Memory Care Symposium: Innovations from Care to Cure
Memory Care Symposium: Innovations from Care to Cure
Welcome and Introduction James Balda Argentum, President & CEO Dennis Jakubowicz MatrixCare, SVP Market Development
Memory Care Symposium: Innovations from Care to Cure
Innovation and Its Role in Memory Care
SENIOR LIVING 2025
John Zeisel, Ph.D. Hearthstone Alzheimer Care Co-founder & President
Memory Care Symposium: Innovations from Care to Cure
Ideas to Implementation Reflections: The Nasher Museum’s Alzheimer’s Project SENIOR LIVING 2025 Jessica Ruhle The Alzheimer’s Poetry Project Michelle Otero Scripted Improv John Zeisel, Ph.D.
Memory Care Symposium: Innovations from Care to Cure
Look, Listen, & Lunch SENIOR LIVING 2025
Reflections: The Nasher Museum’s Alzheimer’s Project at Duke University
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
How can I apply this? • Visit nasher.duke.edu • Find other museum and arts programs • Request arts programming On your own! • Visual Thinking Strategies • • •
What is happening What do you see that makes you say that? What else can we find?
Jessica Kay Ruhle, Manager of Public Education Jessica.ruhle@duke.edu 919-684-8816 Reflections: The Nasher Museum’s Alzheimer’s Project at Duke University
Memory Care Symposium: Innovations from Care to Cure
Alzheimer’s Poetry Project
Sparking Creativity with Poetry
Memory Care Symposium: Innovations from Care to Cure
APP
Call and Response
Memory Care Symposium: Innovations from Care to Cure
APP
Call and Response
Memory Care Symposium: Innovations from Care to Cure
APP
Call and Response
Memory Care Symposium: Innovations from Care to Cure
APP
Discussion Starter APP in Minnesota
Memory Care Symposium: Innovations from Care to Cure
APP
Props
Memory Care Symposium: Innovations from Care to Cure
APP
Creating the Poem APP in New Mexico
Memory Care Symposium: Innovations from Care to Cure
APP
International Programming
Memory Care Symposium: Innovations from Care to Cure
APP
Collaboration APP in New York
Memory Care Symposium: Innovations from Care to Cure
Alzheimer’s Poetry Project
Michelle Otero Spanish Language Coordinator Alzheimer’s Poetry Project kmotero@gmail.com Gary Glazner Founder & Director Alzheimer’s Poetry Project garyglaznerpoet@gmail.com
Website: alzpoetry.com Twitter: @AlzheimersPoet Facebook: Alzheimer’s Poetry Project
Sparking Creativity with Poetry
Memory Care Symposium: Innovations from Care to Cure
SENIOR LIVING 2025
BREAK
Memory Care Symposium: Innovations from Care to Cure
Lunch and Innovation Dialogues
SENIOR LIVING 2025
Participate in an interactive and lively discussion on innovation in memory care. Share ideas. Share solutions.
Memory Care Symposium: Innovation Dialogues
Memory Care Symposium: Innovations from Care to Cure
Think. Create. Share SENIOR LIVING 2025
Memory Care Symposium: Innovations from Care to Cure
Action Cards
SENIOR LIVING 2025 1. 2. 3. 4. 5.
Engage with Music Design for Safety Promote Nutrition Train for Success Technology In Care
Memory Care Symposium: Innovations from Care to Cure
Judge Panel SENIOR LIVING Creativity 1-5 Scoring (52025 being Highest) Applicability to Topic 1-5 Scoring (5 being Highest) Able to Replicate in Senior Living 1-5 (5 being Highest) Idea-Rating (Incremental, Transformational, Breakthrough)
Memory Care Symposium: Innovations from Care to Cure
Everyone will have 3 minutes to think of aspects as many as you can think of,
Think-3 Minutes
Think about your topic. Brainstorm with team. Write down as many ideas you/team can think of, one idea per/post-it. Anything that comes to mind write the idea and stick it on the table. Get as many ideas out as many ideas as possible.
ases, terms, ideas, inspirations are great and try to write ass possible. Think of this like free-association, anything that comes to mind write the idea and stick it on the table.
THINK Ready. Set. Go
Memory Care Symposium: Innovations from Care to Cure
Create-12 Minutes Sort through the post-it note ideas. Identify 1 main concept that is most useful & valuable based on your action card and the teams’ judgment. Create a 2-minute presentation sharing your idea and concept for innovation. LIVING 2025
CREATE Ready. Set. Go
Memory Care Symposium: Innovations from Care to Cure
Share-20 Minutes Each team has 2 minutes to share their findings. Choose a team presenter! Present in whatever way your team finds most useful to the Judge Panel.
