An A- Z Guide to Simplify and Optimize Dementia Care Objectives • Understand the value of timely detection and learn simple approaches to cognitive screening in routine practice – Tools for health equity and cultural competence • Gain knowledge of best practices in medication and non-medication treatments for patients with dementia • Recognize key management priorities throughout the continuum of dementia • Understand the risks associated with caregiving and how to connect caregivers to evidence-based therapies, resources and services • Leave with a full clinical toolbox 2 Alzheimer’s Disease: Challenges and Opportunities Alzheimer’s: A Public Health Crisis • Scope of the problem – 5.2M Americans with AD in 2013 – Growing epidemic expected to impact 13.8M Americans by 2050 and consume 1.1 trillion in healthcare spending – Almost 2/3 are women (longer life expectancy) – If disease could be detected earlier incidence would be much higher • Pre-clinical stage 1-2 decades • Some populations at higher risk – Older African Americans (2x as whites) – Older Hispanics (1.5x as whites) Alzheimer’s Association Facts and Figures 2014 4 The Lens of Health Equity • Take into consideration health disparities and inequities • Seek the attainment of the highest level of health for all people • Help create a new style of “curb cut” by promoting cultural competence 5 Base Rates • 1 in 9 people 65+ (11%) • 1 in 3 people 85+ (32%) Age Range Percent with Alzheimer’s < 65 4% 65 -74 13% 75 -84 44% 85 + 38% Alzheimer’s Association Facts and Figures 2014 6 Patients with Dementia • A population with complex care needs 2.5 chronic conditions (average) 5+ medications (average) 3 times more likely to be hospitalized Many admissions from preventable conditions, with higher per person costs • Indisputable correlation between chronic conditions and costs Alzheimer’s Association Facts and Figures 2014 7 Challenges & Opportunities • AD poorly recognized by providers – Only 50% of patients receive formal diagnosis • Millions unaware they have dementia – Diagnosis often delayed on average by 6+ years after symptom onset – Significant impairment in function by time it is recognized • Poor timing: diagnosis frequently at time of crises, hospitalization, failure to thrive, urgent need for institutionalization Boise et al., 2004; Boustani et al., 2003; Boustani et al., 2005; Silverstein & Maslow, 2006 8 Diagnostic Challenges • Societal – Ageism, lack of understanding re: normal aging – Fear and stigma – Healthcare inequities – Expectation that MD will identify/diagnose health problems • Systemic/Institutional – Low priority – Few incentives – Lack of procedural support – Limited specialists available (e.g., neurology, neuropsychology) – May lack access to (or awareness of) community resources 9 Diagnostic Challenges • Medical – Time – Lack of definitive tests – Many patients unaware, do not self-identify symptoms – Skepticism re: efficacy of medication treatments – Limited cultural competence – Lack of awareness re: benefits of non-medication interventions – Fear of delivering wrong diagnosis, bad news – Implications for physician/patient relationship 10 Myth: People don’t want to know they have Alzheimer’s disease Fact: 100 90 80 Most people want advanced notice 70 60 % 50 40 30 20 10 0 Alz-Eu Harvard Turnbull Holroyd Blendon et al., 2012; Holroyd et al., 2002; Turnbull et al., 2003 Diagnostic Challenges International Physician Survey • Lack of definitive tests (65%, top barrier) • Lack of communication between patients / caregiver and physicians – 75% reported discussion initiated by patients/caregivers – 44% “after they suspected the disease had been present for a while” – 40% said patients/caregivers did not provide enough information to help them make a diagnosis • Patient / Family denial (65%) & social stigma (59%) International Alzheimer’s Disease Physician Survey, 2012 Diagnostic Challenges “Beyond mountains, there are mountains.” Haitian Proverb If we don’t diagnose, does it still exist? Rationale for Timely Detection 1. Patient Care / Outcomes 2. Time 3. Money 15 Patient Outcomes 1. Improved management of co-morbid conditions – Underlying dementia = risk factor for poor compliance with ALL treatment goals (e.g., diabetes, hypertension, CHF, anticoagulation) 