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End-stage dementia patients deserve the same
access to palliative care as people with
cancer…International
review covers research from 9 countries
There is an urgent need to improve
end-of-life care for older people in the
final stages of dementia, according to an
international review published in the May
issue of Journal of Clinical Nursing.
“We must act now to stop people with
dementia from suffering from protracted,
potentially uncomfortable and undignified
deaths” says Jan Draper, Professor of
Nursing for The Open University, UK.
“The management of dementia is becoming a
major international public health concern
because people are living longer which means
that more people are likely to develop this
disease.”
Professor Draper teamed up with Deborah
Birch, a Clinical Nurse Specialist working
with older people in Lincoln,UK, to review
10 years of published research. They carried
out a detailed analysis of 29 studies, from
the USA, UK, Canada, Israel, Switzerland,
Ireland, the Netherlands, Sweden and
Finland.
“Our review has reinforced the importance of
providing appropriate palliative care to
individuals suffering from end-stage
dementia and clearly identified some of the
barriers to extending such provision” says
Professor Draper.
“These include concerns that such an
expansion might lead to skills and funding
shortages and, in turn, compromise the
ability of existing palliative care teams to
provide care to cancer patients, who tend to
be the main recipients of this kind of care.
“We believe that clinicians and patient
groups caring for patients with advanced
dementia need to work together with
specialist palliative care providers and
health commissioners to develop, fund and
evaluate appropriate cost-effective services
that meet the needs of both patients and
their families.
“If this is achieved, these improvements
have the potential to increase people’s
quality of life and reduce the amount of
time they spend in acute hospitals.”
Birch and Draper say that the findings of
their review indicate a number of ways that
colleagues across healthcare disciplines can
work together to enhance the quality of care
they provide older people in the end stages
of dementia. These include:
-
Communicating the diagnosis of dementia
in a sensitive way and indicating, as
clearly as possible, how the disease is
likely to progress.
-
Acknowledging the potential influence
that the individual beliefs and values
of the healthcare team - such as
difficult drug and treatment decisions -
may have on the care provided.
-
Improving and providing timely and
accurate communication about key issues,
including the role of advanced
directives, such as living wills or do
not resuscitate orders.
-
Reconsidering aggressive medical
treatments that have limited benefits
and may cause further discomfort to
dying patients.
-
Encouraging professionals, carers and,
where possible, patients to work
together to plan appropriate care
tailored to the needs of the individual.
-
Reinforcing the need for
multi-disciplinary ways of working.
-
Reconsidering the most appropriate place
to deliver end-of-life care.
-
Acknowledging the right of all older
people dying from end-stage dementia to
have access to high-quality specialist
palliative care services.
“Palliative care services are used to
providing care for cancer patients, but
high-quality care for people with end-stage
dementia does not appear to be given the
same priority” says Professor Draper.
“In the UK, for example, it has been a
relatively neglected topic in relation to
policy, planning, practice development and
training.
“Population trends suggest that life
expectancy is increasing and this will mean
that more people are at risk of developing
dementia, which affects one in 1,000 people
under 65 but rises to one in five once
people are over 85.
“Dementia is a progressive terminal illness
for which there is currently no cure and
patients dying from the disease have
significant healthcare needs.
“Despite this, they are often denied the
palliative care services that could improve
their comfort and quality of life.”
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