SHARE Ready. Set. Go
Memory Care Symposium: Innovations from Care to Cure
Judge Panel SENIOR LIVING Creativity 1-5 Scoring (52025 being Highest) Applicability to Topic 1-5 Scoring (5 being Highest) Able to Replicate in Senior Living 1-5 (5 being Highest) Idea-Rating (Incremental, Transformational, Breakthrough)
And the Top Innovations Are…
Memory Care Symposium: Innovations from Care to Cure
Breakthroughs on the Road to a Cure SENIOR LIVING 2025
Gary Small, M.D. Professor of Psychiatry and Biobehavioral Sciences, the Parlow Solomon Professor on Aging at the David Geffen School of Medicine at UCLA, Director of the UCLA Longevity Center
Breakthroughs on the Road to a Cure Gary W. Small, MD
Professor of Psychiatry; Parlow Solomon Professor on Aging University of California, Los Angeles Semel Institute for Neuroscience & Human Behavior David Geffen School of Medicine Director, Division of Geriatric Psychiatry UCLA Longevity Center Resnick Neuropsychiatric Hospital
Faculty Disclosure • Dr. Small: Research Support—NIH, Foundations/Gifts (Ahmanson, Marion and Bill Wilson, James and Carol Collins); Endowments—Stark, Parlow-Solomon, Plott; Research Support: Pom Wonderful; Allergan, Avanir, Axovant, Cogniciti, Forum Pharmaceuticals, Janssen, Lilly, Herbalife, Newsmax Media, Novartis, Otsuka, Pfizer, Quest, Workman Publishing, Harpercollins; Patents—FDDNP-PET (licensed to CTEM, LLC); Stock—CTEM, LLC. • Collaborators (Psychiatry, Nutrition, Pharmacology, Neurology, Pathology, Public Policy): Jorge Barrio, Susan Bookheimer, Greg Cole, Linda Ercoli, David Heber, S.-C. Huang, Vladimir Kepe, Helen Lavretsky, Zhaoping Li, John Mazziotta, David Merrill, Karen Miller, S. Satyamurthy, Prabha Siddarth, Daniel Silverman, Harry Vinters, Paul Thompson, Fernando Torres-Gil
Grandma Ollie at 104 and me
Increased Life Expectancy and Epidemic of Alzheimer’s Disease • Age is the single greatest risk factor for Alzheimer’s disease • 76 million Baby Boomers (born 1946 – 1964) • Every 70 seconds another American is diagnosed • Annual cost in the United States over $200 billion • 5 million victims today; an estimated 14 million by 2050
Alzheimer’s Association. 2011 Alzheimer’s Disease Facts and Figures. www.alz.org/downloads/facts_figures_2011.pdf. Accessed June 19, 2015. Hurd MD, et al. N Engl J Med. 2013;368(14):1326-1334. Hebert LE, et al. Neurology. 2013;80(19):1778-1783.
Alzheimer’s Disease is in the News and on our Minds Scientists Pursue an Unusual Tactic Against Alzheimer’s
Lifestyle Changes Can Reduce Risk of Alzheimer's
What is Alzheimer’s Disease? • 1906: Alois Alzheimer presented case: confused, psychotic 51-year-old woman who progressed rapidly until her death 4 years later • Her autopsied brain tissue showed waxy protein fragments/twisted fibers that define the disease • 1968: scientists discovered same plaques/tangles caused “senility”
Plaques
Tangles
Amyloid Plaques and Tau Tangles in Alzheimer’s Disease and Normal Aging Plaques
Alzheimer’s
Tangles Courtesy of Harry Vinters, MD.
Normal
Solving the Alzheimer’s Research Puzzle • Risk factors • APOE-4 genetics, physical inactivity, obesity, stress, depression, head trauma
• Protective factors • Education, physical activity, mental stimulation, not smoking
• Causes • Genetic mutations (APP, presenilin) APOE-4 = apolipoprotein E-4 APP = Amyloid precursor protein
Finding the Road to a Cure
Finding the Road to a Cure
Brain Health
Brain Aging
DSM-5 Minor Neurocognitive Disorder
DSM-5 Major Neurocognitive Disorder
Normal Aging
Mild Cognitive Impairment
Age
Brain aging is gradual:
Decline in cognition and metabolism Accumulation of plaques and tangles
Dementia
Inflammation and Brain Aging • Normal inflammation protects the body from infection/injury • Brain inflammation associated with aging may lead to memory loss • Decreasing inflammation may protect brain health • Anti-inflammatory lifestyle strategies • A good night’s sleep • Eating omega-3 fatty acids (fish oils, nuts) • Physical exercise Small GW. Nutrition and brain health. In: Berganier CD, et al (Eds). Handbook of Nutrition and Food, Third Edition. Boca Raton, FL: CRC Press Taylor & Francis Group; 2013. Chen ST, Small GW. Alzheimer’s Disease and Inflammation. In: Aggarwal BB, et al (Eds). Immunonutrition: Interactions of Diet, Genetics, and Inflammation. Boca Raton, FL: CRC Press; 2015.
