Younger dementia sufferers ‘depressed’

People who develop dementia at a relatively young age are affected by depression, a sense of loss of role in the family and the community, and loneliness, yet supports are limited for this group, according to research.

A ‘Living Well with Dementia’ conference held in Cork yesterday, organised by the education centre at St Lukes Home in Mahon, heard 3,583 people in Ireland are affected by early onset dementia, with that figure expected to rise to 5,000 in the next year or two.

Caroline Kilty, who has completed a PhD on early onset dementia, said her findings also showed that about half of dementia sufferers’ caregivers reported suffering from anxiety and depression themselves.

Because of the relatively young age of early onset dementia patients, (under 65) there was “a good chance their kids are still at home” and were “more likely to be affected by gaps in [support] services”, Ms Kilty said.

This age group often had difficulties obtaining a diagnosis and the path to it was “long and uncertain” and misdiagnosis was a feature. Where a diagnosis was made, it meant major upheaval for the family, with revision of current and future plans and “the added concern of genetic forms of dementia”.

Quality of life for the person with early onset dementia was often poor and the diagnosis had a huge impact on the family. “It really is a family illness,” Ms Kilty said. The younger age of the patient meant there were barriers to accessing services and the family caregiver “found that hard to take on top of a diagnosis”.

Meanwhile, those affected by early onset dementia wanted more informal supports in the community such as social clubs and support groups rather than more formal interventions. Ms Kilty, who has a Masters in Mental Health Psychology, said research on dementia should focus more on early onset dementia “and also look at losses, loneliness, changes to work life and relationships”.

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