KP Edmonds MD
Journal Club Presentation
Mitchell, SL et al (2009). The Clinical Course of Advanced Dementia. NEJM.
361 (16). 1529-1538.




Identify the clinical features of end-stage
dementia.
Understand the concept of dementia as a
terminal illness.
Des...
17-25 million worldwide
5 million US (13 million
by 2050)
 5% of those >65yo
 20% of those >80yo



 26% women
 21% ...


Prospective look at the
clinical course:
 Complications
 Physical suffering
 Burdensome interventions



What are t...





9 identified authors
6 academic institutions
No reported conflicts
Funding
 Grant (NIA)
 Mid-career Award






18 month
Prospective
Case-control
Multi-center
Data culled from the
CASCADE study
22 facilities with >60
beds
 Within 60 miles of
Boston
 Initial factors


 Age 60+
 Cognitive Performance

Scale Scor...


Secondary factors
 Cognitive impairment
 Global Deterioration Scale

score = 7
 English-speaking health
care proxy


Via
 Chart reviews
 Interviews of nurses
 Quarterly physical exams








SES
Health Status
Clinical Complica...
55% died
94% of deaths were in
nursing home
 Probabilities:



 25% death within 6 mos
 41% pneumonia
 53% febrile e...
Figure 2a
Figure 2b
Figure 2c





Pneumonia in 37%
Fever in 32%
Eating problems in 90%
Figure 3


40% received one
“burdensome”
intervention
 29% received

parenteral therapy
 12% hospitalized
 3% taken to ED
 7% ...


30% referred
 26% at 0-7 days before

death
 26% at >181 days before
death







96% believed comfort to
be the primary goal
20% believed patient
had <6 months
18% reported receiving
prognosis...


If proxies:
 Believed life expectancy

< 6 months
 Understood clinical
course of dementia

Then patients less
likely ...


Compares the
probability of an event
between two groups
 1 = same odds
 >1 greater odds in group 1
 <1 greater odds ...
Geographically restricted
Relatively large
institutions
 Possible documentation
inaccuracy
 Not an inception cohort




Dementia is a terminal
illness
 25% 6 month mortality

at end-stage
 1.3 year median survival

Most deaths not due to...






Melzer D, Ely M, Brayne C. Cognitive
impairment in elderly people:
population based estimated of future in
Englan...
The Clinical Course of Advanced Dementia
The Clinical Course of Advanced Dementia
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The Clinical Course of Advanced Dementia

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An overview of the clinical course of advanced dementia with emphasis on predictors of mortality. Geared toward the office-based physician.

