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P R E S E N T S
T H E
27th Annual
Alzheimer’s Disease
Research
Symposium
STRATEGIES
FOR MANAGING
Dementia
Care
Featured Speakers:
Daniel D.
Christensen, MD,
is Clinical Professor
of Psychiatry,
Clinical Professor
of Neurology, and
Adjunct Professor of
Pharmacology at the
University of Utah
School of Medicine
in Salt Lake City.
William R. Shankle,
MS, MD, FACP, is a
neurologist specialized
in the management of
Alzheimer’s disease and
related disorders. He is the
director of Memory and
Cognitive Disorders, Hoag
Neurosciences Institute,
and the medical director of
Shankle Clinic in Newport
Beach, California.
David Troxel, MPH, has
become nationally and
internationally known
for his writing and
teaching in the fields of
Alzheimer’s disease and
long-term care. He has
co-authored four
influential books on
Alzheimer’s care as well
as staff development and
training.
Maryville College | 502 E. Lamar Alexander Pkwy | Maryville, TN 37804 | 1-800-597-2687
Alzheimer’s Tennessee, Inc. and the Quillen College of Medicine Office of Continuing Medical Education at East Tennessee State University Present The 27th Annual Alzheimer’s Disease Symposium June 20 & 21, 2013 The Clayton Center for the Arts at Maryville College, Maryville, TN ‐ near Knoxville Thursday, June 20 (Day One) “Focus on the Individual with Dementia” Agenda 7:00 AM – 8:00 AM Time 8:00 AM – 8:20 AM 8:20 AM ‐ 9:20 AM 9:20 AM – 9:40 AM 9:40 AM – 10:35 AM Registration and Continental Breakfast Topic Learning Objectives Welcome and Introductions Janice Wade‐Whitehead Executive Director Alzheimer’s Tennessee, Inc.  Identify Problems and Stresses in Caring for the Caregiver caregiving 
Aid caregivers in dealing with the Daniel D. Christensen, M.D. psychological aspects of caregiving Clinical Professor of Psychiatry Clinical Professor of Neurology Adjunct Professor of Pharmacology University of Utah Salt Lake City, Utah BREAK Care Transitions: Improving  Identify resources and tools to help transition Alzheimer’s patients from Care for Patients with one setting to another Alzheimer’s and Other  Improve patient care by implementing Chronic Conditions new knowledge about community‐
based Care Transitions opportunities Melissa Weeks, R.N. QI Specialist Qsource Memphis, TN 10:35 AM – 11:30 AM 11:30 AM – 12:25 PM Getting Through the Emotional Barriers to Help Families Viki Kind, M.A. Clinical Bioethicist KindEthics.com Granada Hills, CA Parting Thoughts: Palliative Care and Hospice for the Dementia Patient Gregory L. Phelps, M.D., M.P.H. Medical Director University of Tennessee Hospice Knoxville, TN 
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12:25 PM – 1:25 PM 1:25 PM – 2:25 PM Lunch Legal Issues Affecting Persons with Dementia Kelly G. Frere, C.E.L.A. Guyton & Frere, Attorneys Lenoir City, TN The Best Friends Approach to Alzheimer’s Activities David Troxel, M.P.H. Writer and Long‐term Care Consultant Sacramento, CA 
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Break Recognize the legal rights of persons with dementia Define ‘incapacity’ and identify who is responsible for making the determination Understand options for when legal documents do not work Understand options for when there is no responsible party available
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3:25 PM – 3:45 PM Understand the role of opioids in treating both pain and dyspnea in the hospice patient Understand how to dose long and short duration opioids and how to adjust the dosages Enumerate at least three steps in Goals of Care discussion and why these discussions are so important List at least three different ways a patient can experience nausea Understand the FAST Scoring system and its role in the timing and appropriateness of referral of a dementia patient to hospice 
2:25 PM – 3:25 PM Discover communication strategies to manage denial, anger and guilt Identify how to stay calm when in an emotionally charged interaction Discuss person‐centered approaches to help the family make better decisions for the person with dementia Describe the difference between structured and unstructured activities Name three ways to encourage persons with dementia to participate in activity programming Name three components of an outstanding, contemporary dementia activity program Describe how to get caregiving staff involved in activities
3:45 PM – 4:45 PM 4:45 PM – 4:55 PM Building a Culture of Care in Alzheimer’s Programs David Troxel, M.P.H. Writer and Long‐term Care Consultant Sacramento, CA Wrap up 
