A diagnosis of dementia is daunting at any age, but for those who are diagnosed with younger onset dementia (classed as anyone under 65), the challenges are even tougher.

Those with younger onset dementia – currently estimated at 42,000 in the UK by Alzheimer’s Society – are more likely to face shortfalls in care than those who are diagnosed at a more advanced age. And making the actual diagnosis is a challenge in itself, as the symptoms are often attributed to stress or depression, or present themselves in a more atypical way than with later onset dementia. For instance, it is initially more likely to cause problems with movement, walking, coordination or balance than with memory.

But now a pioneering post at University Hospital Southampton NHS Foundation Trust is aiming to close the gap in care that so many living with the condition are facing. Fiona Chaâbane, an expert in younger onset dementia, works as a dedicated clinical co-ordinator for patients living with younger onset brain disorders. Her role includes home visits, clinical monitoring and patient and family support.

‘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,’ Chaâbane said.

For those who are diagnosed in their 40s or 50s, possibly with children at home and a full-time job, specialist support is a must.

‘Having a fully-trained specialist nurse in this role can be a real lifeline to patients and their families at the most difficult times,’ added Chaâbane. ‘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.’

The role at the hospital 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. It is hoped that if the role proves a success it can be rolled out to other hospitals nationwide, establishing it as a national standard of care.

Younger onset dementia – the Facts

  • Younger onset dementia is defined as dementia in anyone under 65
  • It is more likely to be hereditary than older onset, but this is still rare
  • A younger person is more likely to have a rarer form of dementia, often making it harder to diagnose
  • There is no cure, but there are drugs that can help with some of the symptoms Click here to read about them.
  • Keeping fit and well and sticking to a healthy diet will help to slow the progress of dementia
  • Talking therapies and counselling may be of help to deal with the approaching life changes