End of life care for people with
dementia: complexity and decision-
making
Dr Nathan Davies
Research Department of Primary Care and Population Health, UCL
Centre for Dementia Palliative Care Research, Marie Curie Palliative Care
Research Department, UCL
@NathanDavies50
@Caps_UCL @MCPCRD
• Overview of dementia and end of life care
• Some of the challenges families and professionals
face
• 2 Streams of work:
– Supporting professionals
• Rules of thumb
• Comfort on the acute hospital ward
– Supporting family carers
• Online support for family carers
• Decision making support for family carers
What’s on today?
Dementia worldwide and the UK
• 850,000 people with dementia in the UK
• 700,000 family or friends caring for someone with
dementia
• 115 million people with dementia by 2050
• Numbers of those with dementia and two or more
other comorbidities will more than double by 2025
and then increase further by 2035
Kingston, A., Comas-Herrera, A., & Jagger, C. (2018). Forecasting the care needs of the older population in England over the next 20 years: estimates from the Population Ageing and
Care Simulation (PACSim) modelling study. The Lancet Public Health.
Lewis et al (2014). Trajectory of Dementia in the UK – Making a Difference, report produced the Office of Health Economics for Alzheimer’s Research UK
Prince, M et al. (2014) Dementia UK: Update Second Edition report produced by King’s College London and the London School of Economics for the Alzheimer’s Society
Prince, M et al (2015). World Alzheimer’s Report 2015, The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International
Issues, dilemmas, complications and
decisions
• Comorbidities
• Eating and drinking
difficulties
• Breathing difficulties
• Agitation and
restlessness
• Increased infections
• Pain
• Incontinence
Davies N, Iliffe S. End of life care—why those with dementia have different needs. BMJ. 2016;353(i2171).
Guidelines • NICE: Improving Supportive and Palliative Care
for adults with cancer.
-cancer specific
-did not address the needs of people with
dementia
• NICE: Care of dying Adults in the Last Days of
Life.
-care in the last 2-3 days of life
• NICE: Dementia: assessment, management and
support for people living with dementia and their
carer
• What’s the alternative to another pathway or
another guideline?
• Are rules of thumb the answer?
*Taken with permission from stroke.org.uk
MethodsCo-design approach with three phases:
Phase 1) Literature review and previous interviews
Phase 2) Groups interviews and individual interviews
with practitioners and family carers.
Phase 3) Field testing in 5 sites including:
– 1 general practice
– 2 palliative care community teams
– 1 complex care ward
– 1 community nursing team
Refined through a series of workshops with an expert user
group, using nominal group in an iterative co-design
process
Davies, N., Mathew, R., Wilcock, J., Manthorpe, J., Sampson, E. L., Lamahewa, K. & Iliffe, S. (2016). A co-design process developing heuristics for practitioners providing end of life care for people with dementia. BMC Palliative Care, 15.
Davies, N., Rait, G., Maio, L., & Iliffe, S. (2016). Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study. Palliative Medicine. DOI: 10.1177/0269216316673552
Key Decisions
1. Swallowing and eating difficulties
2. Agitation and restlessness
3. Reviewing treatment and interventions at the end
of life
4. Providing routine care
Davies, N., Mathew, R., Wilcock, J., Manthorpe, J., Sampson, E.L., Lamahewa, K., Iliffe, S. (2016). A co-design process developing heuristics for practitioners providing end-of-life-care for people with dementia. BMC Palliative Care, 15(68).
1Don’t let eating/swallowing problems come as a surprise (ensure conversation has occurred with the person with dementia and family or advocate early, around the time of diagnosis). Consider advance care planning (ACP).
Is dementia the cause of the eating/ swallowing difficulties?
*‘Comfort feeding only’
**Stop feeding, promptlyconsider if there is a reversible
cause?
Yes
***Discuss specialist care
Convert oral medication to liquid/injectable form
May need specialist input. E.g. SALT
NoYes
No
‘Comfort feeding only’*
2
Eating/swallowing difficulties
*comfort feeding may carry associated risks of aspiration**Closely observe all intake particularly if changes to swallow function are suspected*** Consider appropriateness on individual basis
If it is an emergency follow principles of first aid
Copyright © 2016 Nathan Davies and Steve Iliffe
Agitation/restlessness
Look for an underlying cause (don’t always attribute it to the dementia)
Is there an environmental/social cause?
Is there a physical cause?
No identifiable cause o Is there a non-drug treatment?
( i.e. music therapy, massage, aromatherapy)o Trial of pain reliefo Seek specialist helpo Trial of antipsychotic medication (after
discussion with family/advocate)
What has changed?(speak with and seek help from families/advocate)
Check the health and wellbeing of the carer
Consider throughout is the individual a risk to themselves or others
around them?
Copyright © 2016 Nathan Davies and Steve Iliffe
Is the current treatment/intervention still needed?
