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Anticipatory Care Planning in
Dementia
Dr Rebecca Bancroft
Consultant Geriatrician
Learning Objectives
Improve understanding of Dementia as a
life limiting illness
 Recognise the cardinal features of
Advanced Dementia
 Identify common burdensome
interventions often experienced by
individuals with Advanced Dementia
 Learn a practical approach to ACP

Case
80 year man
 Admitted from home with poor oral intake
 Known Frontal lobe dementia
 Inpatient 14 days
 Diagnosis “progression of dementia’
 Discharged to EMI NH
 Readmitted 7 days later

– Poor oral intake

Diagnosed dehydration
Case continued
Would not tolerate IV line
 Transferred back to care home with
subcut fluids
 NO ACP at any stage
 Review by me 3/7

– ACP in place
– Wife relieved
– Care Home staff reassured
– GP confident to start LCP in near future
What is ACP?

Definition:
‘A process of discussion between an individual
and their caregivers (and often family) about
their wishes regarding their future care’1
1. NEOLCP. ACP: A guide for health and social care staff. London, 2007
Care planning vs ACP
Care planning refers to care of people with
and without capacity
 ACP refers to an advanced process of
decision making for people WITH capacity
 If capacity is absent care planning IS still
possible using Best Interests

– Consultation of close family or friends
– May need IMCA
End of Life 1

GMC
– ‘entering the last year of life’

Focus of care switches to comfort

Avoidance of burdensome interventions
– Unnecessary medications
– Hospital admissions
End of Life 2

Common burdensome interventions
include:
– Hospital admission / attendance
 70% due to pneumonia
– Tube feeding
– IV therapy

Much less likely to occur if HCP and
patients’ proxies have good understanding
of the trajectory of the illness
Why is ACP needed?
The key to reducing burdensome
interventions

Kutner 1969
– Avoiding ‘heroic treatment’ in the face of a
‘hopeless prognosis’
Why?
60 – 90% of the general public is
supportive of ACP
 Only 8% have any form of document in
place

– 10 – 20% in US, Japan, Canada and Germany

Most healthcare professionals have a
positive attitude to ACP
– Doctors tend to have most reservations about
validity and applicability
Why?
A means of documenting peoples’ views
and wishes
 Voluntary process

– Some people do not want to discuss EOL

Informs and empowers people to make
decisions about their current and future
treatment
Dementia as a life shortening
illness
Prognosis 1

Mean survival is 4.5 years
– Range 3.8 - 10.7 years
– NB: date of diagnosis different to date of
onset
Longer survival with younger age of onset
 Women survive longer than men
 Majority of patients with Dementia enter
24 hour care before they die

– ~76%
– On average 18 months
Symptom progression in Alzheimer's disease. Adapted from Feldman et al3
Burns, A. et al. BMJ 2009;338:b158
Copyright ©2009 BMJ Publishing Group Ltd.
Prognosis 2
 What
is the cause of death in patients with
dementia?
– Death due to unrelated cause
– Death directly from Dementia
– Death as a result of interaction between
dementia and other disease
Prognosis 3

We are very poor at estimating prognosis
in patients with dementia1
– 1% NH residents with dementia thought to
have prognosis < 6 months
– 70% died within 6 months

Easily identifiable markers of advanced
dementia
– Aids prognostication and decision making
1. Mitchell et al. Arch Intern Med 2004; 164(3):321-326.
Why is identifying Advanced
Dementia so important?
To ensure that all people with dementia
receive good End of Life care
Current Challenges 1

Under diagnosis of dementia
– Only 1/3rd people with dementia have any
specialist healthcare assessment or diagnosis
 Lack of identification
 Stigma

When they do it is often:
– Late in the progression of the illness
– In crisis
– Too late to enable effective interventions
Current Challenges 2

Determining when is ‘end of life’?
– Difficulty anticipating death
– Long illness trajectory
– Dementia not seen as a life shortening illness
Advanced Dementia
The last year of life
Advanced Dementia 1

Indicators include (ALL of):
– Unable to walk without assistance
– Incontinence
– No consistently meaningful verbal
communication
– Unable to dress without assistance
– Reduced ability to perform activities of living
Gold Standards Framework (2008)
Advanced Dementia 2

Plus any of the following:
– 10% weight loss in previous 6 months without
other cause
– severe pressure ulcers
– reduced oral intake / weight loss
– aspiration pneumonia

Prognosis at this stage 6 – 12 months
Advanced Dementia 3

Common complications include1:
– Pneumonia (41%)
– Febrile episodes (53%)
– Eating problems (86%)

All are predictors for high 6 month
mortality (~50%)
1.
Mitchell S et al. NEJM 2009; 361 (16) 1529 – 1538.
Misconceptions about Dementia
and dying
Common Misconceptions
1.
Cardio-pulmonary resuscitation
2.
Artificial Nutrition and hydration
3.
Antibiotic therapy
4.
Transfer to an acute hospital
Cardio-Pulmonary Resuscitation
 Out
of hospital cardiac arrest in a NH
– survival to discharge success is 0 - 5%1
 In
hospital CPR is 3 times less successful if
dementia is present
– similar to metastatic cancer
~
95% of people would not want CPR if they had
advanced dementia2
1. Zweig. Archives of Family Medicine 1997; 6: 4249 - 4290.
2. Schonwetter et al. J Am Geriatr Soc 1996; 44(8): 954 - 958.
Older Peoples’ views
 American
study in a retirement village
– 41% residents opted for CPR before learning
about survival statistics
– 22% desired CPR when best success rate of
10 - 17% was presented
– 5% desired CPR when best success rate in
the presence of a chronic illness was
presented as 0 – 5%
Artificial Nutrition 1


