Transcript PowerPoint - ACT on Alzheimer`s

Best Practices to Simplify
and Optimize Dementia Care
for Health Care Providers
Rev 10-28-16
Objectives
• Understand the value of timely detection and employ
simple approaches to identify cognitive impairment
in routine practice
• Conduct a dementia work-up and communicate a
dementia diagnosis effectively to patients and
families
• Utilize best practices in medication and nonmedication interventions
• Help patients and family access services to improve
function and promote wellness
2
Where We Have Been
3
Where We Are Going
4
Alzheimer’s Disease:
Challenges and Opportunities
Alzheimer’s: A Public Health Crisis
• Scope of the problem
– 5.4M Americans with AD in 2016
– 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)
• Some populations at higher risk
– Older African Americans (2x as whites)
– Older Hispanics (1.5x as whites)
Alzheimer’s Association Facts
and Figures 2016
6
Base Rates
• 1 in 9 people 65+ (11%)
• 1 in 3 people 85+ (32%)
Ages of People with Alzheimer’s
Disease in the United States
Alzheimer’s Association Facts
and Figures 2016
7
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
Schubert, Boustani, et al., JAGS, 2006; Alzheimer’s
Association Facts & Figures Report 2014.
8
Challenges & Opportunities
• AD under-recognized by providers
– Fewer than 50% of patients receive formal diagnosis
• Millions unaware they have dementia
– Diagnosis often delayed on average 2-5 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
Balasa M, et al. 2011; Boise L, et al. 1999; Boise et al., 2004; Boustani et al., 2003; Boustani et al.,
2005; Holzer C, Warshaw G. 2000; Silverstein & Maslow, 2006
9
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
10
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
11
Myth:
People don’t want to know they have
Alzheimer’s disease
Studies
Agree:
100
90
80
70
60
% 50
Most people
want to
know.
40
30
20
10
0
Alz-Eu Harvard
Turnbull
Holroyd
Blendon et al., 2012; Holroyd et al., 2002; Turnbull et al., 2003
Diagnostic Awareness
Percent of Seniors Diagnosed with Condition Who Have Had
Their Diagnosis Shared With Them
93%
90%
83%
45%
Alzheimer's Disease
Four Most Common Cancers*
Cardiovascular Disease
High Blood Pressure
*Breast, Lung, Prostate, and Colorectal
Alzheimer’s Association Facts and Figures 2014;
Alzheimer’s Association HOPE for Alzheimer’s ACT Fact Sheet 13
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
17
Patient Outcomes
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.
Mittelman et al., 2006
18
Patient Outcomes
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
19
Patient Outcomes
5. Treat reversible causes
–
NPH, TSH, B12, hypoglycemia, depression
The message: Maybe you don’t really have a bad disease after
all!
20
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
21
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
22
Cognitive Impairment Predicts
Readmissions
Mini-Cog Performance Novel Marker of Post
Discharge Risk Among Patients Hospitalized for
Heart Failure (Patel, 2015; Cleveland Clinic)
• Method: 720 patients screened with MiniCog
during hospitalization for HF
• Results: 23% failed screen (M age 78, 49% men)
– MiniCog best predictor of readmission over 6 mos.
among 55 variables
• Stronger than length of stay, cause of HF, and even
comorbidity status
• Readmission rate 2 times higher among screen fails
• Fails discharged to facility (vs. home) had lower
readmission rates within first 30 days
23
Outcomes of Elective Surgery:
Preoperative Cognitive Impairment and
Mortality
Robinson et al, J Am Coll Surg, 2012.
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
26
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
27
Introduction to
ACT on Alzheimer’s
Focus on Quality Health Care
www.ACTonALZ.org
29
ACT Tool Kit
• Evidence and consensusbased, best practice
standards for Alzheimer’s
care
• Tools and resources for:
– Primary care providers
– Care coordinators
– Community agencies
– Patients and families
30
ACT Tools
31
ACT Tools
32
www.actonalz.org/provider-resources
Clinical Practice Tips
34
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
35
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
37
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.”
• 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
• September 11, 2001
– 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
Why Primary Care?