2. Reduce ineffective, expensive, crisis-driven use of healthcare resources – Unnecessary hospitalization (dehydration/malnourishment, medication mismanagement, accidents and falls, wandering, etc.) 16 Patient Outcomes 3. Treat reversible causes – NPH, TSH, B12, hypoglycemia, depression 4. Improve quality of life – – Patients can participate in decisions regarding their future care Decrease burden on family and caregivers 5. Intervene to promote supported independence as long as possible – – RTC support/counseling intervention Non-pharm intervention reduces NH placement by 30% and delays placement for others by 18+ months Mittelman et al., 2006 17 Time • Simple screening tests can be done by rooming nurse – Brain as 6th vital sign • Recommended tool takes 1.5 – 3 minutes – • Only conducted annually and in context of signs and symptoms Mini-Cog does not disrupt workflow & increases capture rate of cognitive impairment in primary care Borson et al., 2007 18 Money • AD most expensive condition in the nation – • Cost effectiveness of early dx/tx? – • $203 billion in 2013, $1.2 trillion in 2050 Large scale studies ongoing Economic Models – No med known to alter costs of care – Disease education/support interventions increase caregiver capability, save money, and delay NH – Even if assume small # of people benefit (5%), $996 million in potential savings for MN over 15 years Alzheimer’s Association Facts and Figures 2014; Long et al., 2014 19 Impact of Optimal Practices Timely Detection • Reduces utilization through comorbidity management Post-Diagnosis Education and Support • Reduces behavioral symptoms • Delays institutionalization • Increases treatment plan compliance Effective Care Management • Delays institutionalization • Reduces neuropsychiatric symptoms • Reduces costs Team-Based Care • Reduces acute episodes • Improves health outcomes Care Transitions • Improves health outcomes • Improves care quality • Reduces hospital, ER utilization, and care costs Caregiver Engagement & Support • Improves overall well-being of person w/ dementia • Increases caregiving longevity and well-being 16 Changing National & Local Landscape • National Alzheimer’s Project Act (NAPA) – Awareness, readiness, dissemination, coordination • Annual Wellness Visit – For first time, “detection of cognitive impairment” is core feature of the exam • MN healthcare systems implementing tools – – – – HealthPartners Park Nicollet Essentia Allina 21 Rethinking Everyday Practice • Brain historically ignored, not a focus of routine exam – Is this logical? Consider base rates of dementia • Dementia is simply “brain failure” – Heart failure – Kidney failure – Liver failure • Brain as 6th Vital Sign 22 Introduction to ACT on Alzheimer’s ACT on Alzheimer’s statewide 300+ 60+ O R G A N I Z AT I O N S INDIVIDUALS volunteer driven collaborative I M PA C T S O F A L Z H E I M E R ’ S BUDGETARY SOCIAL PERSONAL 24 Collaborative Goals/Common Agenda Five shared goals with a Health Equity perspective 25 ACT Tool Kit • Consensus-based, best practice standards for Alzheimer’s care • Tools and resources for: – Primary care providers – Care coordinators – Community agencies – Patients and families 26 ACT Tools 27 ACT Tools 28 www.actonalz.org Clinical Practice Tips 30 Case Study: Sam • 76 y/o retired teacher (master’s degree) • Daughter c/o short-term memory is poor, patient acknowledges problem but does not feel it is significant – Repeats himself, multiple phone calls b/c can’t find belongings • • • • • • Other family members have noticed changes Began 2 years ago, getting worse Hx of hypertension and DM, both fairly well controlled Wife died unexpectedly last year, lives alone Conversational presentation fairly intact Oriented x3 but vague awareness of current events 31 Case Study: Colleen • • • • • 66 y/o retired accountant for family business Presents to primary care with memory complaints Daughter agrees that short-term memory is poor Began 2 years ago, seems to be worsening Hx of Low blood sugar, heart attack x1, repeat ER visits and hospitalizations for atrial flutter • Frequent medication changes, managing independently • Lives with husband who is still running the family business Signs and Symptoms of AD • • • • • • • • • • • • • Memory loss Confusion Disorientation to time