Everything you Wanted to Know About Alzheimer’s… But Forgot to Ask

1. Everything you Wanted to Know About Alzheimer’s… But Forgot to Ask Russ D. Granich, MD Chief Medical Officer Board Certified in Hospice & Palliative Medicine Hospice of the East Bay Palliative Care of the East Bay

2. Objectives • Understand what Dementia is • Learning about Alzheimer’s disease, progression, treatments and prognosis • Planning for the future • Tips for talking to and about Alzheimer’s

3. What is Dementia? • Disease vs disorder • Decline in cognition from previous level of function and be severe enough to interfere with daily function and independence • Not caused by something else • Not delirium

4. DSM-5 definition Evidence from the history and clinical assessment that indicates significant cognitive impairment in at least one of the following cognitive domains: •Learning and memory •Language •Executive function •Complex attention •Perceptual-motor function •Social cognition The impairment must be acquired and represent a significant decline from a previous level of functioning The cognitive deficits must interfere with independence in everyday activities In the case of neurodegenerative dementias such as Alzheimer disease (AD), the disturbances are of insidious onset and are progressive, based on evidence from the history or serial mental-status examinations The disturbances are not occurring exclusively during the course of delirium The disturbances are not better accounted for by another mental disorder (eg, major depressive disorder, schizophrenia)

5. Types of Dementia • Alzheimer’s Disease – 60-80% • Dementia with Lewy Bodies • Frontotemporal Dementia • Vascular (multi-infarct)Dementia • Dementia of Parkinson’s disease • Misc: delirium, alcohol, Huntington’s, etc.

6. Alzheimer’s Disease • Usually age > 60 • Women:Men = 1.5:1 • Hereditary form • Often occur in 50’s • Less than 5% of all AD • 5.3 Million Americans – 2010 • Estimate 11 – 16 Million by 2050

7. Alzheimer’s Disease • Memory Impairment • Early sign • Immediate and long term spared • Cognitive Impairment • Language • Recall • Visuospatial • Insight

8. Alzheimer’s Disease • More common over age 70 • Can last 5-20 years, average 8 years • Insidious • Predictable • FAST scale

9. Alzheimer’s Disease-FAST • Stage1 -- Normal adultNo functional decline • Stage 2 -- Normal older adultPersonal awareness of some functional decline. • Stage 3 -- Early Alzheimer's disease/Mild Cognitive ImpairmentNoticeable deficits in demanding job situations. • Stage 4 -- Mild Alzheimer'sRequires assistance in complicated tasks such as handling finances, planning parties, etc. • Stage 5 -- Moderate Alzheimer'sRequires assistance in choosing proper attire. • Stage 6 -- Moderately severe Alzheimer'sRequires assistance dressing, bathing, and toileting. Experiences urinary and fecal incontinence. • Stage 7 -- Severe Alzheimer'sSpeech ability declines to about a half-dozen intelligible words. Progressive loss of abilities to walk, sit up, smile, and hold head up.

10. Alzheimer’s Disease

11. Treatment • Medications can often improve temporarily • Targeted treatments • Non-medical interventions

12. Non-medical • Proactive approach can often help • Identify precipitants of misbehavior • Study showed decreased agitation when changing shower to bed bath • Avoid changes in environment • Aromatherapy showed effect in 3 placebo controlled studies • Lavender and lemon balm • Exercise and caregiver training • 30 minutes of exercise • CG’s trained managing behavioral issues • Music, pets, massage and touch show promise

13. Outcomes • Terminal • Gray hair, dimmer switch • Usually die from complications • When to provide comfort only • Palliative Care programs • Hospice criteria

14. Take care of the Caregiver • Caregiver stress is significant • Support groups and respite • May improve well being and decrease institutional placement • Educates newer members • Shared experience, learn tips • Educating caregivers and families about what to expect, what certain behaviors mean provide a tremendous help. • Self reflection • Why do you do what you do? • What are you trying to accomplish?

15. Planning for the Future • Many resources • The Conversation Project.org • Compassion and Choices • Alzheimer’s Association • Coalition for Compassionate Care • Support groups • Earlier is better • Become informed • Seek help • Do it!

16. Planning for the Future- Roadblocks • Wrong people in the room • Poorly executed advance directive • Get caught in medical terminology • Seagulls

17. Tips for talking • Often counterintuitive • Don’t correct • Don’t argue • Keep them occupied • Music • Be creative – they will forget • Distractions

18. Tools

21. The Conversation-TCP • Step 1: Get Ready • Step 2: Get Set • Step 3: Go • Step 4: Keep Going

22. Step 1: Get Ready • “It’s always too soon until it is too late” • Hesitations • Unkind • Fear of the future, loss, what next? • Feel alone • Protect our loved ones

23. Step 1: Get Ready • However… • Makes them feel you will be there for them • Become a trusted confidant – reassuring • They may be frightened • Be gentle • Two way conversation

24. Step 1: Get Ready • Don’t be dismissive • Take advantage of “Moments” • Take it slow and not all at once • Do it! While you can! • Also for you, so you know how to make decisions

25. Step 2: Get Set-The Conversation • Keep it simple • Find out who should be the agent/proxy*** • Be concrete • Explore what worries them • Knowing and honoring their wishes is the best gift you can give each other • Use lay terminology

26. Step 2: Get Set • Starter kit has many questions to help the discussion • What if your loved one is unable to express wishes? • It’s not about you

27. Step 3: Go • Healthcare system is not always there for you • Focus on disease, not the person • The different dementias are diseases, just affect primarily the brain • It’s terminal, when do you stop treating other conditions? • Usually die from infection or malnutrition

28. Step 3: Go • You know their wishes • Share it • Paperwork • Advance directive – Durable Power of Attorney for Healthcare (DPOAHC) • POLST - fridge

29. Terminology in California • Proxy, decision maker • Agent • Surrogate • AD/DPOAHC • Decision does not automatically go to closest family member • POA over person/property is different • Accepted succession of authority without one

30. Advance Directive vs POLST

32. Step 4: Keep Going • Step 1: Ok to have the conversation • Step 2: Have the conversation • Step 3: Embrace your role, make sure wishes are respected • Step 4: Be there for them, no matter what

33. Questions?My contact info:Russ Granich, MD925-887-5678 (O)russg@hospiceeastbay.org