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)

4Alzheimer’s Association Facts and Figures 2014

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%)

6

Age Range Percent with Alzheimer’s

< 65 4%

65 -74 13%

75 -84 44%

85 + 38%

Alzheimer’s Association Facts and Figures 2014

• A population with complex care needs

• Indisputable correlation between chronic conditions and costs

Patients with Dementia

7

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

Alzheimer’s 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

8Boise et al., 2004; Boustani et al., 2003; Boustani et al., 2005; Silverstein & Maslow, 2006

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– Few dementia specialists available– May lack access to (or awareness of) community resources

9

Diagnostic Challenges

• For Providers– Time– Lack of definitive tests– Many patients unaware, do not report symptoms– Limited 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

Blendon et al., 2012; Holroyd et al., 2002; Turnbull et al., 2003

Alz-Eu Harvard

Turnbull Holroyd0

102030405060708090

100

%

Studies Agree:

Most people want to know.

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

“Beyond mountains, there are mountains.”

Haitian Proverb

Diagnostic Challenges

If we don’t diagnose, does itstill exist?

Rationale for Timely Detection

1. Patient Care / Outcomes2. Time3. Money

15

1. Improve quality of life– Patients can participate in decisions regarding their future care– Decrease burden on family and caregivers

2. Intervene to promote a safe and happy environment that supports independence

– RTC support/counseling intervention – Non-pharm intervention reduces NH placement by 30% and delays

placement for others by 18+ months

The message: You have a bad disease. We can help you make life better for you and your family.

Patient Outcomes

16Mittelman et al., 2006

3. Improved management of co-morbid conditions

– Underlying dementia = risk factor for poor compliance with ALL treatment goals (e.g., diabetes, hypertension, CHF, anticoagulation)

4. Reduce ineffective, expensive, crisis-driven use of healthcare resources

– Unnecessary hospitalization (dehydration/malnourishment, medication mismanagement, accidents and falls, wandering, etc.)

The message: We want to provide you with high quality care that is proactive and cost effective

Patient Outcomes

17

5. Treat reversible causes– NPH, TSH, B12, hypoglycemia, depression

The message: Maybe you don’t really have a bad disease after all!

Patient Outcomes

18

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

19Borson et al., 2007

Money

• AD most expensive condition in the nation– $203 billion in 2013, $1.2 trillion in 2050

• Cost effectiveness of early dx/tx?– 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

20Alzheimer’s Association Facts and Figures 2014; Long et al., 2014

Impact of Optimal Practices

16

• Reduces utilization through comorbidity managementTimely Detection

• Reduces behavioral symptoms• Delays institutionalization• Increases treatment plan compliance

Post-Diagnosis Education and Support

• Delays institutionalization• Reduces neuropsychiatric symptoms • Reduces costs

Effective Care Management

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

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

22

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

23

Introduction toACT on Alzheimer’s

25

ACT on Alzheimer’s

statewide

collaborative

volunteer driven

60+O R G A N I Z A T I O N S

300+I N D I V I D U A L S

I M P A C T S O F A L Z H E I M E R ’ S

BUDGETARY SOCIAL PERSONAL

26

Collaborative Goals/Common Agenda

Five shared goals with a Health Equity perspective

27

ACT Tool Kit

• Evidence and consensus-based, best practice standards for Alzheimer’s care

• Tools and resources for:– Primary care providers– Care coordinators– Community agencies– Patients and families

ACT Tools

28

29

ACT Tools

www.actonalz.org

Clinical Practice Tips

31

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

32

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 34Alzheimer’s Association, 2009

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

39

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.

40Long et al., 2014

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 Physician41

Clinical Provider Practice Tool

• Easy button workflow for:1. Screening2. Dementia work-up3. Treatment / care

www.actonalz.org/provider-practice-tools

42

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?

44

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

46

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)

Subject asked to recall 3 wordsLeader, Season, Table

Subject asked to draw clock, set hands to 10 past 11

+3

+2

Borson et al., 2000

49

50

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

53

http://youtu.be/CRQEighdb0w

Mini-Cog Scoring: Sam

Mini-Cog Scoring: Sam

Mini-Cog: Colleen

56

http://youtu.be/DeCFtuD41WY

Colleen’s Clock

Colleen’s Score

Mini-Cog Exercise

Form groups of 2• Administer MiniCog to each other• Score sample clocks

59

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

70

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

71

http://youtu.be/jyp0ShPiUH8?list=UUOPv8U5bHcdDCm4edmQDY9g

SLUMS Scoring: Colleen

• Interactive scoring exercise

72

SLUMS Scoring: Colleen

73

SLUMS Scoring: Colleen

74

SLUMS Scoring: Colleen

75

MoCA

Nasreddine et al., 2005

MoCA

Pass• > 26

Fail• 25 or less

77Nasreddine 2005

MoCA: Sam

78

http://youtu.be/ryf8SG0NQLQ?list=UUOPv8U5bHcdDCm4edmQDY9g

MoCA Scoring: Sam

• Interactive scoring exercise

79

MoCA Scoring: Sam

80

MoCA Scoring: Sam

81

MoCA Scoring: Sam

82

MoCA Scoring: Sam

83

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.pdf

Cognitive Screening Flow Chart

86

Cognitive ImpairmentIdentification Flow Chart

87

Dementia Work-upand Diagnosis

88

Dementia Work-Up

89

90

Dementia Work-Up

• H&P• Objective cognitive measurement• Diagnostics

– Labs– Imaging ?– More specific testing (e.g., neuropsychometric)?

