an a- z guide for working with patients with memory loss and dementia

An A- Z Guide for Working with Patients with Memory Loss and Dementia

Objectives 1.Gain proficiency in brief cognitive screening to help improve detection of memory loss among older patients 2.Describe evidence-based medication and non- medication interventions known to improve outcomes among patients with dementia and their care partners 3.Learn how to best support patients and care partners in accessing services throughout the continuum of the disease 4.Identify common health risks associated with caregiving and address the unique needs of dementia caregivers 5.Recognize how to incorporate health equity principles into dementia assessment, diagnosis and care 2

Introduction to ACT on Alzheimers

What is ACT on Alzheimers? statewide collaborative volunteer driven 60+ ORGANIZATIONS 500+ INDIVIDUALS IMPACTS OF ALZHEIMERS BUDGETARYSOCIAL PERSONAL

Collaborative Goals/Common Agenda 5 shared goals with a Health Equity perspective 5

ACT Tool Kit Evidence- and consensus- based best practice standards for Alzheimers care Tools and resources for: Primary care providers Care coordinators Community agencies Patients and care partners 6 www.actonalz.org/provider-practice-tools

Health Care Settings: Care Coordination www.actonalz.org/provider-practice-tools

Dementia and Alzheimers 8

FAQ What is the difference between dementia and Alzheimers disease?

Dementia Diagnoses Alzheimers disease: 60-80 % Includes mixed AD + VD Lewy Body Dementia: 10-25 % Parkinson spectrum Vascular Dementia: 6-10 % Stroke related Frontotemporal Dementia: 2-5 % Personality or language disturbance

Alzheimers Disease: Challenges and Opportunities

Alzheimers: A Public Health Crisis Scope of the problem 5.3M Americans with AD in 2015 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) 12 Alzheimers Association Facts and Figures 2015

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 13

Base Rates 1 in 9 people 65+ (11%) 1 in 3 people 85+ (32%) 14 Age RangePercent with Alzheimers < 654%4% 65 -7413% 75 -8444% 85 +38% Alzheimers Association Facts and Figures 2014

Challenges & Opportunities AD under-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 15 Boise et al., 2004; Boustani et al., 2003; Boustani et al., 2005; Silverstein & Maslow, 2006

A population with complex care needs Indisputable correlation between chronic conditions and costs Patients with Dementia 16 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 Alzheimers Association Facts and Figures 2014

Cognitive Impairment ID

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 Chart Review: memory concerns, forgetfulness, memory complaints; emergency contact is main contact; Aricept / Donepezil or other ACHI in record Ask How are you xxx? instead of Are you xxx? 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 22

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 23

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 25

Screening Administration Try not to: Use the words test or memory Instead: Were 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) Subject asked to recall 3 words Leader, Season, Table Subject asked to draw clock, set hands to 10 past 11 +3 +2 Borson et al., 2000

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

Case Study: Colleen 66 y/o presents to primary care with memory complaints Daughter c/o short-term memory is poor Began 1-2 years ago, getting worse Hx Low blood sugar, history of heart attack, repeat hospitalizations for atrial flutter Frequent medication changes, managing independently Patient is a retired accountant for family business Lives with husband who is still running the family business Referred to Care Coordination

Mini-Cog: Colleen 33 http://youtu.be/DeCFtuD41WY

Colleens Clock

Colleens Score

Mini-Cog Exercise Form groups of 2 Administer MiniCog to each other Score sample clocks 36

Clock #1

Clock #2

Clock #3

Clock #4

Clock #5

Clock #6

Clock #7

SLUMS Tariq et al., 2006

SLUMS High School DiplomaLess than 12 yrs education Pass> 27> 25 Fail26 or less24 or less 45 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.