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Name three elements of culture change in long‐term care Describe three ways to effectively train and support staff Describe how a positive culture can reduce behavior challenges Describe how a positive work culture can support business success
Alzheimer’s Tennessee, Inc. and the Quillen College of Medicine Office of Continuing Medical Education at East Tennessee State University Present The 27th Annual Alzheimer’s Disease Symposium The Clayton Center for the Arts at Maryville College, Maryville, TN ‐ near Knoxville Friday, June 21 (Day Two) “Focus on the Science” Agenda 7:00 AM – 8:00 AM Time 8:00 AM – 8:10 AM Registration and Continental Breakfast Topic Learning Objectives Welcome and Introductions Janice Wade‐Whitehead Executive Director Alzheimer’s Tennessee, Inc. 8:10 AM – 9:10 AM The Amnestic Dutchman Daniel D. Christensen, M.D. Clinical Professor of Psychiatry Clinical Professor of Neurology Adjunct Professor of Pharmacology University of Utah Salt Lake City, Utah Vital Brain Aging: An Approach to Cognitive Health Care William R. Shankle, M.S., M.D., FACP Director of Memory and Cognitive Disorders Program, Hoag Neurosciences Institute; Medical Director, Shankle Clinic Newport Beach, CA Break 9:10 AM – 10:10 AM 10:10 AM – 10:20 AM 
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Recognize early signs and symptoms of Alzheimer’s Disease Appreciate the course of Alzheimer’s Disease from diagnosis to autopsy 
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Recognize risk factors for ADRD and the importance of managing these risk factors Recognize underlying medical conditions associated with memory loss and other types of cognitive impairment. Understand importance of early detection of memory loss Understand different types of treatment options for different types of ADRD 10:20 AM – 11:10 AM 11:10 AM – 11:55 AM 11:55 AM – 12:50 PM 12:50 PM – 1:40 PM 1:40 PM – 2:30 PM Differential Diagnosis in Dementia John H. Dougherty, Jr., M.D. Medical Director Cole Neuroscience Center, University of Tennessee Medical Center Knoxville, TN Falling Down: Falls and Gait Disorders in Older Adults Monica K. Crane, M.D. Clinical Assistant Professor of Medicine, Department of Medicine, University of Tennessee Medical Center‐
Knoxville, Associate Director, Senior Assessment Clinic Director of Research, Cole Neuroscience Center Knoxville, TN Lunch Lewy Body Dementia Challenges and Management
Karen A. Mullins, D.O. Physician Knoxville Neurology Clinic Knoxville, TN Frontotemporal Dementia Update: Diagnosis and Management Monica K. Crane, M.D. Clinical Assistant Professor of Medicine, Department of Medicine, University of Tennessee Medical Center‐
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Understand the differential diagnosis of the primary degenerative dementias Have a working knowledge of the secondary causes of dementia Understand the prevalence and clinical importance of falls Understand the risk factors for falls Know how to conduct an office gait assessment Become familiar with different gait disorders associated with falls Understand criteria for diagnosis of LBD Understand challenges of treatment of LBD Appropriately treat and manage LBD Understand the prevalence of FTD Understand key symptoms associated with behavioral variant FTD Review new genetic associations in FTD Discuss treatment options for FTD 2:30 PM – 2:45 PM 2:45 PM – 3:35 PM 3:35 PM – 4:20 PM Knoxville, Associate Director, Senior Assessment Clinic Director of Research, Cole Neuroscience Center Knoxville, TN Break  Parkinson’s Disease and Premotor Symptoms Michelle L. Brewer, M.D. Knoxville Neurology Clinic Knoxville, TN Speaker Panel John Dougherty, Jr., M.D., Medical Director, Cole Neuroscience Center, University of Tennessee Medical Center, Knoxville, TN Monica K Crane, M.D., Clinical Assistant Professor of Medicine, Department of Medicine, University of Tennessee Medical Center‐
Knoxville; Associate Director, Senior Assessment Clinic; Director of Research, Cole Neuroscience Center, Knoxville, TN Nancy Britcher, L.C.S.W., Knoxville, TN 
4:20 PM – 4:30 PM Open discussion Wrap Up and Evaluation 27th Annual Alzheimer’s Disease Symposium June 20‐21, 2013 The Clayton Center for the Arts at Maryville College, Maryville, TN Activity Director Target Audience Overall Conference Objectives Funding John H. Dougherty, Jr., M.D. Medical Director, Cole Neuroscience Center, University of Tennessee Medical Center‐
