Scotland needs urgent plan for the future of long term care for people with dementia

A new report reveals a fragmented residential care system that is failing to meet the long term care needs of people with dementia.

A major new report published today by Alzheimer Scotland 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. And as financial pressures build, provision in many areas is now at risk of collapse.

The current approach also stifles the development of innovative community-based long term care models, forcing a one-size-fits-all approach that does not cater to the diverse needs or wishes of people with dementia.

The report also highlights that many people in Scotland believe that care is free. This is simply not true. Many people – particularly those with advanced dementia – face care bills of thousands of pounds each week.

Alzheimer Scotland believes people with advanced dementia should receive free long term care, as they would if they had any other form of terminal illness.

Henry Simmons, Alzheimer Scotland’s Chief Executive, said: “Long term residential care for people with dementia has been developed largely through an open market approach, with no meaningful local plans or strategy.

“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.

“We also need to design and commission services that people want. Further investment is needed to create more innovative person-centred approaches to long term care. 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.

“Added to this are the inequalities that people with advanced forms of dementia are facing in terms of the inordinate cost of care. Even people who are in the terminal stages of advanced dementia are having to pay between £1200 and £2000 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.

“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.

“We urge the Scottish 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.”

Henry McLeish, Long Term Care Commission Chair, 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.”

Donald Macaskill, Scottish Care’s Chief Executive, said: “Long term care matters for all of us. The way in which residential and nursing care is delivered today will inevitably change over the years.

“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.”

Sara Redmond, Chief Officer of Development at the ALLIANCE, said: “I welcomed the opportunity to support the work of this commission which draws much needed attention to the inequity and unfairness which exists in our health and social care system when a person requires long term care to enable them to live well and with dignity. Too often the support available is determined by the ‘label’ or diagnosis a person is given and the resources attached to this. The lack of a coherent strategy for supporting the long term care needs of people in Scotland coupled with a reliance on a market driven approach for the options available to people is not respecting people’s rights. We are in a financially constrained time and whilst the recommendations in this report might feel difficult to achieve because of this, I am certain that we cannot afford to keep overlooking the systemic issues described in this report.”

The report was produced by Alzheimer Scotland’s Commission on the Future of Long Term Care in Scotland. Set up in 2022 and chaired by former first minister Henry McLeish, the commission brings together a wide range of voices, including health and social care experts and those with lived experience of dementia.

It makes 16 key recommendations designed to safeguard and redefine the future of long term care in Scotland.

These include calls for the Scottish Government to:

• urgently work with health and social care partnerships to undertake a full strategic assessment of the provision of long term care facilities and resources in each area.
• establish agreed levels of care home and alternative care model places that should be equally available across Scotland.
• 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.
• engage in open, honest discourse around the reality of the current cost of care.

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