Examples of Biomarkers to Track Brain Aging • Serum/blood • APOE, presenilin/APP mutations, TREM2 • Amyloid, tau, C-reactive protein, TNF-a
• CSF • Ab-42, phosphorylated tau
• Imaging • Structural (MRI, CT, PET amyloid/tau; DTI) • Functional (FDG-PET, functional MRI)
• Other strategies • Sniff test • Head size Small GW, et al. Lancet • Vascular riskNeurol. factors2008;7(2):161-172. (cholesterol, BP,
etc)
Alzheimer’s Genetic Considerations • Rare families with genetic mutation causing dementia early in life in 50% of relatives • Presenilin genes (chromosomes 1 and 14) • APP gene (chromosome 21)
• Apolipoprotein E-4 is a common allele in 20% of population that increases risk • Some with APOE-4 never get AD • Some without APOE-4 get AD • Not recommended as a predictive test Rohn TT. Oxid Med Cell Longev. 2013;2013:860959. Small GW, et al. In: Iqbal K, Winblad B (Eds). Alzheimer’s Disease and Related Disorders: Research Advances. 2005:217-224.
Neuroimaging and Dementia • AAN Guidelines • MRI or CT in all demented patients
Stroke
WM disease
• Medicare Reimbursement • FDG-PET to differentiate AD from FTD AD
FTD
• Developing PET technologies • Amyloid plaque and tau tangle imaging
Knopman DS, et al. Neurology. 2001;56(9):1143-1153. Small GW, et al. N Engl J Med. 2006;355(25):2652-2663. Klunk WE, et al. Neurology. 2004;55(3);306-319. www.cms.hhs.gov.
PIB
FDDNP
PET and Genetic Risk for Alzheimer’s Disease Normal Memory
Dementia
PET Imaging Genetic Risk
-18% No APOE-4
-12%
-20%
-22%
APOE-4
Lower inferior parietal metabolism
in non-demented persons with a single copy of APOE-4
Small GW, et al. Proc Natl Acad Sci U S A. 2000;97(11):60376042.
The Brain Naturally Compensates for Neurodegeneration APOE4
APOE3
Bookheimer SY, et al. N Engl J Med. 2000;343(7):450-456.
Functional MRI scans show increased activity (color areas) during memory tasks in people at genetic risk for AD.
P-PET Imaging of Amyloid and Tau
Small GW, et al. N Engl J Med. 2006;355(25):2652-2663; FDDNP is an experimental method and not FDA approved.
Progression of Alzheimer’s Abnormal Proteins in Autopsy Studies Plaques
Tangles
StageDevoid A B C of Amyloid orStages NFTs Stages III/IV V/VI I/II NFTs = neurofibrillary tangles. Braak H, et al. Acta Neuropathol. 1991;82(4):239-259. Price JL, et al. Ann Neurol. 1999;45(3):358368.
Plaques and Tangles Accumulate in the Brain as Memory Worsens More Protein
Memory Score
Less Protein
FDDNP-PET scans of 20 volunteers (8 normal, 6 MCI, 6 AD) Braskie MN, et al. Neurobiol Aging. 2010;31(10):1669-1678. Small GW, et al. Arch Neurol. 2012;69(2):215-222; FDDNP-PET in an experimental method and not FDA approved.
FDDNP-PET Patterns in Suspected CTE, Alzheimer’s Disease and Normal Aging
NFL Player
CTE = Chronic Traumatic Encephalopathy
Veteran
Alzheimer’s
Control
Areas Associated with Memory and Learning PC FC S
OC B
FC = Frontal cortex PC = Parietal cortex OC = Occipital cortex H = Hippocampus B = Nucleus basalis S = Medial septal nucleus Adapted from: Coyle JT et al. Science. 1983;219:1184-1190
H
Pharmacotherapy for AD: Timeline Acetylcholinesterase inhibitors, NMDA antagonist
Nootropics, Anti-depressants, Antipsychotics
Anti-oxidants (Vitamin E)
Acetylcholine precursors, Cholinergic agonists
pre-1970
1993
Immunotherapy Trials
Donepezil
2010
Galantamine
Memantine
Rivastigmine
1997
Other Anti-amyloid Therapy trials
2000
1990
1980
Tacrine
MCI Prevention trials: Estrogen, NSAIDs, AChEIs, Statins, Vitamin E
2000
2001
2003
Predicted Result of Early Treatment
Cognitive Function
Early Treatment
No Treatment Late treatment at time of diagnosis using current clinical methods
Time
Brain protection more feasible short-term strategy than brain repair
Medications for Alzheimer’s Donepezil (Aricept) Disease Rivastigmine (Exelon) Memantine (Namenda)
Mild
Impairment
Disease modifying
Placebo Symptomatic Disease modifying
Severe Start Treatment
Time
End Treatment
Ferris SH. Alzheimer Dis Assoc Disord. 2002;16(suppl 1):S13-S17.
Possible Anti-Plaque/AntiTangle Treatments • Anti-plaque or anti-amyloid • Medications (eg, secretase inhibitors) • Vaccines • Monoclonal antibodies • Anti-tau medications • Anti-inflammatory drugs • Cholesterol lowering drugs • Intranasal insulin spray • Neuromodulation (magnets, focused ultrasound) Small GW. BMJ. 2002;324(7352):1502-1505. Peila R, et al. Stroke. 2001;32(12):2882-2889. Craft S, et al. Arch Neurol. 2012;69(1):29-38.