Knoxville, Knoxville, TN Target Audience: Family Medicine Physicians, Internal Medicine Physicians, Neurologists, Psychiatrists, Advanced Practice Nurses, Physician Assistants, Psychologists, Nurses, Nursing Home Administrators and Social Workers Learning Objectives: As a result of participating in this activity, the attendee should be able to…….  Describe the process of deterioration in the patient and the caregiver over the course of the disease  Describe the meaning and requirements of Patient Centered Care for Dementia Patients as defined by CMS  Describe the impact of exercise on patients with early, middle and late stage dementia  Describe the impact on the brain of listening and performing music and its role in preventing or postponing symptoms of dementia  Describe three problem solving strategies that can be used to deal with problem behaviors in dementia patients  Define and describe appropriate actions related to the legal issues experienced by dementia patients and their families  Cite the currently emerging research evidence in the diagnosis and treatment of dementia  Define steps in the differential diagnosis in Alzheimer’s type dementia including current strategies of management  Define and differentiate between cognitive testing and AV45 in dementia diagnosis  Describe the presentation, disease course and management of Lewy Body Type Dementia  Describe the premotor symptoms of Parkinson’s disease including how it facilitates diagnosis  Describe sleep disturbances in dementia patients, including management strategies The funding of this educational activity has been provided by the Ohio Valley Appalachia Regional Geriatric Education Center (OVAR). OVAR, a four university consortium, was established to provide education and training opportunities for health professionals and other personnel in order to enhance the availability and the quality of health care for older adults in the Appalachian Region. The OVAR/GEC is a national geriatric education initiative funded by the USDHHS, Health Resources and Services Administration, US Public Health Service, Bureau of Health Professions. Disclosure Information and Potential Conflicts of Interest Potential Conflicts of Interest East Tennessee State University’s Quillen College of Medicine, Office of Continuing Medical Education (OCME) holds the standard that its continuing medical education programs should be free of commercial bias and conflict of interest. It is the policy of the OCME that each presenter and planning committee member of any CME activity must disclose any significant financial interest/arrangement or affiliation with corporate organizations whose products or services are being discussed in a presentation. All commercial support of an educational activity must also be disclosed to the conference attendees. Speakers and Planning Committee Members with No Potential Conflict of Interest: Each of the following speakers and planning committee members have completed a disclosure form indicating that they or members of their immediate family do not have a financial interest/arrangement or affiliation that could be perceived as a real or apparent conflict of interest related to the content or supporters involved with this activity: • Alexander Osmand, Ph.D. (Planning Committee) None None  Linda Johnson (Planning Committee) • Viki Kind, M.A. (Speaker) None None  Karen A. Mullins, D.O. (Speaker) None  Gregory Phelps, M.D. (Speaker) • Janice Wade‐Whitehead (Planning Committee) None None  Pat Myrick (Conference Planner) None  Patty Warner, L.C.S.W. (Planning Committee) • Becky Dodson (Planning Committee) None None  Lisa Oglesby, Ph.D., M.S.C.P., C.B.S.M. (Planning Committee) • Lea Ann Patrizio, L.C.S.W. (Planning Committee) None • David Troxel, M.P.H. (Speaker) None • Missy Weeks, R.N. (Speaker) None • Nancy Britcher, L.C.S.W. (Speaker) None • Kelly Frere, C.E.L.A. (Speaker) None • Stanley Boling, R.N., B.S.N., M.S., C.N.A., C.H.E. (Planning Committee) None Speakers and Planning Committee Members with Potential Conflict of Interest: Each of the following speakers and planning committee members have completed a disclosure form indicating that they or members of their immediate family do have a financial interest/arrangement or affiliation that could be perceived as a real or apparent conflict of interest related to the content or supporters involved with this activity. All of their presentations have been peer reviewed and found to be balanced, evidence based, and free of commercial bias. Grant/Research Support: Cole  John H. Dougherty Jr., M.D. (Activity Neuroscience Center Director and Speaker) Other Remuneration: Novartis Consultant Fees/Salary: Clarity Point Alzheimer’s Treatments Center Advisory Board: Summitt Foundation Ownership/Partnership: Co‐Owner Interactive Education  Daniel D. Christensen, M.D. (Speaker) Other Remuneration: Eisai/Pfizer Other Remuneration: Pfizer, Forest,  Monica K. Crane, M.D. (Planning Novartis Committee and Speaker) Advisory Board: Alzheimer’s Tennessee Ownership/Partnership: Husband, Luke 
