1. Anticipatory Care Planning in Dementia
Dr Rebecca Bancroft
Consultant Geriatrician

2. 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

3. 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

4. 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

5. What is ACP? 5

6. 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 6

7. 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

8. End of Life 1 GMC Focus of care switches to comfort
‘entering the last year of life’
Focus of care switches to comfort
Avoidance of burdensome interventions
Unnecessary medications
Hospital admissions

9. 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 9

10. The key to reducing burdensome interventions
Why is ACP needed?
The key to reducing burdensome interventions 10

11. Kutner 1969
Avoiding ‘heroic treatment’ in the face of a ‘hopeless prognosis’

12. 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 12

13. 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 13

14. Dementia as a life shortening illness

15. Prognosis 1 Mean survival is 4.5 years
Range 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

16. 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.

18. 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

19. 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):

20. Why is identifying Advanced Dementia so important?

21. To ensure that all people with dementia receive good End of Life care

22. 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

23. Current Challenges 2 Determining when is ‘end of life’?
Difficulty anticipating death
Long illness trajectory
Dementia not seen as a life shortening illness

24. Advanced Dementia
The last year of life 24

25. 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)

26. 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

27. Advanced Dementia 3 Common complications include1:
Pneumonia (41%)
Febrile episodes (53%)
Eating problems (86%)
All are predictors for high 6 month mortality (~50%)
Mitchell S et al. NEJM 2009; 361 (16) 1529 – 1538. 27

28. Misconceptions about Dementia and dying28

29. Common Misconceptions
Cardio-pulmonary resuscitation
Artificial Nutrition and hydration
Antibiotic therapy
Transfer to an acute hospital 29

30. 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:
2. Schonwetter et al. J Am Geriatr Soc 1996; 44(8): 30

31. 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 % was presented
5% desired CPR when best success rate in the presence of a chronic illness was presented as 0 – 5% 31

32. 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):
2. Gillick MR. Sounding board - Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000; 342(3): 32

33. 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): 33 33

34. 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): 34

35. 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 35

36. 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): 36

37. 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):
2. Thompson et al. J Am Board Fam Pract 1997; 10(2):82-87. 37

38. 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 ; 164: 321 – 326. 38

39. Stages of ACP

40. Stages 1 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

41. Stages 2 1. Identification 2. Assessment
GSF prognostic indicator guidance
Increasing frailty
Change in condition including weight loss, recent hospital admission
2. Assessment
Holistic CGA approach
Capacity assessment

42. 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

43. Stages 4 4. Formulation of the ACP document 5. Medication review
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

44. 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

45. 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

46. 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%

47. ‘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:

48. 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

49. Therefore………………..
Reversible risk factors should be looked for in all residents
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
SIMPLES!