SLUMS: Colleen 46 http://youtu.be/jyp0ShPiUH8?list=UUOPv8U5bHcdDCm4edmQDY9g

SLUMS Scoring: Colleen 47

MoCA Nasreddine et al., 2005

MoCA Pass > 26 Fail 25 or less 51 Nasreddine 2005

MoCA: Sam 52 http://youtu.be/ryf8SG0NQLQ?list=UUOPv8U5bHcdDCm4edmQDY9g

MoCA Scoring: Sam Interactive scoring exercise 53

MoCA Scoring: Sam 54

Screening Tool Selection Montreal Cognitive Assessment (MoCA) Sensitivity: 90% for MCI, 100% for dementia Specificity: 87% St. Louis University Mental Status (SLUMS) Sensitivity: 92% for MCI, 100% for dementia Specificity: 81% Mini-Mental Status Exam (MMSE) Sensitivity: 18% for MCI, 78% for dementia Specificity: 100% Larner 2012; Nasreddine et all, 2005; Tariq et al., 2006; Ismail et al., 2010

Family Questionnaire www.actonalz.org/pdf/Family-Questionnaire.pd f

AD8 Dementia Interview http://knightadrc.wustl.edu/About_Us/PDFs/AD8form2005.pdf

Dementia Work-up, Diagnosis and Treatment for Providers 61

Dementia Work-Up H&P Objective cognitive measurement Diagnostics Labs Imaging ? More specific testing (e.g., neuropsychometric)? Diagnosis Family meeting

Treatment: Medications Anticholinergics 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 63

Treatment: Medications Antipsychotics Antidepressants Mood stabilizers 64

Care and Treatment The care for patients with Alzheimers has very little to do with pharmacology and much to do with psychosocial interventions Care Coordination 65

Dementia Care Coordination 66

Care Coordination What are some of the challenges you face when working with people with dementia and their families? 67

ACT Practice Tool

Dementia Care Plan Checklist

Identify Care Partner(s) Inform the patient that this disease requires a team approach Ask the patient to identify team members or care partners Be task specific (e.g., doctor visits, medication management) Think outside the box / family (e.g., friends, neighbors, religious congregation members, colleagues, community organization volunteers or workers) 70

Comprehensive Assessment 71

Comprehensive Assessment HCH Care Coordination Tool Kit: http://mn4a.org/wp- content/uploads/HCH-Clinic- Coordinator-Toolkit_3-19- 15_ADA-FINAL.pdfhttp://mn4a.org/wp- content/uploads/HCH-Clinic- Coordinator-Toolkit_3-19- 15_ADA-FINAL.pdf 72

Comprehensive Assessment Patient & Primary Care Partner / Caregiver Identify language, cultural, health equity barriers Identify physician(s) Assess substance use / misuse Behavioral health, depression PHQ9, CES-D, GDS 73

Comprehensive Assessment Primary Care Partner / Caregiver Consider assessing cognition (if over 65 or signs / symptoms present) Caregiver burden (Zarit Burden Interview Short) http://www.uconn- aging.uchc.edu/patientcare/memory/pdfs/zarit_ burden_interview.pdf http://www.uconn- aging.uchc.edu/patientcare/memory/pdfs/zarit_ burden_interview.pdf 74

Care Plan 75

Care Plan Tool Highlights Disease Education Medication Therapy and Management Maximize Abilities Health, Wellness and Engagement Home & Personal Safety Legal Planning Advance Care Planning 76

Disease Education ASK the patient / care partner: What the doctor told them about their memory loss / diagnosis What they know about the disease / questions about the diagnosis / disease Biggest concerns; barriers to care / health 77

Education Resources for Patients & Caregivers 78

Disease Education: Print Materials 79

After A Diagnosis -Partner with doctors -Understand the disease -Use team approach -Plan ahead -Ask for help -Use community resources -Role of care coordinator http://www.actonalz.org/sites/default/file s/documents/ACT-AfterDiagnosis.pdf

Disease Education 81 http://youtu.be/zEst_VxwA4U

Taking Action Workbook -Understanding the disease -Partnering with doctors -Telling others about the diagnosis -Strategies for managing symptoms & coping -Safety -Legal / financial issues http://www.alz.org/documents/mndak/taki ng_action_workbook.pdf

