A nurse leader from Hampshire says that young people who develop dementia are "falling on deaf ears" – with little or no access to specialist long-term support.
The dementia expert Fiona Chaabane, who works at the Southampton University Hospital NHS Foundation Trust, claims that the lack of performance is having a "devastating" impact on families across the country.
She spoke after being named the UK's first dedicated clinical coordinator for patients living with brain disorders of juvenile onset.
About 5% of people with Alzheimer's disease – the most common form of dementia – are under the age of 65. The condition can affect people aged 40 or even 30 and is often more aggressive than dementia in the elderly.
Ms. Chaabane said: "Diagnosis of dementia in younger people is a challenge in itself since symptoms are often initially attributed to stress or depression.
"But once a diagnosis has been made, the services that these patients require either do not exist or are fragmented.
"We are currently in a situation where the mental health services of older people are focused on people aged 65 and over, while adult mental health services do not necessarily have the specific skills and experience to meet the needs and complexities of dementia in younger people.
"This leaves us with a gaping gap that are falling in people with younger onset dementia and is devastating for families nationwide."
More than 40,000 people in the United Kingdom have been diagnosed with younger dementia.
Ms. Chaabane, who is based at Southampton General Hospital, said the majority had been "squeezed" into more traditional services that may not have the skills or experience in managing the condition.
He added: "Someone with juvenile onset dementia could only be 40 years old with an active life, young children and a full-time job.
"A diagnosis will not only be unexpected but completely changes the life of the patient and his family and it is essential that they have continuous support to help them adapt and find specialist services".
Ms Chaabane offers a range of ongoing support that includes home visits.
"Having a nurse who specializes in this role can be a real lifeline for patients and their families in the most difficult times," he said.
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