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We Must Provide Better Support for Those Affected By Young Onset Dementia

21/10/2014 17:03 BST | Updated 21/12/2014 10:59 GMT

The Alzheimer's Society recently confirmed something my colleagues and I have suspected for a long time - there are many more people with young onset dementia than was previously reported.

The new figures show more than twice as many people in the UK have dementia before the age of 65 than was thought.

It's estimated 42,000 people have young onset dementia (also called early onset dementia) - including thousands of cases among those in their 40s, and more than 700 cases among those in their 30s.

The figures are stark enough, but the most worrying thing is that for most people with this form of dementia, there is little or no access to appropriate care and treatment.

Most find even getting a diagnosis of their condition a trial. And once they have a diagnosis, access to support services is generally poor.

At our Eagle Wood Neurological Care Centre in Peterborough we have several people with young onset dementia who have suffered through the lack of awareness of their condition and have had to battle to access appropriate care.

For example, one of our residents, Susan, first began to show symptoms of young onset dementia way back in 2004 when she was a lively 50-year-old teacher working in Ealing, London.

Her husband, Andrew, says they noticed around then that Susan was beginning to jumble up her words for no reason - and at first the couple laughed it off.

When the problems continued, and she began to have memory problems, they went to a doctor who said she was suffering from depression. Brain scans and other tests revealed no particular problems.

It wasn't until six years later, in 2010, that the couple received the devastating news that Susan had logopenic progressive aphasia, a type of dementia which mainly affects speech.

From there, Susan's condition deteriorated rapidly - much more quickly than was imagined.

Andrew, a full-time teacher of people with learning disabilities, looked after his wife at home for as long as he could, but eventually was advised that she would have to go into full-time residential care.

Now, Andrew is an intelligent and capable person. But he found the task of finding somewhere suitable for Susan to be incredibly difficult.

Without the help of any support services, he took to the internet to try to find somewhere appropriate for Susan to live.

He says one care home assured him they would be able to offer Susan the right level of one-to-one care, but things didn't turn out well. Susan, in a home largely filled with much older people, found it impossible to settle in, and ended up getting into an altercation with one of the other residents who was quite badly hurt.

That was when Andrew was advised to take a look around Eagle Wood - our specialist care centre. It was a long way from his home, but these days Susan is in an environment specially designed for people with her kind of condition, and staffed by a multi-disciplinary team trained to deal with neurological problems.

Of course, there are a number of special issues around young onset dementia - things not associated with older people with the condition.

One of the simplest is that younger people are often far more active. For instance, Susan likes to walk and stay busy. Eagle Wood has long corridors, large open spaces and an airy garden when she can walk.

But there are other things for people with young onset dementia to worry about.

They might have a young family to think about and provide for, they may well still be in a full-time job, they probably still have a mortgage to pay off. Having dementia at a young age is likely to have a massive impact of relationships with family and friends. It can be almost impossible to deal with.

So what is the way forward?

The emphasis has to be on commissioners, funders, local authorities, support services and the care providers themselves to work in partnership to help people with young onset dementia. It's vital we see the appointment of specialist commissioners who understood the needs of people with this type of condition. They need to work towards appropriate placement of people with all types of dementia.

We need funders who recognise that specialist treatment and care is the only way to deal appropriately with people with challenging behaviour and complex needs, and they need to be willing to pay the right price for that care.

And we need care home owners who are honest in their evaluation of potential residents and how able they are to provide appropriate levels of care.

Too many care homes are inappropriately managing people with neurological conditions, such as young onset dementia. Such care homes desperately lack the specialist skills to care appropriately for such people. In a bid to fill beds, they risk being complicit in such inappropriate care if they fail to recognise that they do not have such specialist skills and staff.

NHS England head Simon Stevens said he hoped to see all care homes in Britain closed by 2050. This is unrealistic.

The future for care in the UK lies in increased investment in the provision of specialist care for people with neurological conditions like young onset dementia and Alzheimer's disease.

And, finally, it is time for society to accept that partnerships between the NHS and private providers work. It is the only way we can ensure a better managed and financially secure healthcare system in the UK.

• Some names have been changed in this blog