Education for Care Coordinators 83

Disease Education: Facts & Figures 84 https://youtu.be/kcI5UVwFyN0

Stages of Alzheimers Disease

Disease Education: What is AD? 86 http://youtu.be/ECbjK4Ra-Ys

Maximize Abilities 87 Identify / treat conditions that may worsen symptoms or lead to poor outcomes Diabetes, HTN, sleep dysregulation Encourage patient to stop smoking / limit alcohol Refer to OT to maximize independence (e.g., simplify environment, maximize independence & self-care abilities) Educate families on communication and approach to prevent or reduce dementia-related behavioral symptoms

Medication Therapy & Management 88 Discuss prescribed and OTC medications simplify medication regimen reduce / eliminate anticholinergics, benzodiazepines, hypnotics, narcotics Create plan with care team Family plan for managing meds Med management aids (pill boxes, alarms) Create & review medication log

Medication Therapy & Management 89

Health, Wellness & Engagement 90 Encourage lifestyle changes that may reduce disease symptoms or slow progression -Exercise -Nutrition -Stress reduction -Meaning & purpose -Relationships -Health management -Routine http://www.alz.org/documents/mndak/alz_living_well_workbook_2011v2_web.pdf

Maximize Abilities: Routine 91

Patient Engagement: Research Participation Alzheimers 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 http://www.alz.org/research/clinical_trials/find _clinical_trials_trialmatch.asp National Institute of Health (NIH) http://clinicaltrials.gov http://clinicaltrials.gov 92

Home & Personal Safety 93 Educate & develop a plan for 5 Fs: fire, falls, firearms, finances, freeways Refer to OT or PT Fall risk assessment Sensory / mobility aids Home safety inspection / modifications Driving evaluation Encourage emergency plans (phone numbers, hospital, fire, POLST/med list by bed, etc.) Encourage enrollment in Medic Alert Safe Return

Role of Hospitalization More preventable hospitalizations Higher rates of delirium, falls, new incontinence, indwelling urinary catheters, pressure ulcers, functional decline & new feeding tubes Significantly less likely to regain preadmission functional abilities at 1 month, 3 months, or 1 year after discharge 3-7 times more likely to be living in a nursing home 3 months after discharge. 94

Role of Hospitalization Reduce Unnecessary Hospitalization Falls UTI / other medical conditions Medications / medication mismanagement Dementia-related behavior Hospitalization alternatives Hospitalization Pre-Planning http://www.nia.nih.gov/alzheimers/publication/hosp italization-happens http://www.nia.nih.gov/alzheimers/publication/hosp italization-happens http://www.aaa1c.org/docs/healthtips/Hospital_Visi ts_for_People_with_ALZ.pdf http://www.aaa1c.org/docs/healthtips/Hospital_Visi ts_for_People_with_ALZ.pdf 95

Legal & Advance Care Planning 96 Encourage patient / care partner to assign health care and durable POA Refer to elderlaw attorney Encourage patient to discuss / document preferences for care Honoring Choices MN Healthcare Directive POLST In mid-stage, discuss palliative and hospice options

Visit Frequency & Communication 97 Schedule regular check-ins Educate patient / care partner WHEN to contact you Changes in condition Assistance with med management Before / after hospitalization Change in living environment New needs

Visit Frequency & Communication 98 Facilitate physician appointments Reminders, transportation Educate on physician engagement strategies Encourage care partner(s) to attend medical appointments Educate about HIPAA, as needed Educate on use of appointment log, medication log

Appointment Log

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 patients medical team Family caregivers and others directly involved with a patients care (unless the patient says he/she does not want this information shared with others) 100 www.nextstepincare.org/Caregiver_Home/HIPAA/ United Hospital Fund, 2002

