Grant boost clears way to study needs of city’s dementia carers

A Hull charity is launching a study into the needs of carers of people with dementia in the city after being awarded a £25,000 Department of Health grant.

Hull Churches Home from Hospital Service will use in-depth interviews and small focus groups to enable people who look after their partners or relatives to talk about their experience and go on record about the kind of support that would really work for them.

The aim is to contribute to the national debate on carers’ needs, develop a training package for staff and volunteers, and hold a conference on the findings in Hull.

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The project comes weeks after the Alzheimer’s Society branded as an “absolute travesty” the home support given to people with dementia and their carers, causing unnecessary admissions to hospital and care homes.

A total of 750,000 people in the UK have dementia, two-thirds of whom are living at home with support from family and sometimes social services.

Author Sir Terry Pratchett called this week called for “aggressive” research into dementia, on the same scale that there was into Aids in the 1980s.

HCHfH has run its Carers’ Support Scheme since 2004, focussing mainly on carers of people with life-limiting illness or a long-term condition.

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Manager Clare Smith said: “The problem with it is that it’s a 24/7 condition and carers end up exhausted. You can’t go out of the house – you dare not go out of the house unless someone you trust is there supporting the person who is ill.

“You end up having no life of your own. You spend it all thinking about the person you are caring for.

“I spoke to someone whose wife when she’s at home doesn’t eat or sleep and he as a consequence doesn’t sleep. He’s just exhausted all the time.”

Ms Smith said dementia was a “hidden condition” because people could have it for years before finally being diagnosed. It was not easy providing volunteers to step in and provide short-term respite because of the way people behaved in the advanced stages of the disease and their need for a familiar face.

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She said: “It seems sometimes what we offer isn’t always what they want or need. If it doesn’t work for the patient it doesn’t work for the carer.

“We suspect that something like having a relationship with a carer or a person with dementia, befriending them and supporting them while they are looking after this person could be more in tune with their needs. If they have to go away, there is familiarity.”

The study, being led by the Carers’ Support Scheme with consultant Sally-Ann Spencer-Grey, will concentrate on people who provide unpaid and informal support. Small focus groups and one-to-one interviews will be held this month, followed by a conference at the Endsleigh Centre, Beverley Road, Hull, on Friday April 15.

The £25,000 grant was one of 40 awarded by the Department of Health in England from its Carers’ Innovation Fund.

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The study comes at a time when the axe is hanging over council-run services in Hull which can be the last refuge for people with Alzheimer’s and dementia who have been turned away from private care homes when their condition becomes too difficult to cope with.

Although Nicholson House, which looks after people with Alzheimers and dementia will be spared, following a rethink by the Lib Dem administration, two other care homes, Alderson Resource Centre and Salingar House look set to close.

The charity was originally set up in 1995 to provide support through a network of volunteers for families and vulnerable adults in the city of Hull who are newly discharged from a spell in hospital.

Its projects include: Telehealth, Families Support, Carers’ Support and the Adult Service.

For further information call 01482 475265 or email [email protected].