Dementia: Delivering the Diagnosis

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1 Dementia: Delivering the Diagnosis Daniel D. Christensen, M.D. Clinical Professor of Psychiatry Clinical Professor of Neurology Adjunct Professor of Pharmacology University of Utah Diagnosing Dementia What to Tell the Patient and Family Geriatrics and Aging 25; 8,48-51 No more than 5% of physicians regularly disclose the diagnosis to patients with dementia WHY? 1

2 Myth #1 They re already upset enough. It will only make it worse. Anxiety level in patients and caregivers Before and after the disclosure of a dementia diagnosis J Am Geriart Soc 28;56: Depression in patients and caregivers Before and after the disclosure of a dementia diagnosis J Am Geriart Soc 28;56:

3 the vast majority of older individuals would want to know their diagnosis if they developed AD. Grossberg, 28; Ouimet, 24; Turnbull, 23; Eison, 26 I have my diagnosis, and I know I have Alzheimer s it s just a matter of making the best of it You know, I mean every day is a new day and it always brings new challenges. I think that s the way life is anyway. Myth #2 You can never be sure of the diagnosis. Why just give them a guess. 3

4 It is true that there are currently no clinically available laboratory, neurologic or neuroimaging findings which provide absolute confirmation of the diagnosis. Rex meets DSM IV and NINCDS-ADRDA diagnostic criteria for probable Alzheimer s Disease. What is the probability that he will meet pathologic diagnostic criteria for AD at autopsy? A. 1% B. 5% C. 85% D. 98% 4

5 Predictive value of clinical diagnostic criteria for Alzheimer s About 85% of those who meet diagnostic criteria during life will meet neuropathologic criteria for Alzheimer s Disease at autopsy. (Range 75-97%) J Am Geriatric Society 1999; 47: Alz Disease and Assoc Disorders 1996; 1: Neurology 1995; 45: Neurology 2; 55: Myth #3 It doesn t make any difference. You can t do anything about it anyway. 5

6 If patients and families know the diagnosis they can: -Better plan and prepare for the future Estate planning Power of attorney Advance directives - Mentally & emotionally prepare for what is to come -Make decisions about their health care - Express preferences regarding choices they will be unable to make in the future AChEI Class Efficacy: Cognition At the end of one year, all three agents show no statistically significant decline from baseline on cognitive tests Long Term effects: ADL and Cognition AD2 Study (donepezil) Time (weeks) Treatment effect.83 (SE.18) P<.1 MMSE Change From Baseline Better Worse Remaining subjects Donepezil Donepezil Placebo Placebo AD2 Collaborative Group. Lancet. 24;363 (9427):

7 Functional Response: No mean ADL change 1 year (galantamine) 2 Double-blind Open- Extension Improvement 2 Mean (± SE) 4 Change From Baseline In 6 DAD 8 * Deterioration Time (months) Galantamine 24 mg/galantamine 24 mg *Not significantly different from baseline. Pooled placebo data; Galantamine and historical placebo groups Raskind, et al, Neurology, 2. Behavioral Response: Delayed adverse behaviors (galantamine) 3 2 Mean (± SE) Change From 1 Baseline In NPI Placebo Dose Increments Galantamine 16 mg/d Galantamine 24 mg/d *P <.5 vs placebo (both doses). P <.5 vs baseline. Reference: Tariot, et al, Neurology, Months * Improvement Deterioration Memantine in Moderate-to-Severe AD Cognitive and Functional Effects Severe Impairment Battery Activities of Daily Living End Point Weeks Memantine Placebo Difference in ADCS-ADL sev score Reisberg et al, NEJM 23;348: End Weeks Point 7

8 Memantine in Moderate-to-Severe AD Combined Effect with Donepezil (cognitive) Weeks Memantine+donepezil Placebo+donepezil End Point (LOCF) Tariot et al, JAMA 24;291: Theoretical Outcome with Disease-Modifying Treatment Treatment begun Cognition Time The early diagnosis has given me time to enjoy the life I have now. I also have the faculties to appreciate the simple things: a beautiful sunset, a tree in the spring Yes, having Alzheimer s has changed my life; it has made me appreciate life more. I no longer take things for granted. 8

9 Barrier to Disclosure I m not sure what to say. General guidelines Spouse or family members present (with patient s consent) Private, quiet, comfortable setting with adequate time Review the testing that has been done and what it means Use the word Alzheimer s Emphasize current capabilities and maintaining function Be a partner and advocate for patient and caregiver Provide educational resources and necessary referrals Discuss pharmacotherapy and lifestyle changes Mention ongoing research into causes and treatments Offer clinical trials, if available Answer any questions Schedule another time for followup and further discussion Discussion with Rex and Karen 9

10 Summary An open direct discussion following an Alzheimer s diagnosis: - Will usually decrease anxiety and concern both in the patient and family -Will allow patients and families to make necessary plans and decisions -Should be supportive, reassuring and emphasize current abilities and preservation of function Dementia: Delivering the Diagnosis Daniel D. Christensen, M.D. Clinical Professor of Psychiatry Clinical Professor of Neurology Adjunct Professor of Pharmacology University of Utah 1

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