HIPAA: Sharing Patient Information If the patient is present and has the capacity to make health care decisions, a health care provider may discuss the patients health information with a family member, friend, or other person if the patient agrees or, when given the opportunity, does not object. If the patient is not present or is incapacitated, a health care provider may share the patients information with family, friends or others as long as the health care provider determines, based on professional judgment, that it is in the best interest of the patient. 101 www.nextstepincare.org/Caregiver_Home/HIPAA/ United Hospital Fund, 2002

Caregiver Support 102

Dementia Caregiving Risks Physical risks: caregiving increases the risk of health problems Social risks: caregivers frequently suffer from feelings of social isolation Psychological risks: caregivers are at increased risk of depression and burden Financial risks: caregiving places significant financial burdens on caregivers due to lost wages and cost of care

Care Plan: Caregiver Support Providing support for dementia caregivers is a societal imperative 70% of individuals with Alzheimers disease live at home In 2012, an estimated 15 million unpaid caregivers provided an estimated 17.5 billion hours of unpaid care The health care system could not sustain the cost of care without unpaid caregivers

Common Caregiver Challenges 105 Lack of disease knowledge / education Emotional stress, burden Need for support and respite Role changes Challenging family dynamics Communication difficulties Neglected health Putting patient needs first Challenging patient behaviors Planning for the future

Caregiver Support There is a strong correlation between the health and well-being of a care partner and the quality of care that she can provide. A care partner with a balanced outlook and good self-care practices can provide care for longer periods of time while maintaining his own health and well-being.

Top 5 Resources for Patients and Families 107

#1Promoting Wellness & Function 108

#2Addressing Behavioral Challenges 109

#3: Addressing Driving 110 Alzheimers Association Driving Center: www.alz.org/care/alzheimers-dementia-and- driving.asp http://www.thehartford.com/sites/thehartford/files/at- the-crossroads-2012.pdf

#4Planning Assistance 111

#5Connect to Resources 112 Alzheimers Association 24/7 Helpline | 800.272.3900 www.alz.org/mnnd www.alz.org/mnnd Senior LinkAge Line 800-333-2433 www.minnesotahelp.info www.minnesotahelp.info

Case Studies 113

Case Study: Colleen 66 y/o presents to primary care with memory complaints Daughter c/o short-term memory is poor Began 1-2 years ago, getting worse Hx Low blood sugar, history of heart attack, repeat hospitalizations for atrial flutter Frequent medication changes, managing independently Patient is a retired accountant for family business Lives with husband who is still running the family business Referred to Care Coordination

Case Example: Medications 115 https://youtu.be/3lp0n9DOEWQ

Care Coordination: Colleen Discussion Observations? What did you notice? What was done well? What could have been done differently, better? What might you incorporate into your practice? What recommendations / referrals would you make to Colleen? What might you do differently if Colleen was not a native English speaker or was from a diverse cultural community? 116

Case Example: Legal Planning 117 https://youtu.be/a-gIojhzGOY

Care Coordination: Colleen Discussion Observations? What did you notice? What was done well? What could have been done differently, better? What might you incorporate into your practice? What recommendations / referrals would you make to Colleen? What might you do differently if Colleen was not a native English speaker or was from a diverse cultural community? 118

Watch the Complete Session: 119 https://youtu.be/5Kxj-5Ezlzw?list=PLGu3PyEblnIKVrTqVj9NzR5f_fcCbTd9T

Care Plan Exercise In small groups, develop a 3-5 step care plan for Colleen and her family. Consider: Which areas of the care plan tool should be incorporated in the plan? What educational materials would you give? What referrals would you make? When would you like to see the patient again? How would you communicate the plan to the care team (physicians, family, patient, etc.)