or place Getting lost in familiar locations Impairment in speech/language Trouble with time/sequence relationships Diminished insight Poor judgment/problem solving Changes in sleep and appetite Mood/personality/behavior changes Wandering Deterioration of self care, hygiene Difficulty performing familiar tasks, functional decline Alzheimer’s Association, 2009 33 Practice Tips • Unfortunately, most of us do not recognize signs and symptoms until they are quite pronounced – Attribution error: “What do you expect? She is 80 years old.” – Subjective impressions FAIL to detect dementia in early stages • Clinical interview – Let patient answer questions without help – Remember: Social skills remain intact until late stage dementia – Easy to be fooled by a sense of humor, reliance on old memories, or quiet/affable demeanor Practice Tips • Red flags – – – – – – – Repetition (not normal in 7-10 min conversation) Tangential, circumstantial responses Losing track of conversation Frequently deferring answers to family member Over reliance on old information/memories Inattentive to appearance Unexplained weight loss or “failure to thrive” Practice Tips • Family observations: – ANY instances whatsoever of getting lost while driving, trouble following a recipe, asking same questions repeatedly, mistakes paying bills – Take these concerns seriously: by the time family report problems, symptoms have typically been present for quite a while and are getting worse • Raise your expectation of older adults: – If this patient was alone on a domestic flight across the country and the trip required a layover with a gate change, would he/she be able to manage that kind of mental task on his/her own? • If answer is “not likely” for a patient of any age: RED FLAG Practice Tips • Intact older adult should be able to: – Describe at least 2 current events in adequate detail (who, what, when, why, how) – Describe events of national significance • 9/11, New Orleans disaster, etc. – Name or describe the current President and an immediate predecessor – Describe their own recent medical history and report the conditions for which they take medication Cognitive Screening 38 Is Screening Good Medicine? 2014 US Preventative Services Task Force (USPSTF) • Purpose: Systematically review the diagnostic accuracy of brief cognitive screening instruments and the benefits/harms of medication and non-medication interventions for early cognitive impairment. • Limitation: Limited studies in persons with dementia other than AD and sparse reporting of important health outcomes. • Conclusion: Brief instruments to screen for cognitive impairment can adequately detect dementia, but there is no empirical evidence that screening improves decision making. Long et al., 2014 39 Provider Perspective “Avoiding detection of a serious and life changing medical condition just because there is no cure or ‘ideal’ medication therapy seems, at worst, incredibly unethical, and, at best, just bad medicine.” George Schoephoerster, MD Family Practice Physician 40 Clinical Provider Practice Tool • Easy button workflow for: 1. Screening 2. Dementia work-up 3. Treatment / care www.actonalz.org/provider-practice-tools 41 Cognitive Screening • Initial considerations – Timing • Routine, annual check-ups or only when patients become obviously symptomatic? – Best practice recommendation: Annual screening at 65+ – Screening meant to uncover insidious disease – Doesn’t add much if you can already detect impairment in basic conversation – Research • Which tools are best? • Balance b/w time and sensitivity/specificity Cognitive Screening – Clinic flow • Who will administer screen? – Rooming nurses, social workers, allied health professionals, MDs • What happens when patients fail? 43 Screening Measures • Wide range of options – – – – Mini-Cog™ (MC) Mini-Mental State Exam© (MMSE) St. Louis University Mental Status Exam™ (SLUMS) Montreal Cognitive Assessment™ (MoCA) • All but MMSE free, in public domain, and online Borson et al., 2000; Folstein et al., 1975; Nasreddine 2005; Tariq et al., 2006 Alternative Screening Tools • Virtually all screening tools based upon a euro-centric cultural and educational model • Consider: country and language of origin, type/quality/length of education, disabilities (visual, auditory, motor) • Alternative tools my be less biased 45 Screening Administration • Try not to: – Use the words “test” or “memory” • Instead: “We’re going to do something next that requires some concentration” – Allow patient to give up prematurely or skip questions – Deviate from standardized instructions – Offer multiple choice answers – Be soft on scoring – Score ranges already padded for normal errors – Deduct points where necessary – be strict Mini-Cog™ Contents • Verbal Recall (3 points) • Clock Draw (2 points) Advantages • Quick (2-3 min) • Easy • High yield (executive fx, memory, visuospatial) Borson et al., 2000 Subject asked to recall 3 words Leader, Season, Table +3 Subject asked to draw clock, set hands to 10 past 11 +2 DATE_________ ID_________________________AGE____GENDER M F LOCATION ______________________ TESTED BY________ MINI-COG ™ 1) GET THE PATIENT’S ATTENTION, THEN SAY: “I am going to say three words that I want you to remember now and later. The words are Banana Sunrise Chair. Please say them for me now.” (Give the patient 3 tries to repeat the words. If unable after 3 tries, go to next item.) (Fold this page back at the TWO dotted lines BELOW to make a blank space and cover the memory words. Hand the patient a pencil/pen). 2) SAY ALL THE FOLLOWING PHRASES IN THE ORDER INDICATED: “Please draw a clock in the space below. Start by drawing a large circle.” (When this is done, say) “Put all the numbers in the circle.” (When done, say) “Now set the hands to show 11:10 (10 past 11).” If subject has not finished clock drawing in 3 minutes, discontinue and ask for recall items. -------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------- -------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------------------------- ------------3) SAY: “What were the three words I asked you to remember?” _ Score the clock (see other side for instructions): (Score 1 point for each) 3-Item Recall Score Normal clock Abnormal clock Total Score = 3-item recall plus clock score 2 points 0 points Clock Score 0, 1, 2, or 3 = clinically important cognitive impairment likely; 4 or 5 = clinically important cognitive impairment unlikely 48 CLOCK SCORING NORMAL CLOCK A NORMAL CLOCK HAS ALL OF THE FOLLOWING ELEMENTS: All numbers 1-12, each only once, are present in the correct order and direction (clockwise). Two hands are present, one pointing to 11 and one pointing to 2. ANY CLOCK MISSING ANY OF THESE ELEMENTS IS SCORED ABNORMAL. REFUSAL TO DRAW A CLOCK IS SCORED ABNORMAL. SOME EXAMPLES OF ABNORMAL CLOCKS (THERE ARE MANY OTHER KINDS) Abnormal Hands Missing Number ................................................................................................................................................................................................................................. Mini-CogTM, Copyright S Borson. Reprinted with permission of the author, solely for clinical and teaching use. May not be modified or used for research without permission of the author (soob@uw.edu). All rights reserved. 49 Mini-Cog Pass • >4 Fail • 3 or less Borson et al., 2000 Mini-Cog Research • Performance unaffected by education or language • Borson Int J Geriatr Psychiatry 2000 • Sensitivity and specificity similar to MMSE (76% vs. 79%; 89% vs. 88%) • Borson JAGS 2003 • Does not disrupt workflow & increases rate of diagnosis in primary care • Borson JGIM 2007 • Failure associated with inability to fill pillbox • Anderson et al Am Soc Consult Pharmacists 2008 Mini-Cog: Sam http://youtu.be/CRQEighdb0w 52 Mini-Cog Scoring: Sam Mini-Cog Scoring: Sam Mini-Cog: Colleen http://youtu.be/DeCFtuD41WY 55 Colleen’s Clock Colleen’s Score Mini-Cog Exercise Form groups of 2 • Administer MiniCog to each other • Score sample clocks 58 Clock #1 Clock #2 Clock #3 Clock #4 Clock #5 Clock #6 Clock #7 Clock #8 Clock #9 SLUMS Tariq et al., 2006 SLUMS High School Diploma Less than 12 yrs education Pass > 27 > 25 Fail 26 or less 24 or less Tariq SH, Tumosa N, Chibnall et al. Comparison of the Saint Louis University mental status examination and the mini-mental state examination for detecting dementia and mild neurocognitive disorder--a pilot study. Am J Geriatr Psychiatry. 2006 Nov;14(11):900-10. 