Anti-Inflammatory Treatment Increased Cognition and Brain Function in Normal Aging • Mean age: 59 years • 18-month placebo controlled trial • Cognition improved • Executive function (P = .03) • Semantic memory (P = .02)
• Brain function (PET scanning) • 6% increase in prefrontal cortex (P = .003) Small GW, et al. Am J Geriatr Psychiatry. 2008;16(12):999-1009.
Does Potential Biomarker Correlate with and/or Predict Cognitive Decline? Mild
Impairment
New treatment 1 started
Cognitive ability Biomarker 1
Severe Baseline
Time
Does Potential Biomarker Correlate with and/or Predict Cognitive Decline? Mild
Impairment
New treatment 2 started
Cognitive ability Biomarker 2
Severe Baseline
Time
Brain Healthy Lifestyle Strategies Associated with a Lower Risk for Dementia • Genetics account for only part of the risk for dementia • Potential non-genetic factors • Physical conditioning • Mental stimulation/cognitive training • Stress management • Nutrition Small GW. BMJ. 2002;324(7352):1202-1205.
Physical Exercise • Active laboratory animals • Larger brains • Better memory • Human studies • Cardiovascular conditioning
• Larger parietal, temporal, frontal areas • Increase BDNF
• Physically active adults • Lower AD risk
• Brisk walking • Improves cognition (vs stretching/toning) BDNF = brain derived neurotrophic factor. Gage FH. J Neurosci. 2002;22:612-613. Freidland RP, et al. Proc Natl Acad Sci U S A. 2001;98(6):3440-3445. Colcombe SJ, et al. J Gerontol A Biol Sci Med Sci. 2003;58(2):176-180. Larson EB, et al. Ann Int Med. 2006;144(2):73-81.
Self-Reported Sitting-Time and Medial Temporal Lobe Thinning in Older Adults 3.5
3
Medial Total MTL Thickness (mm) Temporal Volume 2.5
2 1
3
5
7
9
11
13
15
17
Sitting/Day (Hrs) Hours/Day Sitting David Merrill, MD, PhD, Alison Burggren, PhD, et al. In preparation (unpublished data).
Aerobic Conditioning and Hippocampal Volume
Middle-aged and older volunteers who walked briskly Kramer AF, et al. J Gerontol A Biol Sci Med Sci. 2004;59(9):940-957.
Mental Exercise Builds Brain Muscle • Mental stimulation • Activates neural circuits • Associated with lower AD risk • Educational achievement, bilingualism, doing puzzles • Lower dementia risk • Memory training can improve memory ability quickly and can maintain higher performance for 5 Ballor K, etmore al. JAMA.years 2002;288(18):2271-2281. Willis SL, et al. JAMA. 2006;296(23):2805-2814. Craik FI, et al. Neurology. 2010;75(19):1726-1729.
Brain Training: Calisthenics for the Older Mind
The Most Common Memory Complaints • Names and faces • Where we put things • Forgetting an appointment or plan • Forgetting a word or name we should know that is on “the tip of your tongue”
UCLA Longevity Center Memory Training/Healthy Lifestyle Classes • Taught by volunteer trainers • Mean student age, 70 years; range, 14-93 • >100,000 participants have completed the course • Currently available in: • Arizona, California, Canada, Colorado, Florida, Illinois, Kansas, Maryland, Massachusetts, Michigan, New Jersey, Pennsylvania, Texas, Virginia
Short-Term Benefits of Healthy Lifestyle • 6-week memory fitness program • Independent living participants (Erickson Living) • Significant (P < .001) memory
improvements • 2-week healthy lifestyle/memory training • Significant improvement in memory and brain Miller KJ, et al. Am J Geriatr Psychiatry. 2012;20(6):514-523. efficiency (prefrontal cortex) Small GW, et al. Am J Geriatr Psychiatry. 2006;14(6):538-545.
Memory Training Can Erase Senior Moments from Your Brain Upper fMRI scans: neural circuits work hard to compensate for senior moments (red areas) Lower scans: after 2-weeks of training minimal brain work overcomes memory challenges
LOOK, SNAP, CONNECT • Look • Actively observe what you want to learn
• Snap • Create a vivid mental snapshot or memorable image
• Connect • Visualize a link to associate images
Do you remember this face? Do you remember her name?
Names and Faces
Paul Foreman
Names and Faces
Harry
Names and Faces
Lisa
Names and Faces
Sue Bangel Sheâ&#x20AC;&#x2122;s an attorney with bangs
Reducing Chronic Stress Improves Brain Function • Animal studies: Chronic stress Smaller brains Impaired memory
• Human studies: Chronic stress Leads to depression, increase dementia risk
People prone to stress Twofold greater AD risk
Cortisol injections Temporarily impair memory
Sapolsky RM. Exp Gerontol. 1999;34(6):721-732. Newcomer JW, et al. Arch Gen Psychiatry. 1999;56(6):527-533. Köhler S, et al. Am J Geriatr Psychiatry. 2011;19(10):902-905. Wilson RS, et al. Neurology. 2003;61(11):1479-1485.
Stress Reduction Improves Brain Health
• Effect of meditation vs relaxation on brain activity: Meditation > Relaxation
Right frontal cortex
Right inferior temporal gyrus
Left Thalamus 3.0 > Z > 1.6
Managing stress → Lavretsky H, et al. Int J Geriatr Psychiatry. 2013;28(1):57-65.
