Dementia deaths are set to more than double over the next 20 years, new research has found, leading to calls for a new national strategy for end-of-life care.

In a manifesto published ahead of the next Scottish Parliament elections, hospice charity Marie Curie says leadership at the highest levels is needed to ensure more Scots have access to tailored support at the end of their lives.

Research by the organisation suggests an extra 10,000 people will need palliative care by 2040.

Marie Curie Scotland public affairs lead Richard Meade said “Unfortunately, at the moment, many miss out on some or all of the care they need.

“With more and more people projected to be dying every year needing a palliative approach and with increasing levels of complexity, we must plan to make sure we close the care gap before it starts to grow.”

Covid-19 has led to concerns that people might not be getting the support they need when they die at home.

Thousands of deaths from conditions like cancer and heart disease that happen in hospital in normal years have taken place in people’s homes because of the pandemic.

The trend is only set to continue, with Marie Curie research predicting that the proportion of deaths in hospital will drop to a third by 2040 – down from half in 2017.

It estimates that 60,000 people will be dying with a terminal condition every year by 2040, driven by conditions such as cancer and dementia, and often having more than one disease.

Professor Scott Murray from the University of Edinburgh Primary Palliative Care Research Group said: “We have evidence that deaths for people with dementia are set to more than double by 2040. 

“The government should thus target any new health and social care resource towards improving care for older people living and dying at home and in care homes, where we predict that one-third of people will die by 2040.

“This will also let more people die where they wish, and prevent many hospital admissions.”

Dr Anne Finucane, Marie Curie Senior Research Fellow at the University of Edinburgh, said: “More people are dying from more than one disease indicating greater symptom burden and the need for better coordinated care.

“Continued investment in digital systems and shared electronic health and social care records will be essential to meet the palliative care needs of the Scottish population.” 

The research suggests that getting the right support for people spending the end of their lives at home, in care homes and hospices will not be possible without boosting social care services.

Marie Curie’s manifesto goes on to say that a national strategy should address end of life care in all of these settings and additional help should be provided for carers and families, including bereavement support.

Marie Curie’s Richard Meade added: “The next Scottish government must work towards a Scotland where dying, death and bereavement is talked about openly, where people can plan and discuss their care and preferences, and everyone affected has the best possible end of life experience which reflects what is most important to them.”

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