30000
10000000
27000
9000000
24000
8000000
21000
7000000
18000
6000000
15000
5000000
12000
4000000
9000
3000000
6000
2000000
3000
1000000
0
1992
1998
projected 2030
Persons with dementia
Specialists
US Geriatric Specialist Workforce v. Persons with Dementia
0
Year
Geriatric Medicine
Geriatric Psychiatry
Borson S, Chodosh J. Clin Geri Med 2014; 30: 395-420
Persons with dementia
42
Detecting Cognitive Impairment
43
Show of Hands
• How many routinely use an objective cognitive
assessment instrument as part of a memory
loss work-up?
– What happens after a patient ‘fails’?
• How many are doing Medicare Annual
Wellness Exams for patients?
44
Workflow
• Step 1: Trigger
– Annual exam (e.g., Medicare AWV)
– Signs and symptoms
– Patient / family report
• Step 2: Cognitive Assessment
• Step 3: Work-up
• Step 4: Referral
45
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
46
Show of Hands
• How long, on average, is the time lapse
between the first pathophysiological changes
in the brain and presentation of clinical
symptoms?
Answer:
a) 3-5 years
b) 5-10 years
c) 10-20 years
d) 20-30 years
47
Alzheimer’s is Insidious
Accumulation of neuropathology in the brain 10-20 years before symptoms appear
Fundamentals of Medicine
• Research on risk factors helps us identify
population at highest risk of disease
• Goal is to identify disease states before damage
to organ system is too great
• Objective measures are used to monitor patients’
health and detect disease whenever possible
– Brain should be no different
– Early symptoms of dementia are detectable using
simple, objective screening instruments
– Subjective impressions FAIL to detect cognitive
impairment in early stages
49
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
50
Clinical Provider Practice Tool
• Easy button workflow
for:
1. Identification
2. Dementia work-up
3. Treatment / care
www.actonalz.org/provi
der-practice-tools
51
Identifying Cognitive Impairment
• Initial considerations
– Timing
• Routine, annual check-ups or only when patients
become obviously symptomatic?
– Practice recommendation: Annual, objective cognitive
assessment at 65+
– Objective cognitive assessment 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
Identifying Cognitive Impairment
– Clinic flow
• Who will administer?
– Rooming nurses, social workers, allied health professionals,
MDs
• What happens when patients fail?
53
Objective Measures
• Wide range of options
–
–
–
–
–
Mini-Cog™ (MC)
Mini-Mental State Exam© (MMSE)
St. Louis University Mental Status Exam™ (SLUMS)
Montreal Cognitive Assessment™ (MoCA)
Rowland Universal Dementia Assessment (RUDAS)
• All but MMSE free, in public domain, and online
Borson et al., 2000; Folstein et al., 1975; Nasreddine 2005; Tariq et al., 2006
Administration Best Practices
• 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
Cognitive Impairment
Identification Flow Chart
56
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
www.actonalz.org/sites/default/
files/documents/Mini-Cog_.pdf
58
Mini-Cog
Pass
• >4
Fail
• 3 or less
NOTE: A cut point of <3 on the Mini-Cog has been validated for dementia screening, but many individuals
with clinically meaningful cognitive impairment will score higher. When greater sensitivity is desired, a cut
point of <4 is recommended as it may indicate a need for further evaluation of cognitive status.
Borson et al., 2000; Borson, Scanlan, Chen et al., 2003; Borson, Scanlan, Watanabe et al., 2006; Lessig, Scanlan et al., 2008; McCarten,
Anderson et al., 2011; McCarten, Anderson et al., 2012; Tsoi, Chan et al., 2015
Mini-Cog Improves Physician
Recognition
100
***
***
60
***
% Correct
80
Mini-Cog
Patient’s own
physician
40
20
*** p < .001
0
CDR Stage
0.5
MCI
1
Mild
Borson S et al. Int J Geriatr Psychiatry 2006; 21: 349
2
Mod
3
Sev
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 The Consultant Pharmacist 2008
Mini-Cog: Sam
http://www.actonalz.org/videos
62
Mini-Cog Scoring: Sam
Mini-Cog Scoring: Sam
Mini-Cog: Colleen
http://youtu.be/DeCFtuD41WY
65
Colleen’s Clock
Colleen’s Score
Mini-Cog Exercise
Form groups of 2
• Administer MiniCog to each other
• Score sample clocks
68
Clock #1
Clock #2
Clock #3
Clock #4
Clock #5
Clock #6
Clock #7
Clock #8
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.
