Dementia – the true cost: Fixing the care crisis

Our 2018 report: Dementia - the true cost 

Every week Alzheimer’s Society supports thousands of people with dementia and hears of their daily struggle with failing social care support.

Dementia – the true cost builds on our existing research and campaigns. It’s based on qualitative research from five listening events with people affected by dementia, social care professionals and dementia lead nurses in Winchester, Newcastle, Birmingham, Cardiff and Belfast.

In total, we gathered evidence 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.

What we found

• People are facing catastrophic costs to pay for their care and support. They wouldn’t be expected to make this sacrifice if they had another medical condition.
• People struggle to access the vital care they need in the first place.
• Once people affected by dementia get support, their care is often poor quality.

What united everybody at our listening events was overwhelming anger at the decades of political inaction that has left people affected by dementia enduring inadequate care and crippling costs.

“Why is dementia treated so differently from cancer or any other life-threatening disease? Why should we be left in this position and faced with forfeiting so much of our income and our home just to get the support he needs? I’m happy to pay towards care, but what’s expected is just too much.”

Jean, who has been caring for her husband, Rodney, since his diagnosis of vascular dementia in 2014

“Some of us can’t afford basic adaptations – I couldn’t afford a bed sensor for my mother. She went missing one night and the local police force sent out two helicopters and two police cars to search for her. What would’ve been more cost effective?”

Carer of a person with dementia

“While dad was in hospital, I applied for NHS Continuing Healthcare Funding. He was doubly incontinent, unable to feed himself and confined to a wheelchair, but social services told me that I didn’t stand a chance of getting the funding. When I asked 'what does a patient have to be to qualify' her reply was 'practically dead'.” 

Carer of a person with dementia

We’re calling for change

We’re calling on governments in England, Wales and Northern Ireland to reform social care, to end the inequity and deliver the change that people affected by dementia deserve.

We want to see action on:

1. Cost – the cost of extra care charges for a health condition must be covered by the state
2. Quality – all health and social care workers must be given the training and support they need to deliver quality dementia care
3. Access – everyone with dementia should have a care navigator to support access to timely, preventative and integrated support