According to the Alzheimer’s Society there are estimated to be at least 42,000 younger people with dementia in the UK, this figure accounts for more than 5% of all those with dementia.
Steve, whose wife Julie was diagnosed with young onset dementia in her early 50s, calls for wider acknowledgement of young onset dementia and hopes for a greater range of services.
Steve recalls “She was still capable of doing lots of things and wanted to do as much as she could before the dementia progressed. She really wanted to meet or at least talk to other people who had been affected by dementia at a younger age – but it was a challenge to do this.”
“Now almost eight years from diagnosis, Julie is still six years away from pension entitlement; prescriptions only became free this year upon her 60th birthday. She has some financial support from Personal Independence Payments, but entitlement for that relies on good understanding of young onset dementia amongst assessors. The need for more support is clear.”
The need for more age-appropriate services is something that Steve feels strongly about: “Soon after Julie’s diagnosis, we contacted three support groups in our local area. We learned that the average age of people in the groups was over 75, their weekly meetings centred around tea and biscuits, reminiscing (about times before Julie was born) and singing along to old-time music such as ‘White Cliffs of Dover’. This wasn’t at all appropriate for Julie; she wanted to meet someone with Alzheimer’s disease of a similar age to her and at that time her favourite singalong would be to Lady Gaga rather than Vera Lynn.”
To learn more about Steve and Julie’s experiences, visit DementiaUK. If you would like more information about young onset dementia you could also visit – Young Dementia UK, Young Dementia Network and Alzheimer’s Society.