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  • Degenerative disorders: Alzheimer’s disease (AD); fronto-temporal dementias (FTD); dementia with Lewy bodies (DLB); Parkinson disease dementia; Huntington’s disease; progressive supranuclear palsy.Vascular causes: multi-infarct dementia (MID); lacunar infarcts; Binswanger’s disease; cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL); vasculitis (eg, lupus erythematosus).Trauma: major head injury; subdural haematoma; boxing.Intracranial tumours: primary tumours; metastatic tumours.Infection: bacterial (eg, Spirochetal spp. – causing Lyme disease and syphilis); fungal (eg, Cryptococcus); viral (eg, subacutesclerosingpanencephalitis [SSPE]; progressive multifocal leukoencephalopathy; post-encephalitic HIV). Other infectious agents (eg, Creutzfeldt-Jakob disease [CJD], variant CJD [vCJD]; neurocysticercosis; tuberculosis).Hydrostatic causes: hydrocephalus (obstructive or communicating); normal pressure hydrocephalus (NPH).Toxic, endocrine and metabolic causes: heavy metals; drug intoxication; hypothyroidism; hypercalcaemia; B12 and folate deficiencies; hepatic and renal failure; paraneoplastic/limbic encephalitis; inherited metabolic disorders (eg, Wilson’s disease, leukodystrophies).Anoxia: post-cardiac arrest; carbon monoxide poisoning.
  • “Our current understanding of end-stage dementia is based on findings from retrospective studies, 3-7 cross-sectional studies,8 or investigations of hospitalized patients.9-12 The clinical course of advanced dementia has not been described in a rigorous, prospective manner.”
  • Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study. CASCADE is a cohort, but this study was made by carving out a case-control study from the numbers. Prospective cohort study of nursing home residents with advanced dementia and their families.CASCADE: The study’s overriding goal was to address major gaps in knowledge concerning care for patients with advanced dementia.IRB: Hebrew SeniorLifeA prospective cohort study is a cohort study that follows over time a group of similar individuals (&quot;cohort&quot;) who differ with respect to certain factors under study, in order to determine how these factors affect rates of a certain outcome.A cohort is a group of people who share a common characteristic or experience within a defined period.The comparison group may besubgroups within the cohort may be compared with each other.
  • The Cognitive Performance Scale groups residents into categories ranging from intact cognition (0) to very severe impairment (6). A score of 5 corresponds to a mean score of 5 +/- 5 on the MMSE.
  • At stage 7 on the Global Deterioration Scale, patients have profound cognitive deficits (inability to recognize family members), minimal verbal communication, total functional dependence, incontinence of urine and stool, and inability to ambulate independently.
  • SES: age, sex, length of nursing home stay, race or ethnic group, marital status, and whether the resident lived in a special care unit for dementia.Health status: underlying cause of dementia documented in the chart (Alzheimer’s disease, vascular dementia, or another cause), functional and cognitive status, and coexisting conditions. Functional status: Bedford Alzheimer’s Nursing Severity Subscale. Cognitive status: Test for Severe Impairment.Clinical Complications: suspected pneumonia (Doc, NP or PA documentation), febrile episodes(oral, ≥37.8°C [100°F]; rectal, ≥38.3°C [101°F]; or axillary, ≥37.2°C [99°F]) and timing at least once within a 7-day period, with more than one occurrence of fever recorded within 7 days considered to be a single episode), eating problems (weight loss, swallowing or chewing problems, refusal to eat or drink, suspected dehydration, and persistently reduced oral intake), and other sentinel events.Distressing symptoms: Pain, dyspnea, aspiration, agitation, decubitus ulcers.Burdensome interventions: parenteral therapy, hospitalizations, ED visits, tube feeding.
  • Among the 1763 nursing home residents who met the study’s screening criteria, 572 (32.4%) met all the eligibility criteria. Among those who were eligible, 323 residents with advanced dementia (56.5%) and their health care proxies were recruited.
  • Adjusted probability of death:47% after PNA45% after fever39% after eating problemSentinel events:Seizures (33%)GI bleed (26%)Hip Fx (7%)Stroke (7%)PE (2%)MI (2%)
  • Sentinel events rarely precipitated death — only seven events occurred during the last 3 months of life among residents who died: two strokes, two seizures, one hip fracture, one episode of gastrointestinal bleeding, and one myocardial infarction.
  • Reasons for hospitalization:70% PNA14% other infxn9% CHF5% hip Fx5% dehydration
  • OR approaches RR as long as the measured outcome is rare.1/10 the odds of receiving a burdensome intervention as those in the other group. Odds: probability of an event occurring vs. no occurringOR needs to be used when the numbers have been adjusted based upon the outcome (rather than exposure) as in a case-control study or when logistics regression is used to adjust for cofounders. I.e. I can calculate the probability of intervention in dementia but not the probability of dementia in intervention. Relative risk requires me to compare both probabilities.
  • Only &gt;60 beds within 60 miles of Boston.Data culled from charts and nursing notes.Not an inception cohort so survival numbers are not relative to onset of disease (nor are they necessarily relative to the onset of severe dementia as defined by this study). Can’t tell when the participants met the criteria.
  • The Clinical Course of Advanced Dementia

    1. 1. KP Edmonds MD Journal Club Presentation
    2. 2. Mitchell, SL et al (2009). The Clinical Course of Advanced Dementia. NEJM. 361 (16). 1529-1538.
    3. 3.    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.
    4. 4. 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
    5. 5.  Prospective look at the clinical course:  Complications  Physical suffering  Burdensome interventions  What are the realistic expectations for patient, family, provider?
    6. 6.     9 identified authors 6 academic institutions No reported conflicts Funding  Grant (NIA)  Mid-career Award
    7. 7.      18 month Prospective Case-control Multi-center Data culled from the CASCADE study
    8. 8. 22 facilities with >60 beds  Within 60 miles of Boston  Initial factors   Age 60+  Cognitive Performance Scale Score  Length of stay >30 days
    9. 9.  Secondary factors  Cognitive impairment  Global Deterioration Scale score = 7  English-speaking health care proxy
    10. 10.  Via  Chart reviews  Interviews of nurses  Quarterly physical exams       SES Health Status Clinical Complications Distressing symptoms Intervention Use of hospice
    11. 11. 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
    12. 12. Figure 2a
    13. 13. Figure 2b
    14. 14. Figure 2c
    15. 15.    Pneumonia in 37% Fever in 32% Eating problems in 90%
    16. 16. Figure 3
    17. 17.  40% received one “burdensome” intervention  29% received parenteral therapy  12% hospitalized  3% taken to ED  7% tube fed
    18. 18.  30% referred  26% at 0-7 days before death  26% at >181 days before death
    19. 19.     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
    20. 20.  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) 
    21. 21.  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
    22. 22. Geographically restricted Relatively large institutions  Possible documentation inaccuracy  Not an inception cohort  
    23. 23.  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! 
    24. 24.    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.

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