Relaxation > Meditation • Meditation alters tolemerase activity and biomarkers of inflammation
Nutrition and Brain Health • Weight management • Omega-3 fats • Fish, nuts • Brain is 70% fat
• Anti-oxidant fruits and vegetables • Avoid processed food Solfrizzi V, et al. Neurology. 1999;52(8):1563-1575. Morris MC, et al. Alzheimer Dis Assoc Disord. 1998;12(3):121-126. Eriksson J, et al. Br Med Bull. 2001;60:183-199. Van Praag H, et al. Nat Rev Neurosci. 2001;1(3):191-198.
Evolution and Body Weight
Obesity Worsens Memory While Weight Loss Improves Memory • Obese people have a fourfold increased risk for dementia • Obese patients who had weight-loss surgery → • After 12 weeks, they showed significant improvements in memory compared with controls
Xu WL, et al. Neurology. 2011;76(18):1568-1574. Gunstad J, et al. Surg Obesity Relat Dis. 2011;7(4):465-472.
Good Bacteria Trigger Weight Loss • Weight loss from gastric bypass surgery found to have two sources: • Fewer calories absorbed • Change in the balance of intestinal bacteria
• Some GI bacteria increase fat metabolism • Results point to new treatment studies designed to increase proportion of good germs in our guts • Such treatments could benefit brain health since overweight and obesity increase risk for cognitive and mood symptoms Liou AP et al. Conserved Shifts in the Gut Microbiota Due to Gastric Bypass Reduce Host Weight and Adiposity. Sci Transl Med 27 March 2013
Brain Protective Drinks • Red wine (resveratrol) • Anti-oxidant, “anti-aging”
• Any alcohol in moderation • Caffeine • Associated with lower risk for AD & Parkinson’s disease
Ekselinen MH, et al. J Alzheimers Dis. 2010;20(Suppl 1):S167-S174. Neafsey EJ, et al. Neuropsychiatr Dis Treat. 2011;7:465-484.
Inflammation/Oxidative Stress: Clinical Trials in Progress
Double-blind placebo-controlled studies in people at risk for dementia Curcumin: anti-oxidant, anti-inflammatory, anti-amyloid properties (ClinicalTrials.gov Identifier: NCT01383161) 18-month study Outcomes: memory tests/scans of plaques and tangles Pomegranate extract (ClinicalTrials.gov Identifier: NCT01571193) Anti-oxidant polyphenols 12-month study Outcomes: memory tests
A Good Night’s Sleep Protects Brain Health • Memories consolidate during sleep, which improves recall abilities the next day • Poor sleep associated with worse cognitive ability • Longer sleep latency associated with greater Aβ burden in prefrontal cortex • Strategies for better sleep: • Active lifestyle • Stress management • Relaxation techniques Kupfer DJ, Reynolds CF 3rd. Management of insomnia. N Engl J Med. 1997 Jan 30;336(5):341-6; Branger P, et al. Relationships between sleep quality and brain volume, metabolism, and amyloid deposition in late adulthood. Neurobiol Aging. 2016 May;41:107-14
Social Ties Promote Healthy Brain Aging • Stimulating conversations increase memory performance and mental speed • Talking with an empathic friend can lower stress and further protect brain cells • Social support provides practical assistance that improves health and longevity • Stronger social networks are associated with longer life expectancy
Ybarra et al. “Mental exercising through simple socializing: social interaction promotes general cognitive functioning.” Personality and Social Psychology Bulletin 34, no. 2 (2008):248–59; Stringhini et al. Am J Epidemiol. 2012;175;1275-83.
Other Lifestyle Strategies Associated with Lowering Risk for Alzheimer’s Disease • Avoid head trauma • If you smoke, stop • Keep a positive outlook • Treat hypertension, high cholesterol, and other vascular risks
Small G, et al. 2 Weeks to a Younger Brain. New York, NY: Humanix; 2015. Merrill DA, et al. J Alzheim Dis. 2013;35(1):147-157.
Can We Prevent Alzheimer’s Disease? • If the term “prevent” is taken to mean “cure,” then the answer is no. • Although true prevention is an ideal goal, intermediary targets are feasible: • Delaying onset and slowing progression of the degenerative process might be more reasonable
Savica R, et al. Psychiat Clin North Am. 2011;34(11):127-145.
Prevention Goal: Delay Symptom Onset DEMENTIA NON-DEMENTED
Cognitive Function
Prevention Strategies
No Intervention
69
70
71
Age
72
73
74
75
76
Modifiable Risks for Dementia 7 Major Risks
Impact
• Depression/stress
Up to one-half of AD cases worldwide are potentially attributable to these factors
• Obesity • Hypertension • Diabetes • Physical inactivity • Smoking • Low education/cognitive inactivity
Barnes DE, et al. Lancet Neurol. 2011;10(9):819-828.