Accreditations: AAFP Prescribed Credits NAB Credit NASWTN CEUs Madigan, KOC Partner Grant Research/Support: UniHealth Foundation Other Remuneration: Forest Pharma Major Stock/Shareholder: Medical Care Corporation ACCME Accreditation: Quillen College of Medicine, East Tennessee State University, is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. William R. Shankle, M.S., M.D., F.A.C.P. (Speaker) CME Credit: Quillen College of Medicine, East Tennessee State University designates this live activity for a maximum of 14.00 AMA PRA Category 1 CreditsTM. Physicians should only claim credit commensurate with the extent of their participation in the activity. Joint Sponsorship: This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint sponsorship of the Quillen College of Medicine at East Tennessee State University and Alzheimer’s Tennessee, Inc. Quillen College of Medicine is accredited by the ACCME to provide continuing medical education for physicians. CNE CREDIT: 14.00 Continuing Nursing Education Contact Hours for this conference. East Tennessee State University College of Nursing is an approved provider of continuing nursing education by the Tennessee Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation. This event is presented by the Quillen College of Medicine Office of Continuing Medical Education, the College of Nursing Office of Continuing Education at East Tennessee State University, and Alzheimer’s Tennessee, Inc. This live activity, 27th Annual Alzheimer’s Disease Symposium, with a beginning date of 06/20/2013, has been reviewed and is acceptable for up to 14.00 Prescribed credit(s) by the American Academy of Family Physicians. Physicians should claim only the credit commensurate with the extent of their participation in the activity. The TN Department of Health Office of EMS recognizes this Symposium for fifteen (15) hours of continuing education contact hours for renewal. Application for NAB credit has been filed with the National Continuing Education Review Service (NCERS) of the National Association of Long Term Care Administrator Boards (NAB). Determination of credit is pending. This program was approved by the National Association of Social Workers – Tennessee Chapter (Provider Number: NASWTN 2013‐0076) for 14.00 continuing education units. Handouts Transcripts of CME Credit Conference Planner Handouts provided by presenters prior to the conference have been included in the syllabus. Please note that all presenters may not have given permission for their slides to be shared or may not have provided handouts prior to the conference and may instead bring with them for distribution at the time of their presentation. Available presentations are available for downloading and viewing at http://www.etsu.edu/cme CME Transcripts: Please note that CME certificates will NOT be issued for this conference. Your credits will be added to your TRANSCRIPT which is maintained in the ETSU Office of CME. You may print your transcript at any time through our website at http://www.etsu.edu/com/cme/transcripts.aspx. Please allow 3 weeks from the conference date before expecting to see your credits on your transcript. If you need a record of your credits sooner, please contact us at 423‐439‐8027. Pat Myrick Senior Educational Planner Quillen College of Medicine East Tennessee State University 423‐439‐8074
myrick@etsu.edu If you have questions, concerns, or comments about this activity, please contact: Barbara J. Sucher, M.B.A. Associate Dean for CME cmeadean@etsu.edu or 423‐439‐8081 The 27th Annual Alzheimer’s Disease Symposium June 20, 2013 (Day One) “Focus on the Individual with Dementia” 8:20 AM – 9:20 AM ‘Caring for the Caregiver’ Daniel D. Christensen, M.D. Clinical Professor of Psychiatry Clinical Professor of Neurology Adjunct Professor of Pharmacology University of Utah Salt Lake City, Utah  Identify problems and stresses in caregiving  Aid caregivers in dealing with the psychological aspects of caregiving Notes: 6/3/2013
Caring for the Caregiver:
A 20-year Video Case History
Daniel D. Christensen, M.D.
