The Herald and the Glasgow Times have partnered with Alzheimer Scotland to launch Think Dementia - a campaign to improve health equality, treatment, awareness and the lives of everyone in Scotland touched by the disease. 

There is currently no effective treatment and no cure for the condition and patients in the final years of their lives face “an injustice and an inequality” because they are forced to foot the bill for specialist nursing care unlike those suffering from other terminal illnesses like cancer, says Henry Simmons, head of the charity Alzheimer Scotland.

READ MORE: What is fair dementia care?

The charity says current policy is failing patients at the end stages of the disease because the needs of patients are assessed as social care rather than health care. Families face difficult choices to fund specialist nursing that should be a basic right.

The Herald:

We have issued a rallying call to the Scottish Government to end this unfair disparity in care costs.

We are backing Alzheimer Scotland’s Fair Dementia Care campaign, which calls for a manifesto commitment from all parties ahead of the 2021 Scottish election that patients with advanced dementia will no longer be forced to foot the bill of end of life medical care.

They want this to be one of the first acts of parliament after the 2021 Holyrood election as well as a commitment that all families will receive at least a year of post-diagnostic support.  Alzheimer Scotland estimates just 50 per cent receive this due to a shortage of dedicated link workers.

The Herald:

Jim Pearson, Director of Policy and Research at Alzheimer Scotland, said: “We are delighted to join The Herald and the Evening Times for our ‘Think Dementia’ campaign to firmly put the spotlight on the issues that matter to the 90,000 people with dementia, their families and carers across Scotland.”

“We welcome their commitment to raise awareness and help ensure that we close the gaps between the aspirations dementia policy in Scotland and the real lived experience of many people. We also welcome their support to end the inequalities faced by people with advanced dementia in our Fair Dementia Care Campaign.”

The Herald:

Henry Ainslie, deputy editor at the Glasgow Times and campaign coordinator, said: “More than 90,000 people are living with dementia in Scotland, and we want to make a difference for every one of them.

“Dementia is the biggest public health issue facing Scotland and it is time for action from our government and healthcare system. In its advanced stages it requires specialist personal care which comes at a significant cost for those living with dementia and their families – they should not face the additional worry of having to find the cash.

The Herald:

"This campaign will fight to ensure no family in Scotland ever has to be in that position.

"We also want to highlight the importance of proper care for those living with dementia and will shine a light on the significance of identity and dignity for people with the disease."

He added: “Working with our campaign partners at Alzheimer Scotland and Glasgow's Golden Generation in pursuing this action, we are showing how committed The Herald and the Glasgow Times are to fighting on behalf of our audiences and making a difference in society.”

We are also calling for people to show their support for the campaign by signing the Alzheimer Scotland Fair Dementia Care petition at alzscot.org/fair-dementia-care-sign-up-form.

The charity hopes to gain 10,000 signatures – which The Herald and Glasgow Times want to boost to 50,000.

Caroline Wilson, senior reporter at the Glasgow Times and campaign content lead, said: “When I started work on this campaign I was largely ignorant of the challenges families affected by dementia face when relatives reach the advanced stages of the illness.

“It has now become clear to me that those directly affected are facing a major injustice. It seems ludicrous that people in the final years of their lives are entitled to free NHS care if they are admitted to hospital as an emergency patient but as soon as they are discharged they are responsible for their own medical costs.”

READ MORE: What is Dementia and how do I access support?

Richard Donald, chief executive of Glasgow’s Golden Generation, added: “Glasgow’s Golden Generation has been caring for those in their autumn years for over 70 years and has seen a sharp increase in the number of service users living with dementia in more recent years.

“There are over 8,000 older adults living with some form of dementia in Glasgow alone and it is vital that there is more hands-on support for these people, their families and carers. GGG is excited to be involved as a charity partner in this campaign and believes that with better education, funding, awareness, support and more research, people living with dementia in Glasgow can live their lives to the full and flourish in their autumn years.”