We must bridge the gaps for people living and
dying with dementia in Scotland
People
who are terminally ill with dementia often find the care they need eludes them,
resulting in a poor quality of life in their final years, months and days.
In
contrast, the majority of people who are terminally ill with cancer are
referred to palliative care services, which give them appropriate care at the
end of their lives.
Living
and dying with dementia in Scotland: Barriers to care, a new report
published by Marie Curie, highlights the challenges patients face in accessing
the right care at the end of life.
We
know research
suggests that
only one in five people with dementia are identified for palliative care. Those
who receive it typically do so only in the last few weeks of life. This is
despite evidence which shows palliative care can make a significant difference
to the quality of life for all people with a terminal illness and that they can
benefit from this for many months and even years before their death.
Although
Scotland has made progress in developing dementia standards and strategies, we
have yet to see any significant data to show how this is improving care for
those at the end of life.
We need
greater progress to be made to ensure that those with dementia in the advanced
stages are being identified for palliative care at the point at which it would
benefit them.
Many
people with dementia are still being admitted unnecessarily to accident and
emergency departments, which can impact negatively on their health. Thirty per
cent of all hospital patients are in the last 12 months of life and well over
50% of people die in hospital, yet is unclear how many of these have dementia.
As with
most other conditions, the majority of people with dementia would like to die
at home or their usual place of residence, such as a care home. Even without
condition-specific data, we can see that this is very unlikely to be the case.
This must be addressed.
With
Scotland’s aging population and more and more people living longer with many
long term conditions this problem will continue to grow unless we start to act
now. There has been progress in Scotland on the care of people with dementia,
but we need to complete the picture and ensure that everyone is getting the
care they need at the end of their lives.
Marie
Curie is calling on the Scottish government to focus on end of life care in its
third dementia strategy, which it is currently developing. We would also like
to see this supported with better data that highlights the progress Scotland is
making and identifies the gaps we still need to bridge in end of life care.
Richard Meade
Head of Policy and Public Affairs, Scotland
Marie Curie
Care and support through terminal illness
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