Clinical Professor of Psychiatry
Clinical Professor of Neurology
Adjunct Professor of Pharmacology
University of Utah
Alzheimer’s Disease
Number of patients
J Okla State Med Assn, 1994:87
Neurology Aug. 2003
Percent of adult Americans who fear:
38%
20%
13%
14%
9%
Diabetes
Stroke
Heart
Disease
Alzheimer’s Cancer
MetLife Foundation Survey, 2006
1
6/3/2013
Do you fear becoming
responsible for someone with AD ?
44%
36%
62%
13%
5%
Not at all
Somewhat
Very
Extremely
MetLife Foundation Survey, 2006
Alzheimer’s Disease
Projected Caregivers – 28 Million
Projected Patients – 14 Million
Alzheimer’s Disease
Caregivers (2005)
U.S. AD caregivers – 9,820,205
29% of all older caregivers (>60)
About ¼ provide > 40 hrs of care /week
32% sustain this level > 5 years
AD: Facts & Figures, 2007
2
6/3/2013
Who are AD Caregivers?
50%
40%
Spouse
Child
10%
Other
J AM Geriatric Soc 2006:54, 796-803
Who are AD Caregivers?
40%
50%
Spouse
75% Women
57% Work full or part-time
Child
10%
Other
Average age:
Caring for spouse - 69
Caring for parent - 52
Alzheimer’s Caregiving in the U.S., Alzheimer’s Association, 2004
Investigating caregivers attitudes and needs, Harris Interactive, 2006
Living arrangements of AD patients
64%
Caregiver
20%
LTC
10%
Supervisor
6%
Alone
CHS Alzheimer’s Disease Caregiver Project, Wave 6, 2004
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6/3/2013
Caregivers commonly (83%) express regret over
how long they waited to get medical help after
noticing the first cognitive chamges.
40% had waited a year or longer and some
as long as 5 years.
Why they waited:
45% Thought it was “normal aging”
25% Didn’t recognize the signs of AD
11% Didn’t know any treatment
existed for Alzheimer’s Disease
Caregiver Burden
A sum of the financial, physical and
emotional effects of providing care
for one with a disabling condition
Caregiver Burden - AD
Problems contributing most:
Wandering
Agitation
Violence / Aggression
Difficulty with basic ADL’s
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6/3/2013
Caregiver Burden
Effect on Caregiver’s Quality of Life*
With patients living at home significant negative effect on:
Recreation (Free time)
54%
Emotional health & mental well-being
47%
Social life
42%
Finances
39%
Overall quality of life
36%
Physical health
31%
%
2007 AD Caregiver Study VII, August 2007 GFK Market Measures, N=218
*Percentages = Top 2 box rating of a 7 point scale
Caregiver Burden
Important variables in the caregiver:
Coping strategies/abilities
Self esteem/Self-efficacy
Social support
Financial resources
Health status
Age & functional limitations
Past relationship with the patient
Caregiver Burden
55%
49%
40%
33%
Less time for Give up hobbies, Report high
levels
vacations or
family and
social activities of distress
friends
Less
exercise
5
6/3/2013
Changing Caregiver Demands
Mild
Independence Finances
Driving
Moderate
Decisions
Supervision
Clothing
IADL’s
Severe
Daily care
Basic ADL’s
The “Ideal” Caregiver
Good understanding of the diagnosis
Good understanding of the patient’s condition
Realistic expectations for outcome
Realistic expectations for care burdens
Regular visits & compliance with treatment
Provision for personal needs
Adaptive personality with optimistic outlook
Necessary resources for adequate treatment
Good working relationship with Dr. & staff
Caregiver Burden Scale
22 items
Rated 0 (never) to 4 (nearly always)
Scoring: Burden severity
0 – 20 Little
21 – 40 Mild
41 – 60 Moderate
61 – 88 Severe
Zant et al, Gerontologist 1980;20:649-655
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6/3/2013
AD Caregivers
Poorer self-rated health
Increased depressive symptoms (15 – 32%)
Increased anxiety symptoms (4 – 24%)
More use of psychotropic medications
Increased risk of death (60%)
Ann Intern Med 1994;120:126-132
J Am Geriatr Soc 1990;38:227-235
Am Fam Physician 2000;62:2613 – 2622
JAMA 1999;282:2215-2219
Caregiver Burden
“Most difficult is seeing him lose
his ability to function”