How Can We Help People to Change • Educate •
Connection between lifestyle and disease prevention
• Fun and easy program • See quick results •
Motivates to continue healthy behaviors so they become habits
UCLA Alzheimerâ&#x20AC;&#x2122;s Prevention Project
Names and Faces
Do you remember his name? Paul Foreman
Names and Faces
Harry
Names and Faces
Lisa
Names and Faces
Sue Bangel
Conclusions • Current diagnostic and treatment strategies can improve function and quality of life • Drug and biomarker development is key to more effective interventions and prevention treatments • As we wait for future study results, the evidence points to brain healthy behaviors to: • Improve quality of life today • Stave off future AD symptoms • For more information:
Memory Care Symposium: Innovations from Care to Cure
BREAK
Memory Care Symposium: Innovations from Care to Cure
Care to Cure Roundtable SENIOR LIVING 2025
Marie Bernard, M.D. NIA Deputy Director
Joshua Wiener, Ph.D. Distinguished Fellow at RTI International
The National Institute on Aging: Our Role in Dementia Research Memory Care Symposium: Innovations from Care to Cure Marie A. Bernard, M.D. Deputy Director National Institute on Aging October 5, 2016
Objectives • The role of NIA in Alzheimer’s Disease research • The role of NIA in the National Plan to Address Alzheimer’s Disease • Alzheimer’s research priorities and findings • Future plans
National Institutes of Health
NIH Building 1
NIA Mission • Established in 1974 to support and conduct research on: aging processes age-related diseases special problems and needs of the aged
• Train and develop research scientists • Provide research resources • Disseminate information on health and research advances
Prevalence of Dementia in the U.S. 2003 data 2013 data
Hebert, LE et al. (2013) Neurology 80(19):1778-83. Hebert, LE et al. (2003) Arch Neurol 60(8):1119-22.
The 5-year age-/sex-adjusted cumulative hazard rates for dementia were: • 3.6/100 persons – late ‘70s - early ‘80s • 2.8/100 persons – late ‘80s - early ‘90s • 2.2/100 persons – late ‘90s - early ‘00s • 2.0/100 persons – late ‘00s - early ‘10s Satizabal, CL et al. (2016) NEJM 374(6):523-32
Setting Priorities for AD • U.S. National Alzheimer’s Plan introduced in 2012 • Brings together the AD community on: – Prevention/treatment research – Clinical care – Long-term care & supports – Public awareness and engagement • Progress tracked regularly
Genetic Regions of Interest in Alzheimer’s Disease By year of discovery NOTE: Color indicates mechanism of action in the body. See key below.
91 19
● APP ● APOE
95 19
● PS1 ● PS2
09 20
●● CR1
1 20
0
● BIN1 ● CD33
● PICALM
●● CLU
1 20
1
● SORL1 ● CD2AP ● MS4A4/MS4A6E ● EPHA1
12 20
● TREM2 ●● ABCA7
1 20
3
● HLA-RB5
14 20
● TRIP4 ● MAPT
1 20
5
● MEF2cC ● PTK2B ● FERM T2 ● CASS4 ● NME8 ● CELF1 SLC24A4/RIN5
KEY
● ● ● ● ● ●
Early-onset genes Innate immune/brain inflammatory response genes Endocytosis and cellular protein trafficking, including APP trafficking and Aβ processing Lipid transport/metabolism Synaptic transmission Cytoskeletal function, including tau No assigned mechanism of action
16 20
IMPP5D
We want to intervene as early as possible Abnormal FDG-PET MRI hippocampal volume Amyloid imaging
Cognitive performance Function (ADL)
Normal
Presymptomatic
eMCI
LMCI
Dementia
Time
Aisen PS, et al. (2010) Alzheimerâ&#x20AC;&#x2122;s Dement 6:239-246.
New technologies point the way Ab (PiB)
Tau (T807) Cognitively Normal
Cognitively Normal
AD Dementia
Sperling R, et al. Neuron. 2014.
Tracking Amyloid Build-Up Over Time Amyloid Increases Over 16 Months
Susan Resnick, PhD NIA/IRP
Early Identification is a Key Goal For example, a family in Colombia that develops AD early is generously working with researchers
Non-Carriers, late 30’s
Gene Carriers, late 30’s
Beta-amyloid, late 20’s
Dementia onset is in late 40’s
Fleisher, AS et al. (2012) Lancet Neurology 11(12):1057-65.
NIA’s Alzheimer’s-related Trials Explore Many Different Disease Pathways • Anti-amyloid therapies • Compounds that – Prevent loss of nerve connections – Restore function of damaged synapses – Promote new neuron growth
• Dietary and physical activity interventions • Blood pressure control • Repurposing of drugs
NIA’s Alzheimer’s-related Trials Explore Many Different Disease Pathways
Delivery Approaches: • Oral drugs • Intravenous infusions • Intranasal delivery
Caregiver Support: REACH •
Major Goal: Improve caregiver quality of life
•
Outcome: Significant improvement in depression, support, self-care, burden, difficult behaviors
•
Status: •
REACH VA - modified for TBI and spinal cord injury
•
REACH Community – program that offers training and certification in the REACH intervention o
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REACH into Indian Country – three-year initiative started in 2015 to offer training and certification for the REACH intervention to tribal and IHS caregivers
Hong Kong- the first international REACH adaptation coordinated by the Hong Kong Council of Social Service
Vidoni, ED et al. (2015) PLoS One 10(7):e0131647.
