Getting end of life care right for people living with dementia

Categories: Care.

The aim of today’s seminar is to focus on how we can break the barriers that people with dementia face at the end of life and ensure there is greater awareness of the needs and experiences of people living and dying with dementia, their families and carers.

Discussions will centre on patient and family experiences and policy and strategy, with experts from across Scotland to help stimulate debate.

Professor June Andrews, director of the Dementia Services Development Centre (DSDC) at the University of Stirling will set the scene and explore the challenges. Delegates will then hear from experts from the Scottish government, Edinburgh council and a number of third sector organisations.

The outcomes from the seminar will feed into ongoing public policy work surrounding dementia at the end of life.

Dementia isn’t always thought of or recognised as a terminal illness. As a result, many people with dementia do not get the palliative care they need as they approach the end of their lives. Those that do receive it later than they should. This is not good enough.

Palliative care can make a significant difference to the quality of life for people living with terminal illnesses; treating or managing pain and other physical symptoms of a person’s condition as well as addressing any psychological, social or spiritual needs.

Nearly 11,000 people in Scotland who need palliative care each year are not accessing it. Research in primary care in Scotland indicates that only one in five people with dementia are identified for palliative care, aligning with UK research in acute medical wards in hospitals showing that fewer than one in ten people with dementia are referred to palliative care specialists.

In February 2015, Marie Curie published a report (‘Living and dying with dementia in Scotland: Barriers to care’) focusing on dementia as a terminal condition and the barriers which prevent many people from accessing and receiving appropriate high quality palliative care. We found that people with dementia are not being appropriately identified for end of life care, they often have less access to it, and receive poorer quality care than people with other terminal illnesses.

Dementia still remains largely overlooked in palliative care

Scotland’s population is ageing and that means people are living longer. The National Records of Scotland predicts that the number of Scots aged 75 or over will increase by 85% by 2039 – that’s over 800,000 people.

As people live longer, they are more likely to develop long-term conditions, have more complex needs and potentially multiple conditions. A study in 2012 showed that 67% of adults aged 65 and over have more than one long-term condition in Scotland.

Dementia may be someone’s primary condition or it may be one of many they have.

This growing complexity means we have an ever increasing challenge to ensure that everyone gets the care they need at the end of their lives and we have to act now to make sure this is possible.

The Scottish government is currently consulting on its 3rd National Dementia Dialogue to help shape Scotland’s 3rd National Dementia Strategy due to be published in early 2016.

It is also in the process of drafting its Strategic Framework for Action on Palliative and End of Life Care, due to be published in December 2015, which will help co-ordinate palliative care service delivery across primary, acute and community settings.

These Scottish government policy developments give us the perfect opportunity to shape the caring services for people with dementia at the end of life, making sure that people like Joan and her family are supported earlier and know where to go to get the help that they need.

Outputs from the seminar will be fed into the development of policies and strategies to help shape the health and social care landscape in Scotland.

We know it is possible for people to feel safe, supported and cared for from diagnosis right up until the end of their lives. Let’s make sure that everyone who needs palliative care and support gets it.

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