78
SLUMS: Colleen
http://youtu.be/jyp0ShPiUH8?list=UUOPv8U5bHcdDCm4edmQDY9g
79
SLUMS Scoring: Colleen
• Interactive scoring exercise
80
SLUMS Scoring: Colleen
81
SLUMS Scoring: Colleen
82
SLUMS Scoring: Colleen
83
MoCA
Nasreddine et al., 2005
MoCA
Pass
• > 26
Fail
• 25 or less
Nasreddine 2005
85
MoCA: Sam
http://youtu.be/ryf8SG0NQLQ?list=UUOPv8U5bHcdDCm4edmQDY9g
86
MoCA Scoring: Sam
• Interactive scoring exercise
87
MoCA Scoring: Sam
88
MoCA Scoring: Sam
89
MoCA Scoring: Sam
90
MoCA Scoring: Sam
91
Objective Measure 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
Alternative Tools
• Virtually all 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
• More information
– Screening Diverse Populations on the ACT website
93
RUDAS
• Developed intentionally for
patients with:
• low levels of education
• limited language fluency
• diverse cultural histories
• Measures wide variety of
cognitive abilities
• Score range 0-30
• Track change over time
• Strong psychometric
properties
• 10-15 minutes to administer
94
95
96
Family Questionnaire
www.actonalz.org/pdf/FamilyQuestionnaire.pdf
Cognitive Impairment
Identification Flow Chart
98
Communicating Cognitive
Assessment Results
99
Scripting: Framing the Purpose
• Regardless of a passing or failing score, explain
the patient’s test result by first reminding them of
the assessment purpose
“The purpose of this task was to check on the
health of the brain and determine if there is
any need for further evaluation of your
thinking or memory.”
100
Scripting: Passing Score
• “You obtained a normal score on this
measure, which is good news. No additional
action is needed.”
• “However, if you have concerns about your
thinking or memory, talk to your provider.”
101
Scripting: Failing Score
• Nurse/Allied health professional:
– “Your doctor will review the results with you today
during your visit.”
102
Scripting: Failing Score
• Physician/Provider:
– “Your score on the measure was a little low today.
Have you been having any trouble with your
memory lately?”
– “I would like you to schedule a follow-up
appointment with me (or neurology, the memory
clinic, psychiatry, etc.) on your way out so we can
take a closer look at your memory. This is an
important part of your care and an important part
of staying healthy.”
– Enter order for follow-up/referral
103
Scripting: Failing Score
• “Today we did a brief exam to check on the
health of the brain. Your score on this
measure was a little low. This is like getting
blood work back that is outside the normal
range. We should follow-up on this. I am
going to send you to a specialist so we can
determine what this means and what we
should do about it.”
104
Dementia Work-up
and Diagnosis
105
106
107
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
Show of Hands
• How many of you deliberately use the words
Alzheimer’s disease with patients when
making a diagnosis vs. terms such as “memory
loss” or “dementia”?
110
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
– Provide a specific diagnosis
– Ask more than once whether the patient / family has
any questions
– Acknowledge how overwhelming the information
feels; provide empathy, support, reassurance
111
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 AK and Carpenter BD. Patient-Centered Communication During the Disclosure of a Dementia
Diagnosis. AM J ALZHEIMERS DIS OTHER DEMEN 2010, 25: 513
112
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
113
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.
114
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?
115
Follow-up Messages
• Recommend future actions
– Create a ‘Plan B’
• What if primary caregiver is suddenly unavailable?
– Develop medication management plan, consider
medication review (PharmD Consult)
– Patient/Family Disease Education / Planning
– Fall Risk Assessment
– Investigate home care, AL, LTC, other living options
– Develop hospitalization plan
– Complete Advance Directives
– Consider future medical care—how aggressive?
Zaleta & Carpenter 2010
116
Delivering the Diagnosis: Sam
https://www.youtube.com/watch?v=vy2ZC5ZSZL8
117
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?
