, Cherry Jones - Dementia Carer, Rhiannon Davies - Alzheimers Society Volunteer & Chair of Brecon & Hay Dementia Support Community Steering group, Jean Nowell - Alzheimer’s Society Dementia Support Worker, Becky Jones – Community Psychiatric Nurse, Older Adults, Powys Teaching Health Board, Police Community Support Officer  Graham Jennings – Newtown Neighbourhood Policing Team.

front rows: Sue Cox – Powys Youth Services, Sharon Sharmon – Service Manager Adult Mental Health, Powys teaching Health Board, Jan Rogers - Ponthafren Association (member and trustee), PCSO Sally-Ann Neville – Welshpool Neighbourhood Policing Team.