Decades of political inaction has left people with dementia enduring inadequate care and crippling costs.
Enough is enough.
With few treatments available and no cure in sight, social care is the majority of care people will get after a dementia diagnosis.
To Fix Dementia Care, the Government must invest in a new care system that puts quality at the forefront and doesn't lump huge bills on families. This summer, we are calling on Government to stop failing people with dementia and plan for a system that works, once and for all.
Our new report, Dementia - the true cost: Fixing the care crisis
Published this week, our new report is based on qualitative research from listening events across the country with people affected by dementia, social care professionals and dementia lead nurses.
In total, we gathered evidence and testimony from over 70 people to get an in-depth understanding of the challenges they face to get the care they need. Many had been struggling for years, abandoned by a broken system, without any support or anyone willing to listen.
Lynda Basford, whose husband Michael is living with dementia, (pictured above) told us:
'My husband Michael is 82 and was diagnosed with dementia in 2005. For 12 years we managed at home together.'
'In April 2017, Michael moved into a care home after it was decided he was no longer safe at home. The council said he was eligible for some state funding, but the only home I was confident could meet his needs was a private one costing £800 a week.'
'The council contribution wouldn't cover even the most basic homes. Michael and I have ended up paying about £500 a week so he can get the dementia care he needs.'
'I'm terrified of what will happen when our savings run out this year. After nearly a year he's well settled but if I can't find any other source of income he might be evicted and we are back to square one. We saved for our retirement but we couldn't have planned for this.'
'The care people with other diseases like cancer receive from the NHS is amazing, and rightly so. But people with dementia are not treated like this. The fact he has a tag on called dementia means he has to pay - it's a real lottery."
Dementia - the true cost: Fixing the care crisis
For people with dementia, social care is an issue that can no longer be ignored.
The Government need to take action
This summer brings a key opportunity to Fix Dementia Care, in the form of a Green Paper on social care reform. We're calling on the Government to end the inequality and deliver the change that people affected by dementia deserve.
We want to see action on:
Cost - the cost of extra care charges for a health condition such as dementia must be covered by the state.
Quality - all health and social care workers must be given the training and support they need to deliver quality dementia care.
Access - everyone with dementia should have a care navigator to support access to timely, preventative and integrated support.
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