Dementia: Delivering the Diagnosis Daniel D. Christensen, M.D. Clinical Professor of Psychiatry Clinical Professor of Neurology Adjunct Professor of Pharmacology University of Utah 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 2005; 8,48-51 “No more than 50% of physicians regularly disclose the diagnosis to patients with dementia WHY?

“They’re already upset enough”. “It will only make it worse”. Myth #1

Anxiety level in patients and caregivers Before and after the disclosure of a dementia diagnosis J Am Geriart Soc 2008;56:

Depression in patients and caregivers Before and after the disclosure of a dementia diagnosis J Am Geriart Soc 2008;56:

“… the vast majority of older individuals would want to know their diagnosis if they developed AD”. Grossberg, 2008; Ouimet, 2004; Turnbull, 2003; Eison, 2006

“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”.

“You can never be sure of the diagnosis. Why just give them a guess”. Myth #2

It is true that there are currently no clinically available laboratory, neurologic or neuroimaging findings which provide absolute confirmation of the diagnosis.

A. 10% B. 50% C. 85% D. 98% A. 10% B. 50% C. 85% D. 98% 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? 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?

J Am Geriatric Society 1999; 47: Alz Disease and Assoc Disorders 1996; 10: Neurology 1995; 45: Neurology 2000; 55: J Am Geriatric Society 1999; 47: Alz Disease and Assoc Disorders 1996; 10: Neurology 1995; 45: Neurology 2000; 55: Predictive value of clinical diagnostic criteria for Alzheimer’s 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 %) About 85% of those who meet diagnostic criteria during life will meet neuropathologic criteria for Alzheimer’s Disease at autopsy. (Range %)

“It doesn’t make any difference. You can’t do anything about it anyway”. Myth #3

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 testsAt the end of one year, all three agents show no statistically significant decline from baseline on cognitive tests

Long Term effects: ADL and Cognition AD2000 Study (donepezil) Remaining subjects Donepezil Placebo AD2000 Collaborative Group. Lancet. 2004;363 (9427): DonepezilPlacebo Change From Baseline Better Time (weeks) Treatment effect 0.83 (SE 0.18) P< Worse MMSE

Functional Response: No mean ADL change 1 year (galantamine) Galantamine 24 mg/Galantamine 24 mg Improvement Deterioration Mean (± SE) Change From Baseline In DAD Pooled placebo data; Galantamine and historical placebo groups *Not significantly different from baseline. Time (months) –14 –12 –10 –8 –6 –4 –2 0 2 * Open- Extension Double-blind Raskind, et al, Neurology, 2000.

Behavioral Response: Delayed adverse behaviors (galantamine) *P <.05 vs placebo (both doses). † P <.05 vs baseline. Mean (± SE) Change From Baseline In NPI Reference: Tariot, et al, Neurology, Galantamine 24 mg/d Placebo Galantamine 16 mg/d Improvement Deterioration –1 –2 –3 –4 –5 –6 * Months Dose Increments †

Memantine in Moderate-to-Severe AD Cognitive and Functional Effects Reisberg et al, NEJM 2003;348: End Point Weeks Difference in SIB Severe Impairment Battery End Point Weeks Difference in ADCS-ADL sev score Activities of Daily Living Memantine Placebo

Memantine in Moderate-to-Severe AD Combined Effect with Donepezil (cognitive) Tariot et al, JAMA 2004;291: Memantine+donepezil Placebo+donepezil Difference in SIB Weeks End Point (LOCF)

Theoretical Outcome with Disease-Modifying Treatment Cognition Time Treatment begun

“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”.

“I’m not sure what to say”. Barrier to Disclosure

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

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 Daniel D. Christensen, M.D. Clinical Professor of Psychiatry Clinical Professor of Neurology Adjunct Professor of Pharmacology University of Utah