69 SLUMS: Colleen http://youtu.be/jyp0ShPiUH8?list=UUOPv8U5bHcdDCm4edmQDY9g 70 SLUMS Scoring: Colleen • Interactive scoring exercise 71 SLUMS Scoring: Colleen 72 SLUMS Scoring: Colleen 73 SLUMS Scoring: Colleen 74 MoCA Nasreddine et al., 2005 MoCA Pass • > 26 Fail • 25 or less Nasreddine 2005 76 MoCA: Sam http://youtu.be/ryf8SG0NQLQ?list=UUOPv8U5bHcdDCm4edmQDY9g 77 MoCA Scoring: Sam • Interactive scoring exercise 78 MoCA Scoring: Sam 79 MoCA Scoring: Sam 80 MoCA Scoring: Sam 81 MoCA Scoring: Sam 82 Screening Tool Selection Montreal Cognitive Assessment (MoCA) • Sensitivity: • Specificity: 90% for MCI, 100% for dementia 87% St. Louis University Mental Status (SLUMS) • Sensitivity: • Specificity: 92% for MCI, 100% for dementia 81% Mini-Mental Status Exam (MMSE) • Sensitivity: • Specificity: 18% for MCI, 78% for dementia 100% Larner 2012; Nasreddine et all, 2005; Tariq et al., 2006; Ismail et al., 2010 Family Questionnaire www.actonalz.org/pdf/Family-Questionnaire.pdf Cognitive Screening Flow Chart 85 Cognitive Impairment Identification Flow Chart 86 Dementia Work-up and Diagnosis 87 Dementia Work-Up 88 89 Dementia Work-Up • H&P • Objective cognitive measurement • Diagnostics – Labs – Imaging ? – More specific testing (e.g., neuropsychometric)? • Diagnosis • Family meeting Dementia Diagnoses FTD Alzheimer’s disease: 60-80 % • Includes mixed AD + VD Lewy Body Dementia Lewy Body Dementia: 10-25 % Vascular Dementia – Parkinson spectrum Alzheimer’s Disease Vascular Dementia: 6-10 % – Stroke related Frontotemporal Dementia: 2-5 % – Personality or language disturbance Delivering the Diagnosis • General guidelines: – Include a family member in the visit if at all possible – Talk directly to the person with dementia – Speak at a slower, relaxed pace using plain words • Try not to fill the time with words – less is more – Explain why tests were ordered and what results mean – Ask at least 3 times whether the patient / family has any questions – Acknowledge how overwhelming the information feels; provide empathy, support, reassurance 92 Delivering the Diagnosis • Focus on wellness, healthy living, and optimizing function – Sleep – Exercise – Social and mental stimulation – Nutrition and hydration – Stress reduction – Increase structure at home Zaleta & Carpenter 2010 93 Delivering the Diagnosis • Connect patient/family to community resources – Care for both patient and caregiver – Examples: Senior linkage line, Alzheimer’s Association • Discuss follow-up – Want to see patient and family member at regular intervals (e.g., q 6 months) for proactive care – Discuss involvement of care coordinator • Provide written summary of visit 94 Common Questions • • • • • How is Alzheimer’s different from dementia? Is there any treatment? What can we do? How fast is this going to progress? How often do we see you? What’s next? 95 Delivering the Diagnosis: Sam https://www.youtube.com/watch?v=vy2ZC5ZSZL8 96 Delivering the Diagnosis: Sam • Discussion – Observations? Reactions? – What was done well? – What could have been done differently, better? – What elements would you incorporate into your practice? – If Sam was American Indian what, if anything, would you do differently? 97 Dementia Care and Treatment 98 Care and Treatment 99 Care and Treatment 100 Treatment: Medications • Cholinesterase inhibitors – Donepezil, Rivastigmine, Galantamine, Cognex – Possible side effects: nausea, vomiting, syncope, dizziness, anorexia • NMDA receptor antagonist – Memantine – Possible side effects: tiredness, body aches, dizziness, constipation, headache 101 Care and Treatment • The care for patients with Alzheimer’s has very little to do with pharmacology and more to do with psychosocial interventions • Involve care coordinator • Connect patient and family to experts in the community – Example: Alzheimer’s Association – Refer every time, at any stage of disease, and for every kind of dementia – Stress this is part of their treatment plan and you expect to hear about their progress at next visit 102 After A Diagnosis - Partnering with doctors - Understanding the disease - Planning ahead - How to ask for help - Using community resources - Role of care coordinator ACT EMR Tools • Use EMR to automate and standardize: – Screening – Work-up – After visit summary with dementia education – Orders and referrals – Community supports www.actonalz.org/provider-practice-tools 