Hospital trust pioneers specialist nursing role for younger patients with dementia

A specialist nursing role developed at University Hospital Southampton (UHS) for younger people with dementia and Huntington’s disease has been enhanced thanks to a partnership with a national charity.

The role of clinical coordinator for the cognitive disorders service remains unique in the UK in combining hospital care with home visits and support for patients with these brain conditions.

It is held by Fiona Chaâbane, a clinical nurse specialist, who has joined forces with the charity Dementia UK to share her knowledge and expertise and work with the wider dementia community.

She has now been awarded the title of consultant Admiral Nurse, a role introduced in memory of Joseph Levy – a keen sailor known as Admiral Joe – whose family founded Dementia UK.

Admiral Nurses work alongside patients and their families, providing one-to-one support, expert guidance and practical solutions.

Fiona’s role involves working with patients and families in the community, reaching out from the clinic and supporting people to live as well as they can in their home or care setting, as well as advising other professionals and support services regarding management of young onset dementia (YOD) and Huntington’s disease.

YOD, sometimes referred to as ‘early onset’ or ‘working-age’ dementia, refers to people who present with symptoms at a much younger age, often in their 50s or 60s but sometimes in their 40s or even younger.

The condition is 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. It is estimated there are more than 42,000 people in the UK living with YOD, representing around 5% of the 850,000 people with the disease.

Another main focus of the cognitive disorders service is Huntington’s disease, a motor disorder which also affects the person’s cognitive and neuropsychiatric function, sometimes leading to very challenging behaviour and requiring complex symptom management.

Patients and their carers are seen by Fiona in hospital, at outpatient clinics, in the community and at home, as well as over virtual clinics which have been particularly important during the pandemic.

They are able to contact the service by phone, email, text message and via My Medical Record – an online personal health record which also allows patients to connect with their care team from home – and, in the event Fiona is not available, the office will be able to refer or give advice until her return.

“No-one expects a diagnosis of dementia if they are in their 40s or 50s or even in their 30s, so that diagnosis comes as a huge shock both to the patient and their family and it is crucial to offer the right amount of information, guidance and support from the moment of diagnosis,” explained Fiona.

“My role is to not only support these younger patients but also their families in coming to terms with their condition and all that involves, such as following up post-diagnosis and acting as a direct link between them and the neurology service.

“There is a lot we can do to help with symptoms and family support but this isn’t usually easily available for dementia or Huntington’s patients through current service provisions.”

She added: “I am delighted to have the opportunity to further develop this role through the Admiral Nursing service and the support of Dementia UK in improving outcomes for patients and their families.

“This will enhance my work and provide tremendous support to clinical services as well as to clients which enables our trust to lead in a specialist service which is so needed for this group of patients who are suffering from a condition which is devastating families nationwide.”

Dr Hilda Hayo, CEO and Chief Admiral Nurse at Dementia UK, said: “Fiona’s appointment comes at a critical time when Dementia UK is looking to expand its support for families with young onset dementia.

“Families facing YOD can face stigma and misunderstanding due to dementia commonly and mistakenly being classed as an older person’s condition.

“These families need a specialist who can give them access to tailored services and to help them plan for the future, such as around how to communicate with children about the diagnosis and support in managing challenges in and out of employment.”

She added: “We are so pleased that Fiona is taking on this role, and we hope that many families will benefit from her knowledge and understanding of YOD.”