A new report by Alzheimer’s Society has revealed the stark reality of life for thousands of families affected by dementia in the South West.
The charity’s largest-ever survey, capturing the voices of almost 3,500 people across the UK, shows that one in five people affected by dementia received no healthcare, social care or financial support after diagnosis. Of those who did get help, fewer than half said they were satisfied with it.
Only 29% found dementia-related care easy to access, while more than half believe the situation could be improved if more trained dementia care professionals were available.
The Lived Experience Survey, published ahead of World Alzheimer’s Month, paints a picture of a system under pressure and families struggling to cope without the help they need. Across the South West alone, more than 101,500 people are living with dementia, with a third still undiagnosed.
Professor Fiona Carragher, Chief Policy and Research Officer at Alzheimer’s Society, said:
“Almost a million people are living with dementia in the UK, yet its scale and the day-to-day realities often remain hidden. These findings show too many people are going without the help they need – whether it’s support after a diagnosis, trained care professionals, or someone to turn to when things get hard.”
Among unpaid carers, the toll is particularly severe. The survey found that over one third reported a decline in their own mental health, and nearly a quarter felt socially isolated. Some groups face added barriers: 38% of unpaid carers said they don’t feel respected by social care professionals – rising to 60% among carers from ethnically diverse backgrounds.
One carer, Hayley O’Rourke from Portishead, described the strain of caring for her father Tony while raising her children and working full-time.
“Balancing care for my father alongside being a mother and managing work feels overwhelming at times,” she said. “The past couple of years have been filled with ongoing grief – we lose more and more of dad to dementia every day. When I first started caring, I felt very isolated. Dementia doesn’t affect one person, it affects entire families.”
The report also found that stigma continues to act as a barrier, with two in five people living with dementia saying they feel ashamed or stigmatised – deterring some from seeking a diagnosis in the first place.
Actor Anne-Marie Duff, an Alzheimer’s Society ambassador whose brother lives with early-onset Alzheimer’s, urged people to join the campaign:
“It’s shocking just how many people still feel isolated and helpless, receiving little support from the social care system. We must make dementia a priority – for everyone affected.”
Alzheimer’s Society is now calling for urgent improvements in diagnosis, investment in care, and better support for families across the region.
To join the campaign to end the devastation caused by dementia, visit alzheimersociety.org.uk. For support, call the Dementia Support Line on 0333 150 3456.
