Your Life: Younger Alzheimer's Sufferers Being Failed by the System; HEALTH: Reporter CATHERINE VONLEDEBUR Finds out How Services for Dementia Patients under 65, and Their Carers, Is Desperately Lacking in the City

Coventry Evening Telegraph (England), May 30, 2008 | Go to article overview

Your Life: Younger Alzheimer's Sufferers Being Failed by the System; HEALTH: Reporter CATHERINE VONLEDEBUR Finds out How Services for Dementia Patients under 65, and Their Carers, Is Desperately Lacking in the City


Byline: CATHERINE VONLEDEBUR

AHUGE gap in services for younger Alzheimer's sufferers has been identified by carers and service users in Coventry.

Coventry's Young Onset Dementia Focus Group wants to bring about a change in how health and local authorities support the 90 patients under 65 in the city, and their carers.

Younger people with dementia, they say, are falling between two services - adult and older people's services.

Chair of the group Ian Darnell, aged 58, of Baginton Road, Styvechale, Coventry, who cares for his wife Carol aged 62, who has Alzheimer's, said: "I find it extremely worrying that for this group there is no local, appropriate nursing or respite provision in Coventry. Only the Alzheimer's Society provide limited day care in the city - one day a week and that is for eight people.

"Those sufferers under 65 have a completely different set of needs to those who are elderly and yet that 'older people's provision' is what we are offered.

"If my wife Carol was a Class A drug user or an alcoholic she could access more resources. That's what is funded."

Plans initiated several years ago to open a six-bed specialist ward for early onset dementia patients at the Caludon Centre had to be scrapped last year due to lack of funding from Coventry Teaching Primary Care Trust (PCT).

Many young Alzheimer's sufferers, like Bill Wilson, aged 58, of Coundon, Coventry, are in their early 50s when they develop dementia. He sees the loss of this specialist provision as a backwards step.

Bill, a member of the focus group and Coventry's Alzheimer's Society, said: "You would not want to see me on a bad day. What happens when I throw a wobbler? There is nowhere for me to go.

This unit, the Spencer Ward was specially created for younger people with dementia."

Ian added: "Coventry and Warwickshire Partnership Trust never had any money to open it. It lay vacant."

Coventry has no specialist in-patient or longterm care for younger dementia patients and is spending thousands of pounds per week sending people outside of the city for respite and longterm care.

Carers are having to travel miles to see their loved one.

Retired police inspector Ian was asked to attend a recent Adult Mental Health and Wellbeing strategy consultation for Coventry as a carer - and was shocked that "there was no mention of dementia".

He said: "If dementia care costs Britain pounds 17billion a year, more than cancer, heart disease and stroke combined, why is it that we appear not to have a pathway of supported care which is transparent to carers and users? …

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