First dedicated nurse appointed to tackle ‘void’ in care of early onset dementia

Families are being “devastated” by a “void” in care provided for people who develop dementia under the age of 65, according to a leading nurse.

Fiona Chaabane has been appointed as the first dedicated nurse in the UK to co-ordinate care for patients living with younger onset brain disorders.

Ms Chaabane (pictured), who is based at Southampton General Hospital, 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 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.”

More than 40,000 people in the UK are estimated to have been diagnosed with younger onset dementia and Ms Chaabane said the majority were “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.

Ms Chaabane said: “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 Chaabane said, after investigation and diagnosis by a specialist neurology team with an annual review, interim and ongoing community monitoring and support could be difficult to obtain unless patients are in crisis.

As part of her newly-created post with University Hospital Southampton NHS Foundation Trust, she provides a range of continuous support including home visits, expert liaison, clinical monitoring, patient and family support.

She said: “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.”

Yinglen Butt, Royal College of Nursing associate director of nursing – clinical standards and supporting practice, said: “It’s estimated that by 2025, more than one million people will be living with dementia in the UK, so how we care for people with dementia needs to be transformed to address the blindspot in services provided for younger-onset patients.

“That means as we begin to understand more about the disease, the services need to change and be given the funding to do so.

“As well as earlier diagnosis, dementia patients now and into the future need to know there will be enough specialist nursing staff to care for them.

“They also need a properly funded social care sector that can support them to live in dignity, as independently as possible, and with care tailored to them.”

Copyright (c) Press Association Ltd. 2019, All Rights Reserved. Picture (c) Royal College of Nursing.