The Fife Dementia Strategy: 2010 – 2020 - The Knowledge Network

4.13 Palliative & End of Life Care
AIM
People with dementia and their families receive care that integrates a
palliative approach and is of high quality through to the end of life. The
care delivered is based on planning by the person with dementia and their
family which is completed following diagnosis and reviewed regularly.
RECOMMENDATION TO ACHIEVE THIS
4.13.1 Ensure the needs of people with dementia and their carers are
recognised in the development and delivery of the Living & Dying Well
Local Action Plan.
Many people traditionally associate palliative care as an approach which is
employed as a person nears the end of life; however the palliative care
approach extends far beyond this. It focuses on the person, not the disease,
and applies a holistic approach to meeting the physical, practical, functional,
social, emotional and spiritual needs of patients and carers facing progressive
illness and bereavement. In order to improve the care of people with dementia
it must be recognised by everyone involved in their care recognises this.
Dementia is not often viewed as a terminal disease, likely due to its
progressive nature. However, as highlighted in Living & Dying Well, palliative
and end of life care are integral aspects of the care delivered by any health
and social care professional to those living with and dying from any advanced,
progressive or incurable condition 75 . Unlike cancer, organ failure or other
terminal conditions, it can be very difficult to accurately assess when a person
with dementia reaches the terminal state (less than 6 months until death), and
for this reason end of life care plans are not considered or prepared by the
majority of people with dementia until they have significantly progressed, often
beyond the point of having sufficient mental capacity to make decisions
Having Alzheimer’s, you’re alright today, you might not be alright
tomorrow, sort of thing. You might not be alright next week, next month,
next year. You might be alright for another 20-30 years. You don’t know.
So therefore you put that (plan) into place. (Service user with dementia)
[At the end of life] you want somebody who cares, and they need to know
what to do with you…I made sure my sister and daughter know what I
want. And they say to me, they say to me “oh, do not talk about it”. But I
say “No. I’m wanting to speak about it before anything happens to me.”
They know what to do. (Service user)
75 Scottish Government (2008). Living & Dying Well: a national action plan for palliative and
end of life care in Scotland. Edinburgh.
83