Vidoni, ED et al. (2015) PLoS One 10(7):e0131647.
SYNAPSE Study (Denise Park) Photography Class
Quilting Class
Park, DC et al.(2014) Psych Sci 25(1):103-12
SYNAPSE Results
Park, DC et al.(2014) Psych Sci 25(1):103-12.
The Busier the Better? Increases in busyness are associated with improved cognition
Festini, SB et al. (2016) Front Aging Neurosci 17;8:98
AHRQ-HMD Study â&#x20AC;˘ Two-part assessment of the science of prevention strategies for AD-type dementia, amnestic MCI, and age-related cognitive decline â&#x20AC;&#x201C; draft report will be released in October 2016
NIHâ&#x20AC;¦
Turning Discovery Into Health
Examining Models of Dementia Care
RTI International is a registered trademark and a trade name of Research Triangle Institute.
www.rti.org
Acknowledgement
This study was funded by ASPE under contract number HHSP23320100021W1
Rohini Khillan, MPH, was the project officer
All views expressed in this presentation are those of the authors and do not necessarily represent the views of ASPE or RTI International.
Project Team RTI International Joshua M. Wiener, PhD, Project Director Elizabeth Gould, MSW Sari Shuman, MPH, MSW Ramandeep Kaur, PhD Magdalena Ignaczak, BS Independent Consultant Katie Maslow, MSW
Introduction
More than 5 million Americans living with dementia; the number is projected to increase to 13.8 million by 2050 (Hebert et al., 2013; NIH, 2016)
Currently, no pharmacological treatments that significantly slow or stop the progression of Alzheimer’s disease; federal policy and funding is focused on finding a “cure”
People with dementia and their caregivers need care until a cure is found
Introduction (cont.)
Nonpharmacological approaches and care practices have been shown to have positive effects for some people with Alzheimer’s disease or other dementias
Although many organizations have guidelines on good dementia care, current systematic syntheses of those guidelines may be lacking
Little is known systematically about what services dementia programs provide across settings
Little known about how programs address desirable care components
Project Activities
Synthesize existing dementia care guidelines
Develop catalog of dementia care programs
Drawing from catalog of dementia care programs, conduct case studies of five programs to assess how they meet our dementia care guidelines
Conduct cross-site analyses and draw implications for dementia care and future research
Synthesize Existing Dementia Care Guidelines
Identified 37 sets of dementia care guidelines, which focused on structure and process rather than outcomes Identified 16 (later revised to 14) key domains Synthesized guideline recommendations into both high level and more specific recommendations Goal was standards that were profession-, setting- and dementia-stage free Care components reviewed by five experts in the field
Dementia Care Components 1. Detection of Possible Dementia
Examine for cognitive impairment when there is a decline from previous function in daily activities, occupational ability, or social engagement.
2. Diagnosis
Obtain a comprehensive evaluation and diagnosis from a qualified provider when cognitive impairment is suspected.
3. Assessment and Assess cognitive status, functional abilities, behavioral and Ongoing Reassessment psychological symptoms of dementia, medical status, living environment, and safety. Reassess regularly and when there is a significant change in condition. 4. Care Planning
Design a care plan that will meet care goals, satisfy the personâ&#x20AC;&#x2122;s needs, and maximize independence.
Dementia Care Components (cont.) 5. Medical Management
Deliver timely, individualized medical care to the person living with dementia, including prescribing medication and managing comorbid medical conditions in the context of the personâ&#x20AC;&#x2122;s dementia.
6. Information, Education, and Informed and Supported Decision Making
Provide information and education about dementia to support informed decision making, including end-of-life decisions.
7. Acknowledgement and Acknowledge and support the person with dementia. Emotional Support for the Allow the personâ&#x20AC;&#x2122;s values and preferences to guide all Person with Dementia aspects of the care. Balance family involvement with individual autonomy and choice.
Dementia Care Components (cont.) 8. Assistance for the Person Ensure that persons living with dementia have sufficient with Dementia with Daily assistance to perform essential health-related and Functioning and Activities personal care activities and to participate in activities that reflect their preferences and remaining strengths; help to maintain cognitive, physical, and social functioning for as long as possible; and support quality of life. Provide help as needed with medication management and pain control.
9. Involvement, Emotional Support, and Assistance for Family Caregiver(s)
Involve caregiver in evaluation, decision making, and care planning and encourage regular contact with providers. Provide culturally sensitive emotional support and assistance for the family caregiver(s).
Dementia Care Components (cont.) 10. Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia
Identify the causes of behavioral and psychological symptoms, and use nonpharmacological approaches first to address those causes. Avoid use of antipsychotics and other medications unless the symptoms are severe, create safety risks for the person or others, and have not responded to other approaches. Avoid physical restraints except in emergencies.
11. Safety for the Person with Dementia
Ensure safety for the person living with dementia. Counsel the person and family as appropriate about risks associated with wandering, driving, and emergency preparedness. Monitor for evidence of abuse and neglect.
