Keep dementia victims part of the community

SUPPORT: Barbara Watts, left, and Charlotte Martins taking part in a training session aimed at helping villages in Clanfield, near Witney, better understand dementia

Emily Lewis, the Dementia Friendly Communities Project manager from ORCC

First published in News Witney Gazette: Photograph of the Author by

ABOUT 8,000 people are living with diagnosed dementia in Oxfordshire, up from 6,600 in 2010, and as the population continues to age, so its dementia sufferers are set to increase with an estimated 1.7million people projected to develop it in the UK by 2050.

Dementia is an umbrella term for several conditions, the most common of which is Alzheimer’s Disease.

It begins with subtle changes in how people cope with everyday problems, or remember recent events. But over a number of years it can progressively affect all aspects of life.

The sufferer at first feels they have lost their way, and then as if they have lost themselves, and will all too often feel lost to their loved ones, too.

This is deeply confusing and frightening for everyone involved and can lead to isolation and loneliness for sufferers and their carers.

In recent years, research has highlighted how ‘dementia-friendly communities’ can play a valuable part in supporting dementia sufferers and their families.

Last March, the Oxfordshire Rural Community Council (ORCC) launched The Oxfordshire Dementia Community Learning Partnership, which aims to use a network of community ‘learning groups’ to improve public awareness and understanding of dementia and ultimately to bring people with dementia, and their families, back into the community from which they may have retreated.

Also involving The Guideposts Trust, Oxfordshire County Council’s Skills and Learning Service and Oxfordshire Skills Escalator Centre, the £157,000 scheme is being funded by the NHS Dementia Challenge Fund and the county council.

It works by providing communities with free training and guidance about how to best support and help people with dementia.

The intention is that those people then take the information back to their communities, sharing it with other residents and organisations, and identifying people they could help.

Emily Lewis, pictured, the Dementia Friendly Communities Project manager from ORCC, said many communities have embraced the scheme.

She said: “Dementia is recognised as being a growing problem and our communities are full of people who want to find out more and help those who are being affected. We have been really pleased by how many people have come forward to get involved.

“Many of us can expect to be affected by dementia, either through personal experience, or through its impact on the lives of family or friends – it is a growing problem and sadly there is still a stigma attached to it.

“Unless you have been affected by dementia, you may know very little about it.

“And some people, especially the elderly and those living in rural isolation, may be living with their own dementia or caring for someone with dementia with little support.”

ORCC, a charity which works to improve the lives of people in rural communities, ran a pilot of the dementia scheme last year, focusing on seven rural locations including Chinnor, Enstone and Cumnor.

In this year’s much larger scheme, the organisation is spreading its remit across 60 towns and villages.

Mrs Lewis said: “People with an interest in finding out more about dementia are encouraged to become active members of a Community Learning Group and to attend learning sessions, which include information about dementia delivered by specialist dementia care trainers.”

Attendees join the first session and sign up for two more, taking place in group discussions and role-play to widen their understanding of the issues. The final group session includes guidance on producing a basic action plan to make their community or workplace more dementia-friendly.

On Monday, residents of Clanfield, near Witney, attended a joined Dementia Partnership learning group at the village’s Clanfield Institute.

The learning groups are being hosted by Catharine Arakelian, whose NewDementiaCare company also offers dementia care training to nursing and care homes.

She said: “I think the aim of this programme is about restoring people with dementia back to their community.

“There is an awful lot of expertise on dementia in the county, both from professionals and also those whose loved ones have dementia, and people are coming together in these groups, sharing that knowledge and then taking it away to their communities.

“We talk about how the brain works when there is memory loss and how we can make simple changes to make life easier for people affected by it.”

Charlotte Martins, from Clanfield, who lost her mother to Alzheimer’s last year, attended the group.

She said: “I thought the session was excellent. From the visual description of dementia and how it affects people, to the very sensitive position the instructor took and the suggestions raised about how we as a community could work together to improve the lives of the elderly and those with dementia.”

Emily Lewis said: “When the partnership comes to an end in March, we hope to be in a situation where members of 60 communities will be actively disseminating what they have learned about dementia to the people around them.

“But it won’t just end there. They will also be directed to continued support from other dementia projects being run by the Guideposts Trust nationally.”

s For more on the Dementia Learning Partnership and training groups coming up in your area, call ORCC on 01865 883488 or visit oxonrcc.org.uk KNOCKING DOWN NEGATIVITY THE Oxfordshire Dementia Awareness Campaign is also organising a series of free events across the county in the coming months to improve negative perceptions of dementia.

The events will include advice on identifying dementia, expert speakers, exercise classes by AGE UK and demonstrations on music therapy.

The next event takes place at Headington Girls School in Oxford on February 21, between 1pm and 4pm.

Information about the county’s dementia services and support is also available through the Dementia Web Oxfordshire website – dementiaweboxfordshire.org.uk And a 24-hour helpline can be reached at 0845 1204048.

Case Study

Personal experience led to a wider role

LINDA Johnston, 47, decided to join one of the Dementia Learning programme’s Community Learning Groups having seen her own mother Gwen Coffee, 77, pictured with her, struggle with dementia.

Mrs Johnston, from Clanfield, said: “My mum was diagnosed in 2009 and eventually she moved from her home in Norfolk to live with us in Berkshire and I gave up my job in HR to look after her full-time.”

Witney Gazette:

She continued: “Every person’s dementia and its effects on them are different. But it is never easy.

“And while there were neighbours who would drop in on mum when she started to get poorly, there were others who stopped when she started to repeat herself. I suppose it becomes awkward – some people don’t know how to react to a person with dementia and I suppose it can get easier just not to call in.

“That’s why I was so impressed by what the Community Dementia programme is trying to achieve.”

She added: “We have only been in Clanfield for about eight months, but I can already see there is a network of places, people and groups, such as the WI and the Clanfield Institute, which are there for people, and I came away from the group sure I am going to take this forward.

“Dementia is not an easy subject to broach. But even if you were to recognise signs in someone, or a need in a family, there is a chance to offer your help and to signpost them to others who can help too.

“My mother is now in Berkshire in excellent full-time care, but I hope to do what I can to help others.”

The frightening cost of dementia care

THE cost of caring for people with dementia is £23bn a year but this is set to rise to £27bn by 2018.

One in three people over 65 will die with dementia.

In December last year, Prime Minister and Witney MP David Cameron, left, pledged to double dementia research funding from £66m in 2015 to £122m by 2026.

Oxford’s dementia research group, Oxford Dementia and Ageing Research, hopes this could result in 20 specialist jobs and a dedicated MRI scanner to identify sufferers.

Oxford is one of six major dementia research centres along with three in London, one in Cambridge and another in Newcastle.

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