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Families ‘struggle to provide dementia care’

From the Times 25 January 2011:

Thousands of families struggle daily to find adequate paid care for relatives with dementia so that they can carry on living at home, a study has shown.

Research by the Alzheimer’s Society found that half were subjected to sub-standard care, which included not being fed properly, being left in bed for hours, left in soiled incontinence pads, or unwashed.

One in ten ended up in hospital for an avoidable reason, such as a fall or dehydration, at a huge cost to taxpayers. In addition 50,000 dementia sufferers a year are admitted to care homes earlier than necessary at a cost to the public purse of £ 70 million.

Of the 750,000 people suffering from dementia in Britain, two thirds are living in their own homes with the support of paid carers and family.

Keeping older people in their own homes for as long as possible is the cornerstone of government policy but it appears that the home care workforce does not measure up to the task.

The study found that nine out of ten paid carers admit this, saying they are not able to provide the care that dementia patients require, largely because they are given no training on how to deal with the mental illness.

Most care is provided by private companies that are under pressure to keep staff costs as low as possible. However local authorities are required to assess the needs of all those with dementia and help to put a care package in place, regardless of whether the family qualifies for financial help.

The Alzheimer’s society said it was a travesty that so many people with dementia had to battle on with inadequate help.

The findings came from a survey of 1500 people with dementia or their families, and a thousand home care workers.

The society said that in the current financial environment the situation would get worse. It has called on health and social care commissioners to think in the longer term and invest in proper dementia services and training to keep more people out of hospital and residential care homes, saving the NHS and local authorities considerable sums.

Paul Burstow, the health Minister, said that too many people with dementia and their carers were being let down.

“What needs to be done to put things right is not rocket science. It requires compassion, common senses and a determination to treat people as people, not boxes to to tick” he said. “this is not about spending more, it is about spending better”

Our comment: While the aim of enabling older people to stay at home longer is a laudable one, we think this is extremely challenging for people with dementia, particularly where someone is living on their own. Caring for someone with anything beyond early stage dementia is a 24-hour 7-day a week occupation. For many carers this is simply too much particularly as they may be old and frail themselves. Providing professional 24 by 7 care is simply not affordable, either for private individuals or for us the tax payer – even more so in these strained financial times. And staff supervision is a real challenge when carers visit people at home unsupervised. We know from experience how the right physical and social environment can make a profound difference to the wellbeing of people with dementia. Providing such an environment is expensive and requires considerable skill, and it is simply not realistic to provide such an environment at home. Our experience is that, on the whole it is not so that people with dementia go into residential care homes too early – quite the contrary we find that many people take the step too late, typically after a fall or hospital admission. We think it high time that we put aside old ‘home is better’ dogmas and understand that good dementia care homes not only provide a great environment for people with dementia, they are also much more cost-effective than intensive professional care at home. We think the Alzheimer’s society should think again!