Dementia Care Components (cont.) 12. Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia
Create a comfortable environment, including physical and social aspects that feel familiar and predictable to the person living with dementia and support functioning, a sustained sense of self, mobility, independence, and quality of life.
13. Care Transitions
Ensure appropriate and effective transitions across providers and care settings.
Dementia Care Components (cont.) 14 . Referral and Coordination of Care and Services that Match the Needs of the Person with Dementia and Family Caregiver(s) and Collaboration Among Agencies and Providers
Facilitate connections of persons with dementia and their family caregivers to individualized, culturally and linguistically appropriate care and services, including medical, other health related, residential, and home- and community-based services. When more than one agency or provider is caring for a person with dementia, collaborate among the various agencies and providers to plan and deliver coordinated care.
Identification of Models of Dementia Care
Conducted environmental scan to: –
Provide a catalog of interventions
–
Provide universe from which case studies could be selected
Included variety of settings―nursing homes, residential care facilities, home and community-based services, primary care, hospice, and caregiver support programs
Focus on evidence-based programs and interventions that have been translated to community settings
Identified 55 interventions, mostly community-based settings that provided support for caregivers
Case Studies
How do “real-life” programs address the 14 care components?
From pool of 55 interventions/programs, selected 5 programs for case studies
Range of type of program
Case Studies (cont.) Dementia Care Program BRI Care Consultationâ&#x201E;˘ (Cleveland, Ohio area)
Number of People Target Population Setting Served People with Telephone contacts Over 4,000 families dementia and family with people living at served through 10 caregivers home research studies
Comfort Mattersâ&#x201E;˘ (Phoenix, Arizona)
People with dementia
Assisted living and nursing home settings
Health Aging Brain People with Clinic and home Center (Indianapolis, dementia and family Indiana) caregivers
Not provided
703 in the home portion of the program and 1,500 in the clinic portion of the program
Case Studies (cont.) Dementia Care Program MIND at Home (Baltimore, Maryland) RCI REACH (Georgia)
Number of People Target Population Setting Served People with Telephone, e-mail, 408 individuals were dementia and family mail, and inenrolled, approximately caregivers person contacts 27 percent of people with people living initially referred at home Family caregivers of In-person or No exact number people with telephone providedâ&#x20AC;&#x2022;RCI provides dementia meetings for REACH training to over people living at 20 agencies in the United home States that are implementing the program
Case Study Findings ď&#x201A;§
None of the five programs had procedures to detect possible dementia in the general population
ď&#x201A;§
None of the five programs directly addressed all 14 components, but most of the programs addressed most of the components
ď&#x201A;§
Programs used three ways to address components: direct provision of the needed assistance; referral to another agency; and information, education, skills training, and encouragement to help family caregivers
Case Study Findings (cont.) ď&#x201A;§
All programs conducted assessment, reassessment, and care planning activities that facilitated the provision of individualized, person-centered care
ď&#x201A;§
Programs with medical staff were able to provide formal diagnosis of dementia. Other programs sometimes referred for diagnostic evaluations, but a formal diagnosis was not a prerequisite for participation in any programs
Case Study Findings (cont.) ď&#x201A;§
All programs provided assessment and ongoing reassessment, but the assessment instruments and procedures varied
ď&#x201A;§
Some of the programs provided medical management, and others did not
ď&#x201A;§
All programs assembled information on many relevant topics to educate persons with dementia and family caregivers and support decision-making
Case Study Findings (cont.) ď&#x201A;§
Four programs working with community-living people with dementia and their family caregivers interacted less often and less directly with persons with dementia than with family caregivers
ď&#x201A;§
At least two of the five programs have been disseminated to other sites across the country
Conclusions and Next Steps
Although there is no cure for Alzheimer’s disease, there are a substantial number of evidence-based interventions that have some effect, mostly on “softer” outcomes such as caregiver burden
Extremely large number of dementia care guidelines exist, but not quantitative measures.
Development of dementia care components is a major advance and should be disseminated and endorsed by relevant organizations
Conclusions and Next Steps (cont.)
With only five case studies, not possible to make definitive judgments; additional case studies would improve our understanding.
We found: – Most programs address the vast majority of dementia care
components, either directly or indirectly. – Most programs focused on caregivers rather than person
with dementia; residential and medical programs most likely to have substantial interaction with person with dementia.
Conclusions and Next Steps (cont.) â&#x20AC;&#x201C; Programs varied greatly in the degree to which they were
involved in medical management. â&#x20AC;&#x201C; Several programs had invested a great deal of effort into
developing a library of resources for people with dementia and caregivers; a federal initiative to do that might be appropriate.
Contact Information Joshua M. Wiener, PhD Distinguished Fellow RTI International 701 13th Street, NW Suite 750 Washington, DC 20005 jwiener@rti.org
Memory Care Symposium: Innovations from Care to Cure
New Beginnings: A Powerful Story of Advocacy and the NFL Sylvia Mackey Widow of NFL player John Mackey
Memory Care Symposium: Innovations from Care to Cure
Closing Remarks Maria Nadelstumph Brandywine Living & Chair Argentum Memory Care Committee
Questions?
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