This document summarizes a presentation about end of life care for people with dementia. It discusses what people with dementia say about end of life care, including challenges around communication and acknowledging loss. It also examines the palliative care needs of people with dementia, noting issues around symptoms, care transitions and multidisciplinary support. Further, it outlines how incorporating a palliative approach into routine dementia care can help with advance care planning, loss and grief, and staff education. Finally, it analyzes how supporting people with dementia to die at home requires individualized care, future planning, symptom management and access to family and community support services.

1. The National Dementia Care Conference
The Future Vision Of Dementia Care In Ireland
March 2016
End of life care for
people with Dementia
 Rationale
 Challenges
 Opportunties
Marie Lynch
Head of Healthcare Programmes

2. 1. What do people with dementia
say about end of life care
2. What are the palliative and end of
life care needs of people with
dementia
3. How the palliative approach can
be incorporated as part of routine
care for people with dementia and
their families
4. Understanding how people with
dementia can be supported to die
at home

3. Irish Hospice Foundation
Our Vision is that no one
should face death or
bereavement without the care
and support they need
Our Mission is to achieve
dignity, comfort and choice for
all people facing the end of life

4. Irish Hospice Foundation Programmes
Bereavement
Education &
Research
Healthcare Public
Engagement

5. IHF Healthcare Programmes
• 25% die at
home
• 70% die with
diseases other
than cancer
• 25% die in
Residential
care
• 43% die in
Hospitals
HFH
programme
Journey of
Change
programme
Primary
palliative
care
programme
Palliative
care for all
programme
Dementia

6. 1. What do people
with dementia
say about end of
life care
2. What are the palliative and end of life care
needs of people with dementia
3. How the palliative approach can be
incorporated as part of routine care for
people with dementia and their families
4. Understanding how people with dementia
can be supported to die at home

7. 1. WHAT DO PEOPLE WITH DEMENTIA SAY
ABOUT END OF LIFE CARE You go into the
deepest grief
that one can go
into for the life
you will never
have. There's a
huge pain for
families and a
huge pain for
yourself in
realising that life
will never be as
it was

8. What peoplewith dementiasay about end of life care:
RONAN SMITH
Plan for the
probable,
work for the
possible,
hope for the
future
Hope that
people don’t
have to feel
ashamed or
awkward
about a
dementia
diagnosis….
life isn't over

9. What people with dementia say about end of life care: KATHY RYAN

10. What people with dementia say about end of life care
• Challenge
• not everyone wants to talk about it
• Their views may change – need to check in
• Staff reluctant to have the conversation
• Staff need to adapt their communication styles to accommodate
how the person with dementia communicates
• People with dementia need more information about future
• Opportunities
• Use natural opportunities
• Introduce visual cues
• Prompts and resources
• Continue to check in re preferences

11. PROMPTS and RESOURCESwww.hospicefoundation.i
e

12. 1. What do people with dementia say about end of
life care
2. What are the
palliative and
end of life care
needs of people
with dementia
3. How the palliative approach can be
incorporated as part of routine care for
people with dementia and their families
4. Understanding how people with dementia
can be supported to die at home

13. 2. WHAT ARE THE PALLIATIVE AND END OF
LIFE CARE NEEDS OF PEOPLE WITH DEMENTIA
RATIONALE
• How many people die with dementia
• Where people with dementia die
• Good end of life care for people with dementia
CHALLENGES
• Service challenges
• What are education and training needs of staff

14. Whatarethepalliativeandendof lifecareneedsof peoplewithdementia
In Ireland at
least
4,200
(14%)
people
who die
have
dementia
(based on UK stats)
? Cause of death in Ireland
? How many people die with
dementia
?Where do people with dementia
die
CSO 2014

15. Where do people with dementia die?
• 55% of people die in
Residential care (Murtagh
et al 2012)
• 40% people with
dementia die in
hospital (Sleeman et al 2014)
• 5% at Home.
Rare across Europe with rates
varying from 3.3% in Wales to
16.4% in Belgium (Houttekier et al 2010)
Sleeman et al (2014)
Residential
Care Centres
55%
Hospitals
40%
Home
5%
Hospice
0%

16. What is palliative care for people with
dementia?
PHILOSOPHY OF CARE
 Recognition of anticipatory and ambiguous
loss and bereavement – people with dementia
and families
 Planning for the future
 Recognition of support that staff need to
deliver quality end of life care
 Ascending level of specialisation – approach,
generalist, specialist
SERVICE INTERVENTION
 Assessment and treatment of pain &
symptoms (under-detected in people with
dementia)
 Advice re hydration & nutrition, medications,
pain
 Support decision making re potentially
burdensome interventions
16
Specialis
t service

17. Good end of life care for people with
dementia
Requires additional emphasis
1. Communication skills with people with dementia and
families due to cognition, capacity, lack of diagnosis
2. Assessment of end of life symptoms
due to diminishing ability to communicate and co-morbidities
3. Wider MDT involvement
due to complex symptoms & range of specialist
involvement
4. Increase in acute events/transitions
for continuity of care transitions
5. Bereavement interventions
Anticipatory and ambiguous grief and longer trajectory

