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Specialist support imperative for those affected by young onset dementia

CEO of specialist complex care provider Cornerstone Healthcare, Johann van Zyl urges greater consideration by those making decisions on care for those with young onset dementia.

Cornerstone specialist nursing home chief executive Johann van Zyl

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.

On their website the Alzheimer’s Society confirmed something my colleagues and I have suspected for a long time – there are many more people with young onset dementia before the age of 65 than was thought.

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. How can we square the circle? Most find even getting a diagnosis of their condition a trial. And once they have a diagnosis, access to support is generally poor.

The Health and Social Care budget stagnated, funding is being cut and continuing Healthcare eligibility is declining. Tens of thousands of people with primary health needs such as those diagnosed with early onset dementia have been denied due to an incomprehensible system.

Sadly, these were my exact same words I used in an opinion piece that was published in HuffPost back in October 2014.

Since then, very few new services opened to accommodate this specialist care model. However, we are changing this. This year we’ve opened Marula Lodge in Surrey. A 42-bed home with some dedicated units for people with young onset dementia.

We hope to alleviate the pain and challenges of those with this diagnosis and their relatives who have suffered through the lack of awareness of their condition and have had to battle to access appropriate care.

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

Its complex and requires a different approach to care than a normal elderly dementia nursing home. Younger people for the most part like to stay busy. Which requires purposed designed buildings, long corridors, large open spaces, gardens to walk, specially trained staff and time consuming and expensive daily activities programs.

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 providers and specialist commissioners and CHC assessors who understood the needs of people with this type of condition to work together. We all need to work towards appropriate placement of people with all types of dementia but recognise that a cookie cutter solution does not exist. Each individual has to be assessed according to their needs and presentation. Complex care providers’ fees cannot be judged on the same template as a residential or normal nursing home.

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 high staffing ratios.

The future for care in the UK lies in increased investment in the provision of specialist care for younger people with neurological conditions like early onset dementia, Huntington’s Disease, Parkinson’s Disease etc.

Steady and on-going medical advances means that the prognosis for people who suffer from a young onset neurological condition is significantly better now than 20 years ago. But the result is that more and more such people will need specialist care. The issue is not going to disappear.

For sure, specialist care in a properly resourced service is, in the short-term more costly. But we need to put things right. The long-term effects of placement breakdowns that lead to hospital admissions will be astronomical.

It is time for society and politicians to accept that partnerships between Local Authorities, the NHS and private providers are unavoidable. It is the only way we can ensure a better managed and financially secure health and social care system when we share the same aspirations.

Johann van Zyl – CEO, Cornerstone Healthcare Group