Dementia: the true cost

Alzheimer Scotland premiered a short documentary film in Glasgow today, to support Fair Dementia Care. The campaign seeks to end the inequalities faced by people with advanced dementia, their families and carers, in terms of access to appropriate health care and the disproportionate impact of social care charges.

Dementia is caused by progressive and terminal neurological diseases, such as Alzheimer’s disease, yet people with advanced dementia do not currently have equality of access to free health care that people with other progressive and life limiting illnesses rightly have. The short film 'Dementia: the true cost' explores the experiences of three carers and has been produced in partnership with author and retired journalist, Mike Edwards, who has reported on the work of Alzheimer Scotland over the past two decades.

Henry Simmons, Chief Executive of Alzheimer Scotland, said: “This short documentary demonstrates the harrowing inequality that people with advanced dementia and their carers face.

“It is part of an ongoing campaign to secure cross-party political support in order to bring an end to this injustice. This issue has been hidden within our Health and Social Care system because there is no proper definition of advanced dementia or meaningful recognition of individual changing needs. These needs are clearly health care needs and should be free at the point of delivery. They are not. This means that people with advanced dementia continue to pay for all their care. This is both unfair and unequal and this film highlights how we need to bring this to an end. We’re asking everyone to watch this short documentary film, join our campaign and help bring an end to this inequality.”

Mike, whose mum was diagnosed with vascular dementia in 2015, talks candidly about his own experience of becoming a full-time carer, and meets the families and key campaigners who are all calling on the Scottish Government to work with Alzheimer Scotland, and other partners to, deliver fair dementia care for people with advanced dementia, their families and carers.

Author and retired journalist, Mike Edwards, who presents ‘Dementia: the true cost’, said: “I have reported on the work of Alzheimer Scotland over the years so when my mum was diagnosed with vascular dementia in 2015, it really hit home. This documentary was an important one to produce and I hope that we have done a good job of getting to the heart of the story.

“I’m fortunate that I can look after my mum every day at home, but a lot of people aren’t in the same position and are struggling with the cost of care. I really wanted to help tell their stories in this short documentary.”

The Fair Dementia Care Commission was established by Alzheimer Scotland to consider the inequality in access to health care and the disproportionate impact of social care charges faced by people with advanced dementia, their families, and carers in Scotland. The Commission found that people with advanced dementia are faced with an estimated £50.9 million per year in social care charges for what are primarily health and nursing care needs. When compared with other life-limiting illnesses, were care is free, this is excessive and unfair. Fair Dementia Care highlights the massive imbalance and outlines that the current system is wasting money by providing care that doesn’t meet the needs of those with dementia.

The film features Rosaleen Whyte who has experienced the inequity of the complex social care system in Scotland. Rosaleen's husband, Willie Whyte, who was diagnosed with Alzheimer's disease, vascular dementia and Parkinson's disease and was shocked to find out first-hand that things were far from straightforward when it came to her husband's care.

Rosaleen Whyte, adds: “Willie was admitted to hospital and during that time had an assessment of his needs which revealed he required round the clock care, I was also informed that he would only be released to a nursing care home. I was in shock to hear that I now faced costs of more than £50,000 per year for a care home to help with Willie’s full time care. At one stage I thought I would have to sell our home as that was the only way to meet the cost of my husband’s care.”  

“I had to find the strength to fight and after lengthy and complicated negotiations, he entered a care home with funding for half of his care in place but the other half of the funding comes from our life savings. Advanced dementia is a terminal illness. It’s a disease but it’s not treated as such.”

Watch the new campaign documentary and register your support for the Fair Dementia Care online by clicking here

The film will also be screened at Alzheimer Scotland Dementia Resource Centre’s across the country, for a full list of events visit dates please click here.

With 10,000 signatures and more, Alzheimer Scotland can build a case to ask all political parties to commit to a manifesto promise for the next Scottish parliamentary elections. Share your story at #FairDementiaCare @AlzScot