118
Dementia Care
and Treatment
119
Care and Treatment
120
Care and Treatment
121
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
122
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
123
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
125
Screening
126
Labs and Orders
127
Consults and Referrals
128
Consults and Referrals
129
Pharmacological Treatment
130
Managing Mid to
Late Stage Dementia
131
Managing Dementia Across the
Continuum
www.actonalz.org/provider-practice-tools
132
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
experience mood or behavioral symptoms
during the course of their illness
Ferri et al., 2005; Jeste et al., 2008
133
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
134
135
ACT to the Rescue!
136
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
137
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
138
Step 2: Categorize Target
Symptom
• Psychosis
– Delusions
– Hallucinations
• Mood symptoms
–
–
–
–
Anxiety
Dysphoria
Irritability
Lability
• Aggression
• Spontaneous disinhibition
139
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
140
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
142
Step 4: Non-pharmacologic
Interventions
• 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)
143
Step 4: Non-pharmacologic
Interventions
• Teach family caregivers to:
– Validate  Join  Distract
– Understand that behavior = communication
– Ask themselves:
• Is this really a problem, and for whom?
• What is the feeling or underlying message this behavior is
trying to communicate?
• How can I address the underlying need?
• How long will this solution last?
144
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
– Establish routines
• Caregiver support
– Self care, minimize confrontation/arguing with loved one
– Identify support network
Gitlin, et al., 2012
145
http://actonalz.org/pdf/Table1.pdf
146
Pharmacological Treatment
•
•
•
•
Antipsychotics
Antidepressants
Mood stabilizers
Cognitive enhancers
147
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
148
2005 FDA Box Warning
Elderly patients with dementiarelated psychosis treated with
atypical antipsychotic drugs are
at an increased risk of death
compared to placebo.
149
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
150
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)
151
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)
152
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
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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
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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
155
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
156
Top 5 Resources for
Patients and Families
157
#1 Promoting Wellness &
Function
158
#2 Addressing Behavioral
Challenges
159
#3 Caregiver Support
Alzheimer’s Association
24/7 Helpline
800.272.3900 | www.alz.org/mnnd
One stop shop for:
– Care Consultation (social work intervention)
– Support Groups (Memory Club)
– 24/7 Helpline
160
#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
161
#5 Medication Review
PharmD Consult
• Medication review, simplification
• Reminder strategies
• Family support, supervision
162
ACKNOWLEDGEMENTS
This presentation was created by ACT on Alzheimer’s, an award-winning, nationally recognized,
volunteer-driven collaborative seeking to create supportive environments for everyone touched by
Alzheimer’s disease and to prepare Minnesota for its impacts.
ACT on Alzheimer’s®
Executive Co-Leads: Olivia Mastry, JD, MPH, Michelle Barclay, MA & Emily Farah-Miller, MS
Lead Presentation Authors: Terry Barclay, PhD and Michelle Barclay, MA
Special thanks to the ACT on Alzheimer’s Detection and Quality Health Care Leadership Group and
Medical Speaker’s Bureau Members
Visit www.actonalz.org/provider-practice-tools for
more information and to access supportive tools and
resources.
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, MD
Associate 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.
Balasa M, et al. Neurology. 2011;76:1720-1725.
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, et al. Am J Alzheimer's Dis. 1999:20-26.
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.
Borson, S., Scanlan, JM, Watanabe, J et al. (2006). Improving identification of cognitive impairment in primary care. Int J
Geriatr Psychiatry; 21: 349-355.
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.
165
References & Resources
•
•
•
•
•
•
•
•
•
•
•
•
•
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.
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.
Holzer C, Warshaw G. Arch Fam Med. 2000; 9:1066-1070.
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.
Lessig, M, Scanlan, J et al. (2008). Time that tells: Critical clock-drawing errors for dementia screening. Int Psychogeriatr;
20(3): 459-470.
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
166
University Caregiver Intervention In Minnesota. Health Affairs, 33(4), 596-604.
References & Resources
•
•
•
•
•
•
•
•
•
•
•
•
•
•
McCarten JR, Anderson, P et al. (2011). Screening for cognitive impairment in an elderly veteran population: Acceptability and results
using different versions of the MiniCog. J Am Geriatr Soc; 59: 213-309.