Questions? Download ACT on Alzheimers practice tools at: www.ACTonALZ.org/provider-practice-tools www.ACTonALZ.org/provider-practice-tools For more information email: [email protected]@ACTonALZ.org Web: www.ACTonALZ.orgwww.ACTonALZ.org 121

Questions 122

Evaluation 123

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 (7/1/20106/30/2015). This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by the BHPr, HRSA, DHHS or the U.S. Government. Minnesota Area Geriatric Education Center (MAGEC) Grant #UB4HP19196 Director: Robert L. Kane, MD Associate Director: Patricia A. Schommer, MA

References & Resources 2012 Updated AGS Beers Criteria: http://www.americangeriatrics.org/files/documents/beers/2012BeersCriteria_JAGS.pdf http://www.americangeriatrics.org/files/documents/beers/2012BeersCriteria_JAGS.pdf After a Diagnosis (ACT): http://www.actonalz.org/sites/default/files/documents/ACT-AfterDiagnosis.pdfhttp://www.actonalz.org/sites/default/files/documents/ACT-AfterDiagnosis.pdf Alzheimers Association Basics of Alzheimers Disease: https://www.alz.org/national/documents/brochure_basicsofalz_low.pdfhttps://www.alz.org/national/documents/brochure_basicsofalz_low.pdf Caregiver Notebook - http://www.alz.org/care/alzheimers-dementia-caregiver-notebook.asphttp://www.alz.org/care/alzheimers-dementia-caregiver-notebook.asp Driving Center: www.alz.org/care/alzheimers-dementia-and-driving.aspwww.alz.org/care/alzheimers-dementia-and-driving.asp Facts & Figures video: http://youtu.be/waeuks1-3Z4http://youtu.be/waeuks1-3Z4 Facts & Figures Report: https://www.alz.org/facts/downloads/facts_figures_2015.pdfhttps://www.alz.org/facts/downloads/facts_figures_2015.pdf Family Questionnaire: http://www.alz.org/mnnd/documents/Family_Questionnaire.pdfhttp://www.alz.org/mnnd/documents/Family_Questionnaire.pdf Know the 10 Signs. http://www.alz.org/national/documents/checklist_10signs.pdfhttp://www.alz.org/national/documents/checklist_10signs.pdf Living with Alzheimers Mid Stage: https://www.alz.org/documents_custom/middle-stage-caregiver-tips.pdfhttps://www.alz.org/documents_custom/middle-stage-caregiver-tips.pdf Living with Alzheimers Late Stage: https://www.alz.org/documents_custom/late-stage-caregiver-tips.pdfhttps://www.alz.org/documents_custom/late-stage-caregiver-tips.pdf Living Well workbook:http://www.alz.org/documents/mndak/alz_living_well_workbook_2011v2_web.pdfhttp://www.alz.org/documents/mndak/alz_living_well_workbook_2011v2_web.pdf Taking Action Workbook: http://www.alz.org/mnnd/documents/2010_taking_action_e-book(1).pdfhttp://www.alz.org/mnnd/documents/2010_taking_action_e-book(1).pdf Trial Match: http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asphttp://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp 125

References & Resources AD8 Dementia Screening Interview: http://knightadrc.wustl.edu/About_Us/PDFs/AD8form2005.pdfhttp://knightadrc.wustl.edu/About_Us/PDFs/AD8form2005.pdf At the Crossroads: http://www.thehartford.com/sites/thehartford/files/at-the-crossroads-2012.pdfhttp://www.thehartford.com/sites/thehartford/files/at-the-crossroads-2012.pdf Caring for a Person with Alzheimers Disease: http://www.nia.nih.gov/sites/default/files/caring_for_a_person_with_alzheimers_disease_0.pdf http://www.nia.nih.gov/sites/default/files/caring_for_a_person_with_alzheimers_disease_0.pdf Coach Broyles Playbook on Alzheimers: http://www.caregiversunited.comhttp://www.caregiversunited.com Honoring Choices Minnesota: http://www.honoringchoices.orghttp://www.honoringchoices.org Health Care Directive (MN): http://www.ag.state.mn.us/pdf/consumer/healtcaredir.pdfhttp://www.ag.state.mn.us/pdf/consumer/healtcaredir.pdf Hospitalization Happens: http://www.nia.nih.gov/sites/default/files/hospitalization_happens_0.pdfhttp://www.nia.nih.gov/sites/default/files/hospitalization_happens_0.pdf Medicare Annual Wellness Visit: http://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network- MLN/MLNMattersArticles/downloads/MM7079.pdfhttp://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network- MLN/MLNMattersArticles/downloads/MM7079.pdf MiniCog http://www.alz.org/documents_custom/minicog.pdfhttp://www.alz.org/documents_custom/minicog.pdf MN Health Care Home Care Coordination Tool Kit: http://www.health.state.mn.us/healthreform/homes/collaborative/lcdocs/cliniccarecoordtoolkit.pdf http://www.health.state.mn.us/healthreform/homes/collaborative/lcdocs/cliniccarecoordtoolkit.pdf Montreal Cognitive Assessment (MoCA)http://www.mocatest.orghttp://www.mocatest.org National Alzheimers Project Act: http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdfhttp://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf Next Step in Care: http://www.nextstepincare.orghttp://www.nextstepincare.org Physician Orders for Life Sustaining Treatment (POLST): http://www.polst.orghttp://www.polst.org 126

