A leading nurse from Southampton has warned that 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, has spoken out over the lack of provision for those living with the condition following the creation of her new role at her organisation.
“Having a fully-trained specialist nurse in this role can be a real lifeline to patients and their families at the most difficult times”
In a first of its kind role in the UK, Ms Chaâbane works as a dedicated clinical co-ordinator for patients living with younger onset brain disorders in which she provides a range of continuous support, including home visits, expert liaison, clinical monitoring and patient and family support.
She said that, by raising awareness of this role development in Southampton, she hoped that the nursing post would be invested in and rolled out as a national standard of care.
“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,” said Ms Chaâbane, who is based at Southampton General Hospital.
“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,” she said.
“What that leaves us with is a gaping void which those with younger onset dementia are falling into and it is devastating families nationwide,” she added.
It is estimated that there are more than 40,000 people in the UK who have been diagnosed with younger onset dementia, noted the trust.
“I really hope that we will start to see investment in this type of role and eventually establish it as a national standard of care”
Ms Chaâbane said that, despite “pockets” of dedicated services within the UK, patients were “often squeezed” into more mainstream services, “leaving 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,” she said.
“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,” she added.
The trust believes the role marks the first time a psychiatric nurse has been based within both a neurology department in an acute hospital and in the community, without being part of an adult mental health team.
Ms Chaâbane highlighted that, 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.
“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.
“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,” said Ms Chaâbane.
She added: “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.”