Significant numbers endorsed:
Caregiving is stressful and life changing
I worry about the costs
I don’t have as much time for myself
I exercise less
I have felt abandoned
Investigating caregivers attitudes and needs, Harris Interactive, 2006
Caregiver Burden
What would make your caregiving burden easier?
More day-to-day help
More financial support
More emotional support
More time for myself
More information / education
Investigating caregivers attitudes and needs, Harris Interactive, 2006
7
6/3/2013
Predictors of
Nursing Home Placement
Patient variables
Severity of cognitive impairment
Level of functional impairment
Behavioral problems
Caregiver variables
Caregiver burden
Risk factor for Early Placement
into Nursing Home Care
Not having a daughter
Elder Abuse
Physical, psychological, sexual, financial
Prevalence estimates (all elderly): 1 - 4%
(with dementia): 5 – 12%
Risk factors (patient):
Advanced age, frailty, impaired ADLs,
dementia, behavior problems
Risk factors (caregiver):
Substance abuse, psychopathology, high
caregiver burden, Family Hx of abuse
Coyne, Geriatric Times Vol 2 No 4, 2001
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6/3/2013
Caregiver time burden
Reduced caregiver time assisting with ADLs
Donepezil Study
52.4 minutes per day (p=.004)
Galantamine Study
32 minutes per day (p=.011)
Memantine Study
92 minutes per day (p=.01)
J Am Geriatr Soc 2003;51:737-744
Int J Geriatr Psychiatry 2003;18:942-950
Pharmacoeconomics 2003;21:327-340
Caregiver time burden
Change in caregiver time
Spent assisting with ADLs
(n=290, MMSE 5 – 17)
60 minutes
per day
40
Donepezil 5-10mg/day
Placebo
20
0
-20
-40
-60
0
4
12
Study Week
24
Coping Tips for Caregivers
Get educated about dementia
Get help for caregiving tasks
Protect personal time for things you enjoy
Make time for exercise
Eat well – regular / nutritious
Get sufficient sleep
Maintain a network of family and friends
Use available help such as respite care
and adult day care
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6/3/2013
Interventions for the Caregiver
Alzheimer’s Association
www.alz.org
1-800-272-3900
Links to:
American Association for Homes and Services for the Aging
Assisted Living Federation of America
Long Term Care Ombudsman
Medicare’s Nursing Home Compare
Interventions for the Caregiver
Optimal AD management should
always explicitly take into account
the welfare and well-being of the
caregiver
Too often forgotten
Are few validated studies
(Most have focused on Depression/Anxiety)
Interventions for the Caregiver
Patient interventions
“Cognitive medication”
“Behavioral medications”
Caregiver interventions
Education
Behavior management strategies
Communication skills
Support groups
Respite care Adult Daycare
Family therapy
Community resources
10
6/3/2013
Interventions for the Caregiver
Study of 206 caregiver/spouses of AD patients
randomized to two groups:
1. Six counseling sessions plus
a caregiver support group
2. No counseling or support group
Outcome:
Nursing Home placement in Group 1
was delayed by 329 days as compared
to Group 2 (p=0.02)
JAMA 1996;276:1725-1731
Interventions for the Caregiver
18 types of psychological interventions evaluated
for evidence of effectiveness:
Exercise, Validation therapy, Family counseling,
Environmental manipulation, Sensory stimulation,
Cognitive stimulation therapy, Behavioral management,
Music therapy, Reminiscence therapy, Therapeutic
Activity, Snoezelen Therapy, Montessori Activities
Teaching caregivers how to change their
interactions with the patient
Am J Psych 2005;162:1996-2021
E-Mental Health
The use of technology to improve mental health
Initially, most interventions used the telephone
Since:
DVD/Video – Video Respite
CD Interactive – Caregiver’s Friend
Web Site
– Link2Care
Alz On Line
Mastery Over Dementia
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6/3/2013
www.videorespite.com
Mastery Over Dementia
Web-based education / support for dementia caregivers
Large efficacy study is underway
Lessons:
1. Coping with behavior problems
2. Coping with care problems
3. Time for yourself
4. Thinking and feeling
5. Non-helping thoughts
6. Helping thoughts
7. Assertiveness
8. Communication and ongoing suport
National Alliance for Caregiving
Annual Meeting
July 20 – 23, 2008
Nashville Tennessee
12
6/3/2013
“Caregiver Gain”
Satisfaction
Personal growth
Life enhancement/enrichment
Personal meaning
Am J Geriatr Psychiatry 14:8 August 2006
Complicated Grief
1. A sense of disbelief regarding the death
2. Anger and bitterness over the death
3. Recurrent painful emotions with yearning
and longing for the deceased
4. Preoccupation with thoughts of the loved one,
including distressing intrusive thoughts
related to the death
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6/3/2013
Predictors of Complicated Grief
Study:
217 caregivers who experienced the death of their
family member
Results:
20% experienced “complicated grief ” (score of 30
or more on “Inventory of Complicated Grief ”)
Predictors of Complicated Grief:
High levels of preloss depression
High levels of preloss caregiver burden
Higher levels of patient cognitive impairment
More positive feelings about the caregiving experience
Suggested interventions (preloss):
Reduce caregiver burden & depression by:
Antidepressant medication / treatment
Caregiver support groups
Skills training
Education
About 50% of the complicated grief cases resolved
without specific interventions within 12 months
“When caregivers know that their relative is on a
trajectory toward death, they are better able to cope
with the death when it occurs.”
Am J Geriatr Psych 2006;14;8 650-658
14
9:40 AM – 10:35 AM ‘Care Transitions: Improving Care for Patients with Alzheimer’s and other Chronic Conditions’ Melissa Weeks, R.N. QI Specialist Qsource Memphis, TN  Identify resources and tools to help transition Alzheimer’s patients from one setting to another  Improve patient care by implementing new knowledge about community‐
based Care Transitions opportunities Notes: 6/3/2013
Care Transitions: Improving Care for Patients with
Alzheimer’s and Other Chronic Conditions
Qsource
June 20, 2013
Scope of the Readmissions
Problem
1 in 5 Medicare patients discharged from a hospital has a readmission within 30 days
3/4 are preventable = $12 billion in annual Medicare spending
2/3 Medicare (FFS) medical discharges are re‐hospitalized or dead within a year
1/2 Medicare (FFS) surgical discharges are re‐hospitalized or dead within a year
Readmissions Project Overview
Qsource undertook a project to describe geographic patterns of healthcare utilization focusing on readmissions within 6 Metropolitan Hospital Referral Regions (HRRs) across Tennessee
The overall purpose has been to engage community stakeholders in discussions around shared accountability for population health outcomes and healthcare expenditures
Qsource has also supported communities interested in federal and state funding by providing assistance in root cause analyses and interventional approaches
Those communities that are not funded but want to engage in continued work to improve transitions will have continued support with the statewide Learning & Action Network
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6/3/2013
Conceptual Foundation
Triple Aim concept
Improve health among all patients receiving hospital care
Improve care that is responsive to the needs of all patients in a hospital service area
Reduce expenditures for unnecessary readmissions
“Hot spotter” work of Dr. Jeffrey Brenner in Camden, NJ
Targeting resources toward the few individuals that account for a significant portion of readmission expenditures
Re‐conceptualizing the problem of readmissions based on work by Dr. Eric Coleman and others
Towards a comprehensive perspective that extends beyond the 4 walls of a hospital and is patient‐centered
Why Are People Readmitted?
Provider‐Patient interface
Unmanaged condition worsening
Use of suboptimal medication regimens
Return to an emergency department
Unreliable system support
Lack of standard and known processes
Unreliable information transfer
Unsupported patient activation during transfers
No Community Infrastructure for Achieving Common Goals
5
It’s Not a Hospital Project…
It’s a Community Project
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6/3/2013
National Demographics
CY 2009
Facts about Transitions of Care:
21% of hospitalized patients 65 or older are discharged to an LTC or other institution
Approximately 25% of Medicare SNF residents are readmitted to the hospital
Patients with chronic conditions (an expected 125 million in the U.S. by 2020) see up to 16 physicians in one year
41.9‐70% of Medicare patients admitted receive services from an average of 10 or more physicians with each admission
7
Tennessee HRR Demographics
CY 2009
Community Readmissions:
868,408 total Medicare beneficiaries (including those in other states contiguous to the HRR)
127,528 (15%) Medicare beneficiaries had at least one inpatient admission for which they were discharged alive
24,404 (19%) of these individuals experienced 1 or more readmissions for a total of 36,820 total readmissions
Readmissions accounted for $309 million in Medicare expenditures in one year for the five regions
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Demographics Summary
Each readmission represents a breakdown in care, a patient safety concern, and an opportunity to eliminate wasteful spending
Community rates of readmissions are a better indicator of healthcare delivery system functioning
Our goal is to help set a priority for the community to focus energy as a unit and break down silos
Opportunities to focus on system‐level changes while targeting scarce resources toward patients for whom the current delivery system works least well must be addressed
9
3
6/3/2013
2009 Rates of Readmission per 1,000
Medicare Patients
Across Tennessee Health Referral Regions
2009–2010 Change in Readmission Rates per
1,000 Medicare Patients in Tennessee HRRs
Per Capita Expenditures for Readmissions in
Tennessee HRRs
4
6/3/2013
Community Approach
6 communities statewide was original goal
As of June 2013, 9 communities organized, more communities showing interest
2 communities have received formal funding
Qsource continues to work with all interested communities on developing projects/plans to improve health of our residents and reduce hospital readmissions
A Regional View
West Tennessee
2 communities currently involved in project‐Jackson and Memphis
Multiple hospitals, SNFs, home health providers, and other community agencies collaborating on ongoing projects
ESRD network working diligently with this group
Very engaged group willing to remove silos and work across all disciplines to improve outcomes
Continuing to develop projects to improve transitions and healthcare quality in this region
A Regional View
Middle Tennessee
4 communities currently involved in project‐Columbia, East Nashville, Vanderbilt/NHC, Upper‐Cumberland
Vanderbilt/NHC community awarded Innovations Grant Multiple hospital systems and providers involved Strong partnerships formed with home health providers in this region
Communities working across rural and urban settings to improve care in this region
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6/3/2013
A Regional View
East Tennessee
3 communities currently involved in project‐Chattanooga, Knoxville, Tri‐Cities
Chattanooga awarded 3026 funding Diverse communities across region with strong AAA leadership for all communities
Multiple hospital systems collaborating in this region to improve care
All communities involved in multiple projects and forming committees to carry out plans developed for this region
Models for Action
Models for intervention in place statewide
Care Transitions Intervention
Project RED
Project BOOST
Bridