Alzheimer Scotland says Scotland’s ‘fragmented’ residential care system is on the brink of collapse, as it calls for urgent action from the Scottish government to create an effective national long-term dementia care plan.

A new report from the national charity reveals that Scotland’s care sector is failing to meet the diverse long-term needs of people living with dementia across Scotland.

Alzheimer Scotland is calling for greater public debate alternative approaches to funding and paying for care and innovations in care.

The report highlights that many people in Scotland believe that dementia care is free, which it explains is ‘simply not true’.

It recommends the government engage in ‘open, honest discourse’ around the reality of the cost of social care and to help the health and care sectors to work more closely.

Many people – particularly those with advanced dementia – face care bills of thousands of pounds each week.

People with other terminal illnesses, like cancer, can receive this care for free – something Alzheimer Scotland says people with advanced dementia should also be entitled to.

Henry Simmons, Alzheimer Scotland Chief Executive, says the current situation is unfair and must be stopped:

“Many thousands of people face this inequality because they are deemed to have a moderate estate, but this should not be the issue. This is never considered in any other part of our health care system and we desperately need to bring an end to this inequality and unfairness.

“A fiscal challenge is not a good enough excuse for the Scottish government to continue to allow this inequity to exist. It must end – and people with advanced dementia deserve much more personalised long-term care options that reflect what they want and need, not what the budget ceiling dictates.

“They deserve what is right and what is fair.”

Time for a rethink

The report was produced by Alzheimer Scotland’s Commission on the Future of Long Term Care, which brings together health and social care professionals and those with lived experience of dementia to consider alternative approaches to long-term dementia care.

It also highlights how a lack of national and local strategic commissioning and planning has left the residential care home system largely in the hands of the open market.

The charity says the current system sees many people across Scotland facing a ‘one-size-fits-all’ approach to care that does not cater well to individual needs or wishes.

Alzheimer Scotland says that not only does this leave care provision in many areas at risk of collapse as financial pressures build, but also ‘stifles innovative community-based long-term care’.

Henry McLeish, former First Minister and the Commission Chair, says a “rethink” in delivering and funding care is needed:

“The future of long-term care stands as one of the most pressing challenges confronting our nation today.

“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.

“We must re-think how we deliver and fund care, now and in the future.”

Henry Simmons adds that there is a lack of “meaningful local plans or strategy” in long-term residential care for people with dementia – with a financially driven sector in a “critical state”.

The report calls on the government to establish a citizens’ assembly to engage across society on the type of alternative approaches to care that people want to access to meet their long-term care needs.

Mr Simmons says lived experience is key to putting in place services people want, and further investment is needed to create innovative person-centred approaches to long term care.

He says that the government must work alongside health and social care partnerships to lead Scotland “through this crisis” and prepare for growing demands, adding:

“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 reliance that we have on one model of residential care must be challenged.

“We need to listen to the voices of people living with dementia now, engage local communities and ensure that we build meaningful high-quality long-term care services across Scotland.

“We urge the government to implement all of the recommendations in this report as a matter of urgency, and deliver fairness, equality and the best possible long-term care to one of our most vulnerable communities in Scotland.”

The report also calls for the establishment of agreed levels of care home and alternative care model places that should be equally available across Scotland.

This comes after Scottish Care revealed care services are at risk from delayed payments and Scotland’s social care minister confirmed that work towards more ethical commissioning is coming soon. 

Scottish Care’s Chief Executive Donald Macaskill now says the report highlights just how much needs to change – and that people ready to support that change:

“This report makes clear that people want to have a wider selection of choice about the care they may need and that they want more voice and control.

“The Scottish government urgently needs to prioritise social care and has to create an environment where external investment is able to support providers to innovate and develop new models of care and support.

“In addition, the time has long passed for the inequity of people living with dementia having to pay for support and care which are essentially healthcare needs.

“There is so much that needs to change and no shortage of people wanting to support that change. The ball is well and truly in the hands of ministers.”

Choice in care

The Royal College of Physicians Edinburgh is urging the government to take forward the report’s recommendations to better support people living with dementia and their families.

Professor Andrew Elder, President of the College says prioritising people’s needs and choices in their care will help develop “better and more fairly funded” services.

Professor Elder added that it is also essential to build capacity and collaboration across health and social care for the growing number of people with dementia.

Bill Alexander, a full-time carer for his wife Christine who has Alzheimer’s and vascular dementia, is a member of the Commission.

He says that the cost of care for people with dementia is unfair and must change, and urges the government listen to voices of experience:

“We want a future where we have choices in what our long-term care looks like.

“The worry for me is a future where the only option is a care home. It is simply wrong that there is no national plan for people like Christine and me.

“I urge the government to listen to the voice, hopes and wishes of people living with dementia and their families. Put yourselves in our shoes – would you want only one option for your parents, your family? Would you want this for your own long-term care?”

Read more: Action needed on women's brain health; Voices of experience key to dementia care; Doctors ‘deeply concerned' for care homes over winter; Economic change key to Scotland’s health inequalities

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