Right now in Scotland, people living with advanced dementia in care homes don't have equality of access to free health and nursing care that someone diagnosed with another progressive, life limiting condition would have. They have to pay for this care because it is not recognised as health care. This inequality was highlighted in the 'Delivering Fair Dementia Care for People with Advanced Dementia Report' which was published in 2019. Following the report the Fair Dementia Care Campaign was launched and started to raise awareness of the lack of equality of access to healthcare for people with advanced dementia, and set out to achieve fair care by working with the Scottish Government. Alzheimer Scotland asked members, supporters and the general public to sign up and support the campaign, and to date have over 18,000 signatures.
There is estimated to be 90,000 people living with dementia in Scotland today, and with an ageing population this figure is only set to increase. This is an issue that can impact anyone, and it's often never thought about until people find themselves at a point of crisis.
When the Covid-19 pandemic hit in early 2020, it shone a spotlight on this inequity. May people in care homes tragically lost their lives and others were unable to have visitors due to restrictions, and still, people with advanced dementia continue to face care home charges for what are clearly health and nursing care needs. On 6 May 2021, the Scottish General Election will be held. Alzheimer Scotland are calling on candidates to pledge their support for the campaign, specifically around the assessment process and the charging policies. Ahead of the election, Alzheimer Scotland are asking members and supporters to contact their candidates to sign a pledge to deliver Fair Dementia Care. Find out how you can support the campaign here.
Below, some of the SDWG members share their views on the Fair Dementia Care Campaign.
"I think it's important to raise the profile politically. It would be a strength to get a champion in Parliament. If we had someone with a voice, not necessarily living with dementia, but someone who understands the disease, it would be invaluable. I think as well that there needs to be a focus or reference to younger people such as myself that get the disease early, or in the middle of their life."
SDWG Member Tony
"I think the campaign is an amazing acheivement. It's one thing to achieve support in theory but the complexity of this area is so testing. I have been surprised by the lack of campaigning, I would have thought that a lot of politicians would see this as an opportunity to make a case for themselves and I've not seen many individual MSPs finding questions to ask or campaigning on the issue."
"I think the report and campaign are really well done. Yes, it's clear that the campaign only focuses on people further along their dementia journey, but I think it's really good that dementia care issues are being put forward to the government. To all candidates, no matter what party, I'd like to say that dementia affects everyone. No matter your affiliation, all candidates should sign the pledge. I think there should be no question that candidates should want to sign this pledge."