The Clinical Course of Advanced Dementia

KP Edmonds MDJournal Club Presentation

The ArticleMitchell, SL et al (2009). The Clinical Course of Advanced Dementia. NEJM. 361 (16). 1529-1538.

Objectives

Identify the clinical features of end-stage dementia.

Understand the concept of dementia as a terminal illness.

Describe the odds ratio in regards to medical statistics.

The Background

17-25 million worldwide

5 million US (13 million by 2050)

5% of those >65yo 20% of those >80yo

26% women 21% men

50% Alzheimer type

The Question

Prospective look at the clinical course: Complications Physical suffering Burdensome

interventions What are the realistic

expectations for patient, family, provider?

The Authors

9 identified authors

6 academic institutions

No reported conflicts

Funding Grant (NIA) Mid-career Award

The Study Type

18 month Prospective Case-control Multi-center Data culled from the

CASCADE study

The Study Participants

22 facilities with >60 beds

Within 60 miles of Boston

Initial factors Age 60+ Cognitive

Performance Scale Score

Length of stay >30 days

The Study Participants

Secondary factors Cognitive impairment Global Deterioration

Scale score = 7 English-speaking

health care proxy

The Study Data

Via Chart reviews Interviews of nurses Quarterly physical

exams SES Health Status Clinical Complications Distressing symptoms Intervention Use of hospice

The Results: Participant Characteristics

The Results:Participant Course

55% died 94% of deaths

were in nursing home

Probabilities: 25% death within 6

mos 41% pneumonia 53% febrile episode 86% eating problem

Figure 1

The Results:Survival Probability

Figure 2a

The Results:Survival Probability

Figure 2b

The Results:Survival Probability

Figure 2c

The Results:Problems in the Last 3 Months

Pneumonia in 37% Fever in 32% Eating problems in

90%

The Results:Symptoms in the Last 3 Months

Figure 3

The Results:Interventions in the Last 3 Months

40% received one “burdensome” intervention 29% received

parenteral therapy 12% hospitalized 3% taken to ED 7% tube fed

The Results:Hospice in the Last 3 Months

30% referred 26% at 0-7 days

before death 26% at >181 days

before death

The Results:Health Care Proxy Perspective

96% believed comfort to be the primary goal

20% believed patient had <6 months

18% reported receiving prognosis info from a physician

32% had been counseled by a physician about expected course

The Results:Proxy Beliefs and the Last 3 Months

If proxies: Believed life

expectancy < 6 months

Understood clinical course of dementia

Then patients less likely to undergo “burdensome” intervention

Odds Ratio 0.12 (95% CI 0.04-0.37)

Mandatory Tangent:The Odds Ratio

Compares the probability of an event between two groups 1 = same odds >1 greater odds in group

1 <1 greater odds in group

2 Ours is 0.12 so:

< 1 Greater odds of

intervention in group where proxies less aware

Limitations

Geographically restricted

Relatively large institutions

Possible documentation inaccuracy

Not an inception cohort

The Upshot

Dementia is a terminal illness 25% 6 month mortality

at end-stage 1.3 year median

survival Most deaths not due

to acute events (such as MI)

We must counsel our patients on what to expect!

The Questions…

References

Melzer D, Ely M, Brayne C. Cognitive impairment in elderly people: population based estimated of future in England, Scotland, Wales. BMJ 1997; 315:462.

Mitchell SL, Kiely DK, Jones RN, Prigerson H, Volicer L, Teno JM. Advanced dementia research in the nursing home: the CASCADE study. Alzheimer Dis Assoc Disord 2006;20:166-75.

Mitchell, SL et al (2009). The Clinical Course of Advanced Dementia. NEJM. 361 (16). 1529-1538.