INTEGRATED CARE XXXX


We must provide better support for those affected by young onset dementia


Johann van Zyl, chief executive officer of PJ Care, the UK’s leading provider of neurological care and treatment, has a message for commissioners, funders, local authorities, support services and care providers.


A


lzheimer’s Society research recently confirmed there are many more people


with young onset dementia than was previously reported. Twice as many people in the UK have dementia before the age of 65 than was thought. It’s now estimated 42,000 people have young onset dementia – including thousands in their 40s, and more than 700 in their 30s.


But worryingly, for most people with this form of dementia there is little access to appropriate care and treatment. Getting a diagnosis of their condition can be a trial, and 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 a lack of awareness of their condition.


One resident, Susan, began to show symptoms of young onset dementia in 2004 when she was a lively 50-year-old teacher.


Susan began to jumble up her words and to have memory problems, but doctors insisted she was suffering from depression. It wasn’t until six years later, in 2010, that she and her husband, Andrew, received the devastating news that


Susan had logopenic progressive aphasia, a type of dementia that mainly affects speech.


Susan’s condition deteriorated rapidly. Andrew, a teacher of people with learning disabilities, was advised that she should go into full-time residential care.


Andrew says he found the task of finding somewhere suitable for Susan incredibly difficult. Without the help of any support services, he took to the internet.


One home assured him they could offer Susan the right level of care, but it was largely filled with much older people and Susan found it impossible to settle in. She ended up getting into an altercation with one of the other residents, who was quite badly hurt.


Andrew was advised to look around Eagle Wood – our specialist care centre. Susan is there now, in an environment designed for people with her kind of condition, and staffed by a multi-disciplinary team trained to deal with neurological problems.


There are a number of special issues around young onset dementia. For example, younger people are often far more active. Susan likes to walk and stay busy. Eagle Wood has long corridors,


large


open spaces and an airy garden. But there are other things for people with young onset dementia to worry about. They might have a family to provide for, they may well still be in a job, or still have a mortgage. Having dementia at a young age has a massive impact


50 | national health executive Nov/Dec 14


on 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 care providers to work in partnership to help people with young onset dementia.


What is vital is the appointment of specialist commissioners who understand the needs of people with this type of condition, and who work towards appropriate placement of people with all types of dementia.


Funders must recognise that specialist care is the only way to deal appropriately with challenging behaviour and complex needs – and be willing to pay the right price for that care.


Care home owners must be honest in their evaluation of potential residents and how able they are to provide appropriate care. Too many homes are inappropriately managing people with neurological conditions because they desperately lack specialist skills. In a bid to fill beds, they risk being complicit in such inappropriate care if they fail to acknowledge their lack of specialist skills and staff.


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 it is time society accepted that partnerships between the NHS and private providers really work. It is the only way to ensure a better managed and financially secure healthcare system in the UK.


Johann van Zyl


FOR MORE INFORMATION W: www.pjcare.co.uk


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