104 Screening 105 Labs and Orders 106 Consults and Referrals 107 Consults and Referrals 108 Pharmacological Treatment 109 Managing Mid to Late Stage Dementia 110 Managing Dementia Across the Continuum www.actonalz.org/provider-practice-tools 111 Mood and Behavioral Symptoms • Neuropsychiatric symptoms common: – 60% of community dwelling patients with dementia – > 80% of nursing home residents with dementia • Nearly all patients with dementia will suffer from mood or behavioral symptoms during the course of their illness Ferri et al., 2005; Jeste et al., 2008 112 Adverse Outcomes • • • • • • Decreased quality of life Increased hospital length of stay Increased system-wide costs Increased caregiver distress, depression, burnout Independently associated with NH placement ? Increased mortality Jeste et al., 2008; Finkel et al., 1996 113 114 ACT to the Rescue! 115 Systematic Approach to Management • • • • Step 1: Step 2: Step 3: Step 4: Define behavior Categorize target symptom Identify reversible causes Use non-drug interventions first to treat target symptoms 116 Step 1: Define Behavior • Examples – Attention seeking behaviors • Verbal outbursts – Aggression during cares – Hitting, pushing, kicking – Sexual disinhibition – Restless motor activity, pacing, rocking – Calling out 117 Step 2: Categorize Target Symptom • Psychosis – Delusions – Hallucinations • Mood symptoms – – – – Anxiety Dysphoria Irritability Lability • Aggression • Spontaneous disinhibition 118 Step 3: Identify Reversible Causes • • • • • • • Delirium Untreated medical illness (e.g., UTI) Medication side effects, polypharmacy Environmental triggers Undiagnosed psychiatric illness Inexperienced caregivers Unrealistic expectations 119 Step 3: Identify Reversible Causes • Common root causes: – – – – – – Anxiety, fear or uncertainty Touch or invasion of personal space Loss of control, lack of choice Lack of attention to personal needs or wishes Frustration, grief due to loss of function or ability Pain or fear of pain Step 3: Identify Reversible Causes • Unmet needs – – – – – Boredom Meaning, purpose Over/under stimulation Safety Environmental stressors • Caregiver reactions – Limited knowledge about disease process or behaviors 121 Step 4: Non-pharmacologic Interventions • REMEMBER: behavior is communication • Think like a behavioral analyst – Detective work, ask: • • • • • Who (is involved/present) What (exact description, be specific) When (time dependent? only in morning? triggers?) Where (location specific?) Why (what happens right before, right afterwards? what do family think is cause?) – ABC approach (antecedent, behavior, consequence) 122 Step 4: Non-pharmacologic Interventions • Activity planning – Tap into preserved capabilities and previous interests – Involve repetitive motion • Communication – Slow down, offer simple choices – Help individual find words for self expression • Simplify Environment – Remove clutter, minimize stimuli during activity • Caregiver support – Self care, minimize confrontation/arguing with loved one – Identify support network Gitlin, et al., 2012 123 124 Pharmacological Treatment • • • • Antipsychotics Antidepressants Mood stabilizers Cognitive enhancers 125 Antipsychotic Medications in Dementia • 1952: First generation antipsychotic: haloperidol – Extrapyramidal symptoms – Tardive dyskinesia • 1989: Second generation antipsychotic: clozapine – Agranulocytosis • 1990’s: More second generation antipsychotics – Risperidone, olanzapine, quetiapine, ziprasidone, aripiprazole – Less motor side effects, better tolerated – Utilization of these agents broadens • THEN in 2005 … Jeste et al., 2008 126 2005 FDA Box Warning Elderly patients with dementiarelated psychosis treated with atypical antipsychotic drugs are at an increased risk of death compared to placebo. 