Alzheimer Scotland DAW Conference - 3 June 2016

1. In search of a hidden place:
end of life and palliative care in dementia
and older age.
Dr Donald Macaskill
CEO, Scottish Care

2. A hidden place ...
“I knew she was dying not so much because her pain had
changed, or that her distress was different but because she
looked at me from a place I hadn’t been to; her touch had
changed; our togetherness even in her absence became more
and more remote. I just knew. I felt it somewhere deep inside
me where my words couldn’t speak.
In her last days we spent time just being with each other,
reaching inside one another, and even though she was
disappearing every day I think we found that hidden place of
hope. ”
A hidden place …

3. A hidden place ...
• Changing attitudes and practice
• Communication
• Bereavement models
• Pain and distress
• Palliative partnerships.
A hidden place …

4. Changes
• Cultural alienation from death and dying
• Medicalisation of end of life experience
• Alienation from familiar place
• Loss of community grieving
• Fear of old age
• Pathways replacing journeys.
A hidden place …

5. Research shows that
‘… the highest proportion of people with advanced
dementia (are) living in a care home with a smaller
number continuing to live at home.’
(Alzheimer Scotland: Advanced dementia practice model: understanding and
transforming advanced dementia and end of life care.)
A hidden place …

6. Communication
‘… Ward et al (2008) found people with dementia living in care
homes invested great effort in attempting to engage the people
around them. Their study of interactions between care staff and
residents found these were characterised by the conducting of
tasks in a standardised manner, as opposed to engaging more
socially with the person.
(Alzheimer Scotland: Advanced dementia practice model: understanding and
transforming advanced dementia and end of life care.)
A hidden place …

7. Communication
‘Whilst the person may no longer be able to use words to
communicate, other forms of expression will be found and this calls
on the resourcefulness and creativity of those around the individual
to tune into these messages…
An inclusive approach is required in considering and responding
to what may represent attempts at communication by the person.
Physical movements, sounds and other embodied gestures can be
seen as attempts at communication and expressions of selfhood in
people with advanced dementia.’
(Alzheimer Scotland: Advanced dementia practice model: understanding and transforming advanced
dementia and end of life care.)
A hidden place …

8. A hidden place …
“When you combine
the fear of dying with a
fear of sharing you end
up being silent… when
you have the courage
to not know the
answers then you start
to understand...”

9. Bereavement and Grief
‘The spiritual, emotional, grief and bereavement aspects of
advanced illness and end of life should be included.’
(Alzheimer Scotland: Advanced dementia practice model: understanding and
transforming advanced dementia and end of life care.)
• Explore different bereavement models
• Need waterfalls rather than pathways
• Death education specifically its relationship to
anticipatory care and advanced planning
• Holistic grieving.
A hidden place …

10. A hidden place …
“It’s like being soaked with different emotions every moment of
the day… one minute I’m drowning and cant cope, then I’m on the
shore coping, then I’m becalmed... It’s what lostness feels like
event though he’s still here.”

11. Pain and distress
‘… pain is challenging because of the difficulties with communication
and assessment ... A review of pain in dementia considered there to
be a high risk of under-treatment of pain and a need for even greater
attention to proactive assessment in the presence of cognitive
impairment …
People with advanced dementia can work around communication
problems with the collaboration of others so their needs can be
better understood. This relies upon the ability of those caring for the
person to recognise and interpret the signs of distress such as facial
expressions, movements, behaviours and vocalisations.
(Alzheimer Scotland: Advanced dementia practice model: understanding and transforming advanced
dementia and end of life care.)
A hidden place …

12. Who Cares?
‘It was considered important that those providing care
should be recognised for their expertise in
understanding the needs of the person. They should be
enabled to continue to be involved in care as much as
possible when the person is no longer at home, as they
will pick up changes and recognise the expression of
distress... The importance of bereavement support was
also highlighted.’
(Alzheimer Scotland: Advanced dementia practice model: understanding and
transforming advanced dementia and end of life care.)
A hidden place …

13. Palliative partnerships
The mutuality of shared skill,
personal vulnerability and
openness creates space for
person centred dying.
A hidden place …

14. A hidden place ...
“I knew she was dying not so much because her pain had
changed, or that her distress was different but because she
looked at me from a place I hadn’t been to; her touch had
changed; our togetherness even in her absence became more
and more remote. I just knew. I felt it somewhere deep inside
me where my words couldn’t speak.
In her last days we spent time just being with each other,
reaching inside one another, and even though she was
disappearing every day I think we found that hidden place of
hope. ”
A hidden place …

15. Thank you
Dr Donald Macaskill
Email: donald.macaskill@scottishcare.org
Twitter: @DrDMacaskill
www.scottishcare.org
A hidden place …