24/04/2026
This story is what I have been saying for over 10 years, and if my health allows me I will continue to speak out about lack of guidance and support for People Living With Dementia.
Steve FFL.
‘People with dementia are brushed to the side, they are not on the radar. Cancer has a pathway, with dementia you still have to navigate it all yourself.’
Adam works for Alzheimer’s Society, and cared for his beloved mum, Alice, who had vascular dementia. Sadly, Adam’s dad, Tony, also passed away from cancer during his mum’s illness.
‘After Mum’s diagnosis, I tried to navigate the disease myself as best I could, trying to find out what would happen and how to look after Mum, with no support from the GP or the Memory Clinic.
‘When Dad was diagnosed with cancer, his care included Macmillan Nurses as part of his Cancer Pathway. This was in sharp contrast to Mum’s dementia, which had no clear pathway and no care allocation.
‘After Dad died in 2020, Mum deteriorated more quickly.
‘I reached out to ask for help, but I felt isolated, without any clear support network. There was no support from the GP, Memory Clinic or Social Services.
'I did a lot on my own. I was never given any literature or signposted to organisations for support.
‘The Social Worker did put a care package in place, but I needed to be Mum’s advocate and fight for everything. I had 4 different Social Workers in 12 months and I found it challenging to negotiate their duty and understand what we were entitled to.
‘I was Mum’s full-time carer, doing the best I could. I was so stressed that I once called the paramedics as I thought I was having a heart attack!
‘In 2022, Social Services said they could not pay the level of home support that they had been and either I give up my job or Mum would have to go into a care home.
‘I could not afford to give up my job as we couldn’t exist on the Carer’s Allowance, so Mum moved into a care home. She passed away in early 2023.
‘Social Services should have people who are specialists in dementia and have more extensive training to support families and people affected. Right now, it is a postcode lottery for the care and services available across the UK.
‘I hope by telling my story I can help others who are caring for a loved one with a dementia diagnosis.’
