Young hit by dementia
YOUNGER people with dementia are falling into a “gaping void” because of poor access to support services, an expert has warned.
A lack of provision and fragmented or non-existent backup care is “devastating” families across the country, said Fiona Chaabane, Britain’s first clinical co-ordinator for young people with early-onset brain disorders.
She warned there is so much emphasis on helping people over 65 with dementia that there is “not necessarily” the skill to deal with younger victims.
Ms Chaabane, 60, said diagnosing the condition can be a challenge in itself as symptoms are often attributed to stress or depression.
The expert from University Hospital Southampton NHS Foundation Trust said: “Once a diagnosis has been made, the services these patients then require either don’t exist or are fragmented.
Devastating
“We are currently in a situation where older people’s mental health services are focused on those aged 65 and over.
“Adult mental health services do not 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 have been diagnosed with younger-onset dementia.
But Ms Chaabane said the majority are “squeezed” into more Fiona Chaabane wants a rethink on services
mainstream services that may lack the expertise needed to help them.
She added: “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. It is essential they have ongoing support to help them adapt and find specialist services.”
As part of her newly-created post
Ms Chaabane, who qualified as a psychiatric nurse in 1983, provides support via home visits, clinical monitoring 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.
She added: “Having a fullytrained 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.”
Sally Copley, director of policy, campaigns and partnerships at Alzheimer’s Society, said: “It’s great to see recognition of the fact that younger people with dementia have different needs – and to see this embedded in clinical practice.
“We know younger people with dementia are likely to still be working, or have children to take care of, and may need completely different support to someone older.
“This is why we are supporting research that aims to improve the diagnosis, care and support for this often-overlooked group.
“Having the right help set up from the start stops people with