References & Resources St. Louis University Mental Status (SLUMS) examination http://medschool.slu.edu/agingsuccessfully/pdfsurveys/slumsexam_05.pdf http://medschool.slu.edu/agingsuccessfully/pdfsurveys/slumsexam_05.pdf The Alzheimers Action Plan:http://www.amazon.com/The-Alzheimers-Action-Plan-Know/dp/0312538715http://www.amazon.com/The-Alzheimers-Action-Plan-Know/dp/0312538715 Understanding Difficult Behaviors:http://www.amazon.com/Understanding-Difficult-Behaviors-suggestions- Alzheimers/dp/0978902009http://www.amazon.com/Understanding-Difficult-Behaviors-suggestions- Alzheimers/dp/0978902009 Zarit Caregiver Burden Interview: http://www.uconn- aging.uchc.edu/patientcare/memory/pdfs/zarit_burden_interview.pdfhttp://www.uconn- aging.uchc.edu/patientcare/memory/pdfs/zarit_burden_interview.pdf 127

References & Resources Alzheimers Association (2014). Alzheimers Disease Facts and Figures, Alzheimers & Dementia, Volume 10, Issue 2. Anderson K, Jue S & Madaras-Kelly K 2008. Identifying Patients at Risk for Medication Mismanagement: Using Cognitive Screens to Predict a Patient's Accuracy in Filling a Pillbox. The Consultant Pharmacist, 6(14), 459-72. Barry PJ, Gallagher P, Ryan C, & Omahony D. (2007). START (screening tool to alert doctors to the right treatment)--an evidence-based screening tool to detect prescribing omissions in elderly patients. Age and Ageing, 36(6): 632-8. Blendon RJ, Benson JM, Wikler, EM, Weldon, KJ, Georges, J, Baumgart, M, Kallmyer B. (2012). The impact of experience with a family member with Alzheimers disease on views about the disease across five countries. International Journal of Alzheimers Disease, 1-9. Boise L, Neal MB, & Kaye J (2004). Dementia assessment in primary care: Results from a study in three managed care systems. Journals of Gerontology: Series A; Vol 59(6), M621-26. Borson S, Scanlan J, Brush M, Vitaliano P, Dokmak A. (2000). The mini-cog: a cognitive vital signs measure for dementia screening in multi-lingual elderly. Int J Geriatr Psychiatry, 15(11):1021-1027. Borson S, Scanlan JM, Chen P, Ganguli M. (2003). The Mini-Cog as a screen for dementia: validation in a population-based sample. J Am Geriatr Soc;51(10):1451-1454. Borson S, Scanlan J, Hummel J, Gibbs K, Lessig M, & Zuhr E (2007). Implementing Routine Cognitive Screening of Older Adults in Primary Care: Process and Impact on Physician Behavior. J Gen Intern Med; 22(6): 811817. Boustani M, Peterson B, Hanson L, et al. (2003). Systematic evidence review. Agency for Healthcare Research and Quality; Rockville, MD: Screening for dementia. Boustani M, Callahan CM, Unverzagt FW, Austrom MG, Perkins AJ, Fultz BA, Hui SL, Hendrie HC (2005). Implementing a screening and diagnosis program for dementia in primary care. J Gen Intern Med. Jul; 20(7):572-7. Ferri CP, Prince M, Brayne C, et al. (2005). Alzheimers Disease International Global prevalence of dementia: A Delphi consensus study. Lancet, 366: 21122117. 128