127 Bottom Line with Atypical Antipsychotics • Modest efficacy in the treatment of psychotic and neuropsychiatric symptoms • Increased risk of negative outcomes: DEATH, STROKE, HIP FRACTURE, FALLS • Share the decision with healthcare proxies • Monitor: – Falls, orthostatic BP, EPS, tardive dyskinesia, glucose – Regularly attempt to wean/discontinue 128 Optimizing Medication Therapy Professional Resources • AGS Beers Criteria (2012) • START (Screening Tool to Alert Doctors to the Right Treatment) • STOPP (Screening Tool of Older Persons’ Potentially inappropriate Prescriptions) 129 Advanced Care Planning • Discussion of goals of care, values • Identification AND engagement of HCPOA – Honoring Choices – PREPARE • Introduce concept of palliative care, educate about hospice • Document in EMR, healthcare directive • Provider Orders for Life Sustaining Treatment (POLST) 130 Assessing Caregiver/Family Needs • Be alert for signs of: – Burnout, depression, neglected self-care, elder abuse • Promote: – Respite services – Support groups – Activities to optimize health and well-being • Refer to one-stop-shop for support: – Alzheimer’s Association – Senior Linkage Line 131 Patient Engagement: Research Participation • Alzheimer’s Association Trial Match – Free, easy-to-use clinical studies matching service that connects individuals with Alzheimer's, caregivers, healthy volunteers and physicians with current studies. – http://www.alz.org/research/clinical_trials/find _clinical_trials_trialmatch.asp • National Institute of Health (NIH) – http://clinicaltrials.gov 132 HIPAA: Q&A • HIPAA (Health Insurance Portability and Accountability Act) • Federal law that protects medical information • Allows only certain people to see information – Doctors, nurses, therapists and other health care professionals on the patient’s medical team – Family caregivers and others directly involved with a patient’s care (unless the patient says he/she does not want this information shared with others) www.nextstepsincare.org, United Hospital Fund, 2002 133 HIPAA: Sharing Patient Information • If the patient is present and has the capacity to make health care decisions: – Health care providers may discuss the patient’s health information with a family member, friend, or other person if the patient agrees or, when given the opportunity, does not object. • If patient is not present or is incapacitated: – Health care providers may share the patient’s information with family, friends or others as long as the provider determines (based on professional judgment) that it is in the best interest of the patient. www.nextstepsincare.org, United Hospital Fund, 2002 134 Top 5 Resources for Patients and Families 135 #1 Promoting Wellness & Function 136 #2 Addressing Behavioral Challenges 137 #3 Caregiver Support Alzheimer’s Association 800.272.3900 | www.alz.org/mnnd One stop shop for: – Care Consultation – Support Groups (Memory Club) – 24/7 Helpline 138 #4 In-depth Caregiver Training Family Memory Care Program 800.272.3900 • 4+ months of 1:1 support, care coordination • Individual and family meetings • Dementia-capable trained clinician 139 #5 Medication Review PharmD Consult • Medication review, simplification • Reminder strategies • Family support, supervision 140 ACKNOWLEDGEMENTS This project is/was supported by funds from the Bureau of Health Professions (BHPr), Health Resources and Services Administration (HRSA), Department of Health and Human Services (DHHS) under Grant Number UB4HP19196 to the Minnesota Area Geriatric Education Center (MAGEC) for $2,192,192 (7/1/2010—6/30/2015). 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Know the 10 signs.http://www.alz.org/national/documents/checklist_10signs.pdf Coach Broyles Playbook on Alzheimer’s: http://www.caregiversunited.com Honoring Choices Minnesota:http://www.honoringchoices.org Living Well workbook:http://www.alz.org/documents/mndak/alz_living_well_workbook_2011v2_web.pdf Medicare Annual Wellness Visit: http://www.cms.gov/Outreach-and-Education/Medicare-Learning-NetworkMLN/MLNMattersArticles/downloads/MM7079.pdf MiniCog™ http://www.alz.org/documents_custom/minicog.pdf Montreal Cognitive Assessment (MoCA)http://www.mocatest.org National Alzheimer’s Project Act: http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf Next Step in Care: http://www.nextstepincare.org Physician Orders for Life Sustaining Treatment (POLST): http://www.polst.org St. Louis University Mental Status (SLUMS) examinationhttp://medschool.slu.edu/agingsuccessfully/pdfsurveys/slumsexam_05.pdf The Alzheimer’s Action Plan:http://www.amazon.com/The-Alzheimers-Action-Plan-Know/dp/0312538715 Understanding Difficult Behaviors:http://www.amazon.com/Understanding-Difficult-Behaviors-suggestionsAlzheimers/dp/0978902009 145