THE 36-HOUR DAY HOW WE CARE. Peter V. Rabins Department of Psychiatry Johns Hopkins School of Medicine

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1 THE 36-HOUR DAY HOW WE CARE Peter V. Rabins Department of Psychiatry Johns Hopkins School of Medicine

2 Dementia Syndrome (Neurocognitive Disorder) Declines in 2 or more cognitive capacities resulting in functional decline Normal level of consciousness and alertness Onset in adulthood

3 PREVALENCE OF DEMENTIA BY AGE 50 P E R C E N T AGE

4 INCIDENCE OF DEMENTIA P E R 32 ±34% ±13% P E R Y E A R AGE

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10 COMMON CAUSES OF DEMENTIA Alzheimer disease 66% Vascular dementia 15-20% Dementia with Lewy bodies 8-15% Fronto-temporal dementia 5%

11 Diagnostic Features of Alzheimer Disease Slowly progressive dementia No other etiology identified: non-contributory neurological examination, laboratory evaluation and brain imaging Decline in memory plus either: -aphasia -apraxia -agnosia -(dysexecutive function )

12 3 Stages of Alzheimer Disease 1. Decline in memory -personality change -executive function impairment 2. Cortical phase -aphasia -apraxia -agnosia 3. Physical Decline -incontinence -gait disorder -swallowing/feeding -muteness

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17 THE PATIENT S EXPERIENCE: AMNESIA Intact Awareness Fearfulness Distress over Failure Lack of Awareness Anger at attempts by others to limit Unconcern Avoid failure: Lessen involvement

18 THE PATIENT S EXPERIENCE: APHASIA Intact Awareness Frustration directed towards self -- anger, depression, withdrawal Lack of Awareness Anger at others for lack of comprehension Inability to ask questions, express emotions verbally, express pain verbally

19 THE PATIENT S EXPERIENCE: AGNOSIA Lack of Awareness Constant unfamiliarity?wandering?suspiciousness?resistance to invasion of privacy

20 TREATMENT: PHARMACOLOGIC AND NON-PHARMACOLOGIC

21 How long to Continue Anti-dementia Drugs? Howard NEJM 2012

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23 Deaths Based on Total Drug and Placebo Exposures Pooled by Drug Schneider, L. S. et al. JAMA 2005;294:

24 Non-pharmacological Approaches Identify precipitants and avoid/minimize Establish realistic expectations -avoid over/under expectations -avoid over/under stimulations Simplify environment Structure/schedule day Talk through Repetition Encourage remaining abilities

25 Am J Psych, 2013

26 Brodaty Meta-analysis of Caregiver Interventions

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29 An Approach: The 4 Ds DESCRIBE Be specific DECODE DEVISE DETERMINE Consider possible causes, common and uncommon Base on decode Use common sense Be as specific as possible

30 DESCRIBE What Where When Why Who

31 Decode Cognitive Psychiatric Medical Environmental Caregiver

32 AN APPROACH: The 4Ds PROBLEM DESCRIBE DECODE DEVISE DETERMINE (Identification) (Evaluation) (Intervention) (Monitoring) FALL Where, Circumstance, Apraxic, Weakness, Imbalance, Vision, Environ Identify risk factors, intervene accordingly Count PRESSURE ULCER Regular eval Early recog Staging Medical tx, Devices, Turning reg Regular comment; Consult WT LOSS Regular wt Nutrition consult Feeding; Supplements; Tube; Meds Weekly AGGRESSION Describe behavior Identify precipitants Environment; Meds; Consult Change tx if no better; Monitor side effects

33 END OF LIFE CARE OF DEMENTIA

34 Frequency of Medical Decisions Faced by Caregivers within 6 Months of Death (n = 72) Type of Treatment Faced with Decision N (%) Only Decided For % Ever Decided Against % Hospital admission 38 (52.8) Blood test/ diagnostic test 29 (40.3) Feeding tube 25 (34.7) X-ray 21 (29.2) Infection treatment 25 (34.7) Respirator/ ventilator 17 (23.6) Resuscitate 14 (19.4) Surgery 4 (5.6)

35 Difficulty with Decision Decision To Treat Decision To Limit Not Difficult Any Difficulty Not Difficult Any Difficulty 87.7 % 12.3 % 55.2 % 44.8 % Satisfaction with Decision Decision To Treat Somewhat Satisfied Very Satisfied Decision To Limit Somewhat Satisfied Very Satisfied 28.8 % 71.2 % 80.6 % 19.4 %

36 GENETICS

37 GENETIC ISSUES Abnormalities in 3 genes are known to cause AD APP gene on chromosome 21 PS-1 gene on chromosome 14 PS-2 gene on chromosome 1 Account for fewer than 2% of cases of AD Function of these genes unknown

38 Genetics Cont. Between 30-60% of AD is under genetic influence APOE gene linkage well established -APOE E4 gene increases risk -APOE E2 gene may decrease risk -These genes are normal -APO genes carry cholesterol

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40 Genetics Continued: ~20 Recently Clusterin CLU BIN1 PICALM CR1 (complement receptor 1) MS4A CD2AP EPHA1 ABCA7 HLA-DRB5 PTK2B SLC4A4 DSG2 INPP5D MEF2C NME8 ZCWPW1 CELF1 FERMT2 CASS4 PLUS 13 OTHERS THAT MAY CONTRIBUTE Discovered Genes (2013) Need to be replicated May account for 15% of cases

41 The 3 new pathways leading to Alzheimer s disease Morgan Neuropath and Appl Neurobiol 2011; 37: Implicated Pathways Immune System Function -CLU -CR1 -ABCA7 -MS4A -CD33 EPHA1 Cholesterol Metabolism -APOE -CLU -ABCA7 Synaptic Dysfunction/Cell Membrane Processes -PICALM -BIN1 -CD33 -CD2AP -EPHA1

42 BETTER DRUG THERAPIES

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47 Potential Strategies for Bio-remediation ANTI-AMYLOID OTHER Remove bad amyloid Lower production of bad amyloid Increase production of good amyloid Immune enhancers Stem cell transplants Other memory enhancer drugs Deep brain stimulation

48 PREVENTION Primary - Anti-amyloid Secondary-Prevent morbidity Tertiary-Maximize treatment (Quality of Life)

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50 Presence of neuropsychiatric symptoms is associated with more rapid progression in an incidence cohort in Cache County (Rabins, 2013)

51 Presence of agitation is associated with more rapid progression in an incidence cohort in Cache County (Peters, in press)

52 Barnes and Yafee 2011: Attributable Risks for AD Lancet Neurology

53 Self-reported exercise is associated with longer time to dementia Cox proportional hazards regression Survival analysis time Sedentary Active Moderate Vigorous

54 Does the Treatment of Dementia Improve Quality of Life? Modest evidence that psychosocial interventions improve HRQOL No evidence that environmental design improves HRQOL No evidence that pharmacotherapy improves HRQOL