‘Crisis-prone’ care home system failing people with dementia, study finds

Scotland’s “fragmented, crisis-prone” residential care home system is failing to meet the long-term care needs of people with dementia, a report has found.

The report of the Long Term Care Commission, set up in 2022 to look into the issue of long-term dementia care, has criticised a “lack of national and local strategic commissioning and planning” around care provision, and a funding model that leaves people with advanced dementia facing care bills of thousands of pounds a week.

The commission, led by the charity, Alzheimer Scotland, and chaired by former first minister Henry McLeish, calls on the Government to take “urgent action” to address the issue, and sets out 16 recommendations that it describes as a “a roadmap to transforming long-term care”.

Henry Simmons, Alzheimer Scotland chief executive, said the lack of a meaningful strategy for long-term residential care meant the sector was being left to the open market, and this approach was failing “one of our most vulnerable communities”.

“Long-term residential care for people with dementia has been developed largely through an open market approach, with no meaningful local plans or strategy,” he said.

“This has led to a financially driven sector that is in a critical state – and in some areas at risk of collapse. We need an urgent and coherent assessment of local current and future needs, and we need to plan and design services that can meet these needs going forward.

“The Scottish Government must work closely with local health and social care partnerships to develop a strategy that will lead us through this crisis and prepare for growing future demands.”

He said that further investment was needed to create “innovative person-centred approaches” and end “inequalities” that lead to people with advanced dementia paying bills of thousands a week while people with other health conditions receive free treatment.

He continued: “Even people who are in the terminal stages of advanced dementia are having to pay between £1,200 and £2,000 per week for care. Care which would be free if they had any other form of terminal illness. Care which is health care. It is simply unfair and must be stopped.”

Commission chair Mr McLeish said: “The future of long-term care stands as one of the most pressing challenges confronting our nation today.

“As an ambassador for Alzheimer Scotland, I strongly believe that individuals should be enabled to access the care and support that meets both their needs and their wishes.

“It is wholly wrong that people with complex care needs, such as those with advanced dementia, are categorised as having solely social care needs when their requirements clearly extend into the domain of health care.

“Scotland should remain open and receptive to adopting effective strategies from other countries to improve the experiences of older people and people with dementia. We must re-think how we deliver and fund care, now and in the future.”

The report has been welcomed by the Royal College of Physicians of Edinburgh, with president Professor Andrew Elder saying: “This is an important, comprehensive and timely report that identifies the severe challenges facing the long-term care sector in Scotland and seeks to address them.”

He added: “The report is also entirely correct to recommend that health and social care should work much more closely and strategically on these significant challenges to achieve better results.”

According to Alzheimer Scotland, an estimated 90,000 people are currently living with dementia in Scotland, with about 19,000 of those living in one of the country’s 1000 care homes.

The number of people aged over 65 with dementia in Scotland is predicted to increase by 50% over the next two decades. Official Government estimates suggest as many as one in three people born today could go on to develop the condition.

A Scottish Government spokesperson said it “remains committed to the removal of non-residential social care support charges so that services are based on a person’s need and not their ability to pay”.

They added: “We will continue to work with partners, including Cosla, to explore and agree an approach to ending all non-residential social care support charges within the lifetime of this Parliament.

“The National Care Service will deliver an opportunity to transform the way social care is delivered in Scotland.

“We will consider this report’s findings and work with Alzheimer Scotland and our partners to identify new ways that we can support people living with dementia”.