Yes No
Stop treatments and interventions not contributing to comfort or having positive impact on quality of life
Review comfort and quality of life after any change in treatment; be prepared to restarttreatments (as it is not always clear beforehand if something is having an impact on comfort and quality of life)
Continue with current regime
2
Remember discuss with family/advocate
Reviewing treatment and interventions at the end of life
Towards the end of life, only continue or initiate medication or interventions that are likely to maintain comfort or have a positive impact on quality of life
1
Copyright © 2016 Nathan Davies and Steve
Iliffe
Make adaptations
Is routine care causing distress?
Can the way that care is delivered be adapted to better suit the persons’ needs?
Yes No
Provide routine care with the goal of maintaining comfort and dignity
Yes No
Try again later
Is this a recurring issue? If yes go to rule 1
Discuss with family or advocate regarding what is an acceptable level of care and how best to provide it?
Providing routine care at the end of life
2
1
3Consider referring to
rules of thumb for agitation and restlessness
Copyright © 2016 Nathan Davies and Steve
Iliffe
Evaluation
• Synthesis of best practice
– “We already do this”
– Years of experience represented in simple format
• Provided a structure and broke down complexity
• Provided authority and permission
• Offered a source of reassurance and validation
• Appreciated the simplicity
What’s next for this work?
• Can we use rules-of-thumn in the acute hospital
ward to help maximise comfort and distress?
• How can we use these principles to support family
carers?
Supporting family
carers – online support
Care for people with Dementia given by Relatives at the
End of life: CADRE Study
• What do carers struggle with towards end of life or
need more support with? Is there a role for the
internet?
– Expectations and planning for death and dying
– Shrinking social network
– Honest open discussions of taboo topics
– Engagement with professionals
– Co-ordination of services and support
What do carers want – can we do it online?
• Need for more information and managing expectations
• Financial implications and consequences
• Medical decline – symptoms
• Local services
• A source of reassurance
• Planning for the future
• What happens when someone actually dies?
• Opportunity to talk to someone
• Engagement beyond the computer screen
• But a platform to find someone (not online dating)
• Sometimes a preference for professional facilitation
Hopwood J, Rait G, Walters K, Iliffe S, Ross J, Davies N. (2018). A systematic review of digital interventions aimed at supporting family carers of people with dementia. Journal of Medical Internet Research, 20 (6).
Home > End of life > Information
Supporting someone at the end of life
Introduction to the page, overview.
Watch xxx’s story
Xxx has been caring for…..
Home >
Video ofcarer
PlanningPractical information including
Lasting Power of Attorney, Do Not
Resuscitate, Advance Care Planning
and different types of care.
What can I expect towards the
end of life?
Information on common symptoms
and challenges faced at the end of life.
Home
Preparing for Death
Advice on planning a funeral and what
happens when someone dies.
Day to day caring
Coordinating different services and
the day to day challenges of
supporting someone at the end of life.
Planning
Financial information
Information on benefits, transport,
wills and settling an estate.
Looking after
yourselfDay to day
of caring
What can I expect
towards the end of life?
Preparing
for deathFinancial
information
Talk to a
professional
Looking after yourself
Find information here on ways to
manage stress, feelings of guilt, anger
and grief.
Communication
Communication tips and activity ideas.
Talk to a professional
Details of our helpline to speak to a
professional.
Where can I get support?Details of other useful services and
support in your area.
Chat to
a carer
Family relationships and social
networksCommunicating with family members
and changes to social networks
Chat and support from a carer
Log in to our private section to speak
to other carers.
Supporting family carers
making decisions
Making decisions for others
• Many people with dementia reach the end of
life without a care plan
• Often people with dementia, families and
professionals are not ready to have conversations
about the future
• Decisions are left to family (or friends) carers
20
• Carers are left with difficult decisions as
proxy
“From my contact with other carers I think making
decisions for someone you love is one of the
hardest things to bear” (Lay reviewer 15)
21
How can we best support carers? A Decision
aid?
• A communication tool
• Designed to help people make specific and
deliberated choices
• Providing information on the options and
outcomes
• May include:
– information on the disease/condition
– health risk factors
– information on others’ opinions
– guidance or coaching 22
WS1
Identify existing
decision aids
WS2
What are the difficult
decisions to make
and how should they
be made?
WS3
Co-design
development of a
decision aid
People with
dementia and
family carers
Practitioners,
carer
organisations
23
Families significant decisions
• Medical care – how do you enough is enough?
• Social care – when do we need more support?
• Residential care – when is it time and can I do
this?
• How do I keep them safe?
• When do we have these discussions?
Summing up
• Both families and professionals which are faced
with complex, significant decisions
• Breaking down decisions, aids clarity and care
• Supporting carers, supports and helps the person
with dementia and care services
• Need to make use of all types of technologies to
help provide care throughout dementia course not
just end of life
NathanDavies50
Caps_UCL
This research was supported by funding from the Alzheimer’s Society grant number AS-PG-2013-026 and by the Marie Curie
Research Programme, grant C52233/A18873, a Fellowship award from Alzheimer’s Society, UK (AS-JF-16b-012) and the NIHR
School for Primary Care Research The views expressed here are those of the authors and not of the Alzheimer’s Society or Marie
Curie. The views expressed are those of the authors and not necessarily those of the NIHR, the NHS or the Department of Health.