A LEADING Hampshire nurse says younger people who develop dementia are “falling into a void” - with little or no access to long-term specialist support.

Dementia expert Fiona Chaabane, who works at the University Hospital Southampton NHS Foundation Trust, claims the lack of provision is having a “devastating” impact on families across the country.

She has spoken out after being appointed the UK’s first dedicated clinical co-ordinator for patients living with younger-onset brain disorders.

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About 5% of people with Alzheimer’s disease - the most common form of dementia - are aged under 65. The condition can affect people in their early 40s or even late 30s and is often more aggressive than dementia in the elderly.

Ms Chaabane said: “Diagnosing dementia in younger people is a challenge in itself as symptoms are often attributed initially to stress or depression.

“But once a diagnosis has been made the services these patients then require either don’t exist or are fragmented.

“We’re currently in a situation where older people’s mental health services are focused on those aged 65 and over, while adult mental health services don’t necessarily have the specific skills and experience to meet the needs and complexities of dementia in younger people.

“That leaves us with a gaping void which those with younger-onset dementia are falling into and it is devastating families nationwide.”

More than 40,000 people in the UK have been diagnosed with younger-onset dementia.

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Ms Chaabane, who is based at Southampton General Hospital, said the majority were “squeezed” into more mainstream services which may lack the expertise or experience in managing the condition.

She added: “Someone with younger-onset dementia might only be in their 40s with an active life, young children and a full-time job.

“A diagnosis will not only be unexpected but completely life-changing for the patient and their family and it’s essential they have ongoing support to help them adapt and find specialist services.”

Ms Chaabane provides a range of continuous support including home visits.

“Having a fully-trained specialist nurse in this role can be a real lifeline to patients and their families at the most difficult times,” she said.


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