Dementia has gone from something that was once only spoken about in hushed tones, to a health issue that our new Prime Minister has chosen to publicly speak about within hours of assuming leadership of the country.
Most recently, he also took time out to meet with actress and Alzheimer’s sufferer Dame Barbara Windsor who, along with her husband Scott, has been leading the ‘Fix Dementia Care Now’ campaign.
We all know that social care is broken. Medical treatment via the NHS is free at the point of need yet anything that has the tag “social care” is subject to a financial assessment – otherwise known as the dreaded means test.
When someone is diagnosed with dementia, the reality is that, usually, after a lifetime of working hard, paying tax and trying to put a few savings away for a rainy day, a person’s home ends up being sold and most of their savings used to fund their care.
Understandably, this is heart-breaking and something which most people find hard to accept.
You may well wonder if there could be anything worse than facing a situation like this in later life, when you should be enjoying your retirement to the full. Arguably, there is….
Dementia has no respect for age
Dementia, which is often wrongly described as “something that only affects old people” can, in fact, strike people in their prime of life – at a time when they should be looking forward to the best years of their life, rather than the last few years.
When dementia affects people under the age of 65 it is referred to as ‘working age’ dementia, ‘early onset’ dementia or ‘young onset’ dementia.
We recently helped a family who were devastated by a diagnosis of early onset dementia.
Alan and Michelle’s story* We have changed the names of those involved to protect their identities
At Steene Law we recently supported the family of a woman who was only in her early 40s when she first experienced the symptoms of dementia.
Alan* phoned us for advice and it was clear that he was at his wits end. He described how he first knew something was wrong when his wife, Michelle*, started to act strangely.
Despite this, it took a couple of years before doctors finally diagnosed that, at the age of 45, Michelle in fact had dementia.
She still had a young family to look after and her husband admitted he was terrified of leaving the children with his wife while he was at work.
He told us that his worst fears were that she might leave the gas on and cause a fire or else go out for a walk and forget who the children were, or where she lived – putting them at real risk from strangers.
You might think that Michelle, who clearly needed help to safeguard both herself and the lives of her children, would be able to call on all the specialist help she needed.
The reality is that, at the age of just 50, Michelle’s social worker offered her a placement in a nursing home where the average age of the other residents was 89.
Alan was told that if he wanted alternative care, the only way to do this would be to pay for it himself. But there was no way he could afford the specialist care home’s weekly fee of £1,400.
We were able to advise Alan that this was not the case and what social services had told him was untrue. Alan had been provided with a great deal of misinformation but, in a nutshell, one of the fundamental duties of the Care Act is an obligation of well-being.
We argued that the Local Authority could not discharge its duty by placing a 50-year-old lady, who was living at home with her children, into a nursing home where the average age was that of her own grandmother.
Steene Law, I am delighted to say, were instrumental in helping Michelle get FREE Continuing Health Care.
She is now being looked after in a specialist residential home that caters for young people with so-called ‘working age’ dementia – and the total cost of her care is being met by the NHS.
In Britain, there are 850,000 people living with dementia and this figure is rising. There are 42,000 people who are still working age, living with a diagnosis of early onset dementia.
It is very easy to glaze over statistics, but the fact is, each of these is a person; a family member with loved ones. In too many cases, these people are being given wrong information about their entitlements and are having to battle their local authorities to get the care they deserve.
If you have a loved one who you think should be entitled to have their care paid for via NHS Continuing Health Care, call the experts at Steene Law today on 0203 653 0623.
We’re available from 8am until 7pm and our FREE advice line is open 365 days a year.
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