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.
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.
Patel, A., Parikh, R. et al. (2015). Mini-cog performance: A novel marker of post discharge risk among patients hospitalized for heart
failure. Heart Failure; 8(1): 8-16.
Robinson, T., Wu, D., Pointer, L., Dunn, C. & Moss, M. (2012). Preoperative cognitive dysfunction is related to adverse postoperative
outcomes in the elderly. Journal American College of Surgeons, 215:12-18.
Scanlan, J & Borson, S (2001). The Mini-Cog: Receiver operating characteristics with the expert and naïve raters. Int J Geriatr
Psychiatry; 16: 216-212.
Schubert, C.C., Boustani, M., Callahan, C.M., Perkins, A.J., Carney, C.P., Fox, C., Unverzaget, F. & Hendrie, H.C. (2006). Comorbidity
profile of dementia patients in primary care: are they sicker? Journal of the American Geriatric Society, 54:104-109.
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.
Tsoi, K, Chan, J et al. (2015). Cognitive tests to detect dementia: A systematic review and meta-analysis. JAMA Intern Med; E1-E9.
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.
167
References & Resources
•
•
2012 Updated AGS Beers Criteria:
http://www.americangeriatrics.org/files/documents/beers/2012BeersCriteria_JAGS.pdf
After a Diagnosis (ACT): http://www.actonalz.org/sites/default/files/documents/ACT-AfterDiagnosis.pdf
Alzheimer’s Association
•
Basics of Alzheimer’s Disease: https://www.alz.org/national/documents/brochure_basicsofalz_low.pdf
•
Caregiver Notebook - http://www.alz.org/care/alzheimers-dementia-caregiver-notebook.asp
•
Driving Center: www.alz.org/care/alzheimers-dementia-and-driving.asp
•
Facts & Figures video: http://youtu.be/waeuks1-3Z4
•
Facts & Figures Report: http://www.alz.org/documents_custom/2016-facts-and-figures.pdf
•
Family Questionnaire: http://www.alz.org/mnnd/documents/Family_Questionnaire.pdf
•
Know the 10 Signs. http://www.alz.org/national/documents/checklist_10signs.pdf
•
Living with Alzheimer’s – Mid Stage: https://www.alz.org/documents_custom/middle-stage-caregiver-tips.pdf
•
Living with Alzheimer’s – Late Stage: https://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.pdf
•
Taking Action Workbook: http://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.asp
•
HOPE for Alzheimer’s ACT Fact Sheet:
http://act.alz.org/site/DocServer/hope_for_alz_fact_sheet.pdf?docID=3021
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References & Resources
•
•
•
•
•
•
•
•
•
•
•
•
•
•
AD8 Dementia Screening Interview: http://knightadrc.wustl.edu/About_Us/PDFs/AD8form2005.pdf
At the Crossroads: http://www.thehartford.com/sites/thehartford/files/at-the-crossroads-2012.pdf
Caring for a Person with Alzheimer’s Disease:
http://www.nia.nih.gov/sites/default/files/caring_for_a_person_with_alzheimers_disease_0.pdf
Coach Broyles Playbook on Alzheimer’s: http://www.caregiversunited.com
Coping with Behavior Change in Dementia: A Caregier’s Guide: http://www.amazon.com/Coping-BehaviorChange-Dementia-Caregivers/dp/0692385444
Honoring Choices Minnesota:http://www.honoringchoices.org
Hospitalization Happens: http://www.nia.nih.gov/sites/default/files/hospitalization_happens_0.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
MN Health Care Home Care Coordination Tool Kit:
http://www.health.state.mn.us/healthreform/homes/collaborative/lcdocs/cliniccarecoordtoolkit.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
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References & Resources
•
•
•
St. Louis University Mental Status (SLUMS) examination
http://medschool.slu.edu/agingsuccessfully/pdfsurveys/slumsexam_05.pdf
The Alzheimer’s Action Plan:http://www.amazon.com/The-Alzheimers-Action-Plan-Know/dp/0312538715
Zarit Caregiver Burden Interview: http://www.uconnaging.uchc.edu/patientcare/memory/pdfs/zarit_burden_interview.pdf
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