No RCTs on the effectiveness of tube feeding
However, we do know that tube feeding in
dementia does not1,2:
–
Prevent aspiration pneumonia

–
–
–
–
–
–
may increase its incidence
Prevent the consequences of malnutrition
Increase survival
Prevent or improve pressure ulcers
Reduce the risk of infection
Improve functional status
Improve comfort of the patient
1. Finucane TE et al. Tube feeding in patients with advanced dementia: A review of the evidence. JAMA 1999; 282(14):1365-1370.
2. Gillick MR. Sounding board - Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000; 342(3):206-210.
Artificial Nutrition 2
 Murphy
et al1
– Median survival 59 days in patients who had
PEG (n=23)
– 60 days in patients who did not undergo PEG
placement (n= 18)
1. Murphy et al. Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia. Arch
Intern Med 2003; 163(11):1351-1353.
Antibiotic Therapy
 Effective
in single episodes of intercurrent
infection in NH residents with dementia
– Limited by recurrence of infections in
advanced dementia
 Recurrent
antibiotic therapy does not
prolong survival in residents with severe
dementia1
– unable to communicate and unable to walk alone
/ with assistance
1. Van der Steen et al. J Am Geriatr Soc 2002; 50(3):439-448.
Transfer to an Acute Hospital 1
Patients with Dementia are 5x more likely
to die in hospital
 Significant negative effects of hospital
admission

– Falls
– Delirium
– HAI
– Pressure sores
– Weight loss
Transfer to an Acute Hospital 2
 Transfer
from NH to hospital results in decline of
psycho-physiological functioning including1:
–
–
–
–
Mobility and transfers
Toileting
Feeding
Grooming
 None
of these functions improve significantly
back to baseline at discharge
1. Volicer et al. Neurologic Clinics of North America 2001; 19(4):867-885.
Transfer to an Acute Hospital 3
 Evidence
that hospitalisation is not necessary
for treatment of pneumonia in NH residents
– Immediate survival and mortality rates similar for
treatment provided in NH or hospital1
– Long-term outcomes better in residents treated in
the NH2
 6 week mortality
– 39.5 % in hospitalized
– 18.7% in non-hospitalized residents
– no significant differences between the 2 groups before
diagnosis
1. Fried et al. J Gen Int Med 1995; 10(5):246-250.
2. Thompson et al. J Am Board Fam Pract 1997; 10(2):82-87.
However……………………………..

Residents dying in NH with advanced
dementia1:
– 8x less likely to have DNR order than those
with terminal cancer
– Few (1.5%) have advanced directives to avoid
hospital
 Comfort is main goal
– Much more likely to undergo burdensome
interventions
 25% PEG tube (cf 5% cancer)
1. Mitchell et al Arch Intern Med. 2004; 164: 321 – 326.
Stages of ACP
Stages 1
1.
2.
3.
4.
5.
6.
Identification of residents that would
benefit from ACP
Assessment including capacity
Discussion with resident and / or family
Formulation of the ACP document
Medication review
Regular clinical review
Stages 2
1. Identification
– GSF prognostic indicator guidance
– Increasing frailty
– Change in condition including weight loss,
recent hospital admission
2. Assessment
– Holistic CGA approach
– Capacity assessment
Stages 3
3. Discussion with resident and / or family
– Prognosis
– Expected clinical course including predictable
complications eg feeding issues, pneumonia
– Unexpected complications and possible
outcomes eg fall with fracture and hospital
admission for pain control
Stages 4
4. Formulation of the ACP document
– Shared with ALL necessary agencies
5. Medication review
– Stop all meds where time to benefit is less
than prognosis
 Bisphosphonates, statins, BP meds, many others
Stages 5
6. Regular clinical review
– Monthly review of general condition eg
Weight / MUST, symptoms, skin care, hospital
attendances, family concerns
– Annual review if still alive – validity and
applicability
My role
Meet with patient, relative, Care Home
staff and relatives
 The care plan:

– Physical and functional assessment
– Capacity assessment
– Robust care plan, focused on timely
intervention
– Good palliation within the Care Home
– Does not preclude admission if the
unexpected happens
Outcomes to Date

1,245 ACPs since November 2009
– 52% due to Advanced Dementia
– Majority of the rest due to increasing frailty
– 854 have died
 839 in the Care Home
– Reduction in deaths in hospital within 24
hours of admission reduced by 52%
 27% to 13%
‘New’ National campaign
‘Find your 1% Campaign’
 New prognostic indicator guidance:

– Surprise question
– General indicators of decline
 Function, recurrent admission, entry into NH
– Disease specific indicators of decline
 COPD, CCF, Dementia

Available at:
http://www.endoflifecareforadults.nhs.uk/assets/downloads/EoLCNe
wsletterSeptember2011v4.pdf
Summary





Dementia is a terminal disease with a long
trajectory
There are easily identifiable markers of disease
progression in Dementia
We are currently poor at identifying people with
Advanced Dementia
It is vital that we ensure that people with
Dementia receive good End of Life care
The key to reducing burdensome interventions is
Advanced Care Planning
Therefore………………..

Reversible risk factors should be looked
for in all residents
SIMPLES!
– Do something to reverse them
– Or modify the associated risk
– For ALL factors

Then when people fall, use this as a red
flag to look for and modify those same
factors all over again