Half of dementia sufferers living in the community are not receiving sufficient care, leading to premature hospital or residential care admissions, an Alzheimer’s Society survey has found.
The poll of 2,000 carers, dementia patients and home care workers showed many service users were being left bedridden, unclean and malnourished.
Half of carers and dementia sufferers said the level of home care they were receiving for themselves or their loved-ones was insufficient. One in 10 carers said that poor care had led to early hospital admission or a move to a residential care home for the person they cared for.
Just 10% of care staff believed the care and support people with dementia received in their own homes met all of their needs, the survey found.
“It is an absolute travesty that so many people with dementia are being forced to struggle without the care and support they need,” said Jeremy Hughes, chief executive of Alzheimer’s Society. “The consequences of this represent an unacceptable human and financial cost.”
The charity called for comprehensive training for home care staff in dementia.
The United Kingdom Homecare Association (UKHCA) said that the amount of training provided was dictated by the prices that councils paid providers for care. However, UKHCA chief executive Bridget Warr pledged to work closely with the Alzheimer’s Society to improve care standards.
The Alzheimer’s Society warned councils against raising eligibility thresholds, saying this would further restrict dementia sufferers’ access to care. It also said services should be commissioned to meet users’ needs, not on the basis of time slots, echoing longstanding criticisms of home care commissioning.
Responding to the report, Association of Directors of Adult Social Services president Richard Jones said councils were two years into implementing the five-year national dementia strategy and “there is bound to be room for improvements”.
He said that Adass accepted the need for improved training but said the Alzheimer’s Society report did identify that some people were happy with the care they were receiving.
Lynne Chambers’ mother is now in a care home but this could have been avoided if her care at home had been better, says Chambers, a former chief executive of a mental health trust.
“The final admission to hospital, which eventually resulted in her going into a care home, was because she had a deep vein thrombosis in her leg and it filled up with quite a lot of blood. Over two days there had been eight visits and not one of the care staff noticed,” she said.
Her mother is fiercely independent and often told carers she had taken her medicine or had enough to drink when she hadn’t. Carers rarely challenged this despite knowing she had dementia. This resulted in several admissions to hospital with dehydration, and one for an accidental overdose.
Chambers believes no one had the training or knowledge to care for her mother’s dementia. “There was a lack of continuity so no one person had an overview or got to know my mother very well. It meant that no one picked up on the signs of distress,” she adds.
As well as costly hospital admissions, Chambers had to spend four nights a week living with her mother to oversee her care.
“There needs to be some recognition that there is an imbalance between the reality of someone’s mental ability and their perception. I think care workers need to be able to recognise the difference,” she says.
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