• Diagnosis• Family meeting

Dementia Diagnoses

Alzheimer’s Dis-ease

Vascular Demen-

tia

Lewy Body

Demen-tia

FTD

Alzheimer’s 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

Delivering the Diagnosis

• General guidelines:– Family MUST be present whenever possible

• Encourage inclusiveness

– Talk directly to the person with dementia– Summarize test results in plain language

• Avoid complicated medical jargon• Try not to fill the time with words – less is more

93

Delivering the Diagnosis

• General guidelines:– Explain why tests were ordered and what results

mean• Review exam with family not present at initial

assessment

– Provide a specific diagnosis and prognosis

94

Delivering the Diagnosis

• General guidelines:– Ask more than once whether the patient / family

has any questions– Ask patient/family to repeat back what they have

heard• Make sure all family members hear the same message,

are on the same page

– Acknowledge how overwhelming the information feels; provide empathy, support, reassurance

95

Delivering the Diagnosis

• The message is tailored to each patient/family• Focus on wellness, healthy living, and

optimizing function– Sleep– Exercise– Social and mental stimulation– Nutrition and hydration– Stress reduction– Increase structure at home

96Zaleta & Carpenter 2010

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

97

Delivering the Diagnosis

• Address immediate problems:– Management of medications, finances, meals– Driving– Home safety– Caregiver burnout– Social isolation– Inactivity/lack of exercise

• Encourage family involvement/assignments– Family need to accompany patient to doctor appts.

98

Delivering the Diagnosis

• Recommend future actions– Create a ‘Plan B’

• What if primary caregiver is suddenly unavailable?

– Investigate home care, AL, LTC, other living options– Develop transportation options– Complete Advance Directives– Consider future medical care—how aggressive?

99Zaleta & Carpenter 2010

Common Questions

• How is Alzheimer’s different from dementia?• Is there any treatment? What can we do?• Does [latest news report] work? • How fast is this going to progress?• How often do we see you?• What’s next?

100

Delivering the Diagnosis: Sam

101

https://www.youtube.com/watch?v=vy2ZC5ZSZL8

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?

102

Dementia Careand Treatment

103

Care and Treatment

104

105

Care and Treatment

106

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

107

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

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

109

Screening

110

Labs and Orders

111

Consults and Referrals

112

Consults and Referrals

113

Pharmacological Treatment

114

Managing Mid toLate Stage Dementia

115

Managing Dementia Across the Continuum

116www.actonalz.org/provider-practice-tools

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 117

• 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 118

Adverse Outcomes

119

ACT to the Rescue!

120

Systematic Approach to Management

• Step 1: Define behavior• Step 2: Categorize target symptom• Step 3: Identify reversible causes• Step 4: Use non-drug interventions first

to treat target symptoms

121

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

122

Step 2: Categorize Target Symptom

• Psychosis– Delusions– Hallucinations

• Mood symptoms– Anxiety– Dysphoria– Irritability– Lability

• Aggression• Spontaneous disinhibition

123

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

124

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

behaviors126

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)127

• 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

Step 4: Non-pharmacologic Interventions

128Gitlin, et al., 2012

129

130

Pharmacological Treatment

• Antipsychotics• Antidepressants• Mood stabilizers• Cognitive enhancers

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 131

2005 FDA Box Warning

Elderly patients with dementia-related psychosis treated with

atypical antipsychotic drugs are at an increased risk of death

compared to placebo.

132

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/discontinue133

134

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)

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)135

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

136

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

137

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)

138www.nextstepsincare.org, United Hospital Fund, 2002

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.

139www.nextstepsincare.org, United Hospital Fund, 2002

Top 5 Resources forPatients and Families

140

#1 Promoting Wellness & Function

141

#2 Addressing Behavioral Challenges

142

#3 Caregiver Support

Alzheimer’s Association800.272.3900 | www.alz.org/mnnd

One stop shop for:– Care Consultation– Support Groups (Memory Club)– 24/7 Helpline

143

#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

144

#5 Medication Review

PharmD Consult

• Medication review, simplification• Reminder strategies• Family support, supervision

145

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). 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, MDAssociate Director: Patricia A. Schommer, MA

References & Resources• Alzheimer’s Association (2014). Alzheimer’s Disease Facts and Figures, Alzheimer’s & 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, & O‘mahony 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 Alzheimer’s disease on views about the disease across five countries. International Journal of Alzheimer’s 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): 811–817.

• 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). Alzheimer’s Disease International Global prevalence of dementia: A Delphi consensus study. Lancet, 366: 2112–2117.

147

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 & O’Mahony 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, 25:111–20. • 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, 391–396.• Lin JS, O’Connor 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.

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• 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, Bédirian 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 Alzheimer’s 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 Alzheimer’s 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.

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References & Resources

References & Resources• 2012 Updated AGS Beers Criteria:http

://www.americangeriatrics.org/files/documents/beers/2012BeersCriteria_JAGS.pdf • Alzheimer’s Association Family Questionnaire: http://www.alz.org/mnnd/documents/Family_Questionnaire.pdf • Alzheimer’s Association (2009). 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-Network-MLN/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-suggestions-Alzheimers/dp/0978902009

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