A leading nurse says people in the UK who develop dementia under the age of 65 are “falling into a void” with little or no access to long-term specialist support.

Fiona Chaâbane, an expert in younger onset dementia at University Hospital Southampton NHS Foundation Trust, said the lack of provision was “devastating families nationwide”.

She spoke out following the creation of her role in Southampton – the first of its kind in the UK – as a dedicated clinical coordinator for patients living with younger onset brain disorders.

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 are 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. What that leaves us with is a gaping void which those with younger onset dementia are falling into and it is devastating families nationwide
Ms Chaâbane

It is estimated that there are more than 40,000 people in the UK who have been diagnosed with younger onset dementia – and Ms Chaâbane said the majority are “squeezed” into more mainstream services that may lack the expertise or experience in managing the condition.

Dementia is a disease associated with ongoing decline in cognitive brain function — memory, thinking and reasoning— and physical abilities to such an extent that it affects daily life and activities.

Although pockets of dedicated services do exist across the UK, they can be difficult to access or even find out about and patients are often squeezed into other dementia services with their specific needs unmet. The realisation we need to come to is that someone with younger onset dementia might only be in their 40s with an active life, young children, bills to pay and a full-time job to hold down. A diagnosis of this kind will not only be unexpected but completely life-changing for the patient and their family and it is essential they have ongoing support to help them adapt and find specialist services.
Ms Chaâbane

Ms Chaâbane said after initial investigation and diagnosis by a specialist neurology team and an annual review, interim and ongoing community monitoring and support can be difficult to obtain unless patients are in crisis. 

As part of her newly-created post of clinical coordinator, she provides a range of continuous support including home visits, expert liaison, clinical monitoring and patient and family support.

It is the first time a psychiatric nurse has been based both within a neurology department in an acute hospital and in the community without being part of an adult mental health team.

Having a fully-trained specialist nurse in this role can be a real lifeline to patients and their families at the most difficult times. Not only can it ensure they access all the care, treatment and support available to them in a timely manner, it also helps relieve some of the stress and emotional burden these disorders create. I really hope that, by raising awareness of this important and essential development in Southampton, we will start to see more interest and investment in this type of role and eventually establish it as a national standard of care.
Ms Chaâbane

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