References & Resources Finkel, SI (Ed.) (1996). Behavioral and Psychological Signs of Dementia: Implications for Research and Treatment. International Psychogeriatrics, 8(3). Folstein MF, Folstein SE, & McHugh PR (1975). "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res, Nov 12(3):189-98. Gallagher P & OMahony D (2008). STOPP (Screening Tool of Older Persons potentially inappropriate Prescriptions): Application to acutely ill elderly patients and comparison with Beers criteria. Age and Ageing, 37(6): 673-9. Gitlin LN, Kales HC, Lyketsos CG, & Plank Althouse E (2012). Managing Behavioral Symptoms in Dementia Using Nonpharmacologic Approaches: An Overview. JAMA, 308(19): 2020-29. Holroyd S, Turnbull Q, & Wolf AM (2002). What are patients and their families told about the diagnosis of dementia? Results of a family survey. Int J Geriatr Psychiatry, Mar;17(3):218-21. Ismail Z, Rajji TK, & Shulman KI (2010). Brief cognitive screening instruments: An update. Int J Geriatr Psychiatry, 25:11120. Jeste DV, Blazer D, Casey D et al. (2008). ACNP White Paper: Update on Use of Antipsychotic Drugs in Elderly Persons with Dementia. Neuropsychopharmacology, 33(5): 957-70. Larner AJ (2012). Screening utility of the Montreal Cognitive Assessment (MoCA): In place of or as well as the MMSE? Intern Psychogeriatrics, 24, 391396. Lin JS, OConnor E, Rossom RC, Perdue LA, Burda BU, Thompson M, & Eckstrom E (2014). Screening for Cognitive Impairment in Older Adults: An Evidence Update for the U.S. Preventive Services Task Force. Agency for Healthcare Research and Quality, Evidence Syntheses, 107. Long KH, Moriarty JP, Mittelman MS, & Foldes SS (2014). Estimating The Potential Cost Savings From The New York University Caregiver Intervention In Minnesota. Health Affairs, 33(4), 596-604. McCarten JR, Anderson P Kuskowski MA et al. (2012). Finding dementia in primary care: The results of a clinical demonstration project. J Am Geritr Soc;60(2):210-217. 129

Mittelman MS, Haley WE, Clay OJ, & Roth DL (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, November 14(67 no. 9), 1592-1599. Nasreddine ZS, Phillips NA, Bdirian V, Charbonneau S, Whitehead V, Collin I, Cummings JL, & Chertkow H. (2005). The Montreal Cognitive Assessment, MoCA: A Brief Screening Tool For Mild Cognitive Impairment. J Amer Ger Soc, 53(4), 695- 99. National Chronic Care Consortium and the Alzheimers Association. 1998. Family Questionnaire. Revised 2003. Silverstein NM & Maslow K (Eds.) (2006). Improving Hospital Care for Persons with Dementia. New York: Springer Publishing CO. Tariq SH, Tumosa N, Chibnall JT, Perry MH, & Morley E. (2006). 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, Nov;14(11):900-10. Turnbull Q, Wolf AM, & Holroyd S (2003). Attitudes of elderly subjects toward truth telling for the diagnosis of Alzheimers disease. J Geriatr Psychiatry Neurol, Jun;16(2):90-3. Zaleta AK & Carpenter BD (2010). Patient-Centered Communication During the Disclosure of a Dementia Diagnosis. Am J Alzheimers Dis Other Demen, 25, 513. 130 References & Resources

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