18. End- of- life care needs of people with
dementia
Care Transitions
Multidisciplinary team involvement
Pain &
other
Symptoms
Communication
Loss and
bereavement

19. Service Challenges in providing a Palliative
Care Approach
PALLIATIVE CARE APPROACH
All stages
All settings
Person with dementia, their family, service providers
20

20. Education needs of Staff to provide a Palliative
Care Approach
2:
Advance
care
Planning
3:
Loss and
grief

21. 1. What do people with dementia say about
end of life care
2. What are the palliative and end of life care
needs of people with dementia
3. How the palliative
approach can be
incorporated as part
of routine care for
people with
dementia and their
families
4. Understanding how people with dementia
can be supported to die at home

22. 3. HOW THE PALLIATIVE APPROACH CAN
BE INCORPORATED AS PART OF ROUTINE
CARE FOR PEOPLE WITH DEMENTIA AND
THEIR FAMILIES
• Use IHF existing education and resources
• Introduce content of 3 guidance documents
• Facilitating discussions on future and end of life care
• Advance care planning &Advance health care directives
• Loss and grief
Underpinned by HSE Consent Policy and Ass Dec Mak
Capacity Act

23. Education and Training
http://hospicefoundation.ie/education-training-2/staff-training/

24. Guidance Documents
2:
Advance
care
Planning
3:
Loss and
grief

27. Public Consultation in March

28. Advance Care Planning and people with
dementia GUIDANCE DOCUMENT
• It is a choice
• People with dementia can participate in the advance care
planning process
• Advance care planning is a process - more than one
discussion.
• Decisions recorded should be reviewed every three months.
• An ACP plan is a record of discussion in relation to a persons
will and preferences about future care if they lose their capacity
to speak for themselves.
• As well as clinical issues (CPR, Antibiotics), it can also cover
environmental comforts, spiritual issues, place of care, holistic
needs.
• Help family member know wishes and preferences
• Reduce anxiety for person with dementia and family
• Enables the person focus on living well

30. Advance Healthcare Directive and people
with dementia
•An advance healthcare directive is the
only place where a person can record
their request to refuse treatment - this
is legally binding.
www.hospicefoundation.ie

31. Public Consultation in March

32. Loss and Grief related to dementia.
• Loss and grief are
fundamental parts of the
dementia experience
• Staff need to
• consider how loss and grief
they encounter at works
affects them
• develop knowledge and
understanding about loss
and grief
• Recognise and respond to
loss and grief when they
encounter it
Ambiguous loss
Disenfranchised
grief
Anticipatory
loss

33. Loss and Grief in Dementia
Supporting people
with dementia
experiencing loss
and grief
Supporting
families
Supporting
staff
Respond to loss
and grief

34. 1. What do people with dementia say about end of
life care
2. What are the palliative and end of life care needs
of people with dementia
3. How the palliative approach can be incorporated
as part of routine care for people with dementia
and their families
4. Understanding
how people with
dementia can be
supported to die at
home

35. 4. HOW PEOPLE WITH DEMENTIA CAN BE
SUPPORTED TO DIE AT HOME
0
20
40
60
80
100
120
140
2007 2008 2009 2010 2011 2012 2013 2014 2015
No. of dementia referrals

36. Audit on Dementia Referrals
Supplementary information gathered on 52 referrals of people with a
diagnosis of dementia who were referred to the NNC service 2015 July -
Dec:
• Demographics – gender, age, address, living situation, length of time living
with dementia, co-morbidities, presence of an ACP
• Length of time involved with SPCT
• Reason for referral
• Supports – informal and formal
• Care in the home provided by family versus homecare packages/ other formal
supports
What are the key components of care
which enable a person with dementia to
die at home in Ireland?

37. Profile of people with dementia
dying at home (N 52)
• 74% female
• average age 81.3
• 73% own home – 23% family carer’s home
• Many family members living in close proximity
• 76% families providing 24hr care
co-morbidities:
• 28% no other
• 19% had one
• 17% had 4
• 6% had 7+
plan in place
• 50% of cases, had plan in place to die at home.

38. Formal Supports
Formal
supports
available to
the person
GP – 40%
home
visits
Homecare
Packages
89%
OOH
providers
61%
HCPs
31%
PHN
77%
Supports
from
dementia
specialist
s

39. 1. What do people with dementia
say about end of life care
2. What are the palliative and end
of life care needs of people with
dementia
3. How the palliative approach can
be incorporated as part of
routine care for people with
dementia and their families
4. Understanding how people with
dementia can be supported to
die at home
Its good to talk
Use natural
moments
Individual approach
Loss and grief
Future planning
Symptom control
Staff upskill to
assess and
communicate to
adapt to changes
Access to family,
home care packages
GP Home Visits
Plan ahead

40. Acknowledgements
More
information
For more information
Marie Lynch
Marie.lynch@hospicefoundation.ie
Ph: 01 673 0063
www.hospicefoundation.ie
Go to Palliative Care for All Page
 People with dementia and
carers who have
contributed and advised
IHF
 IHF Changing Minds Team
 Project Advisory and
Governance Groups
 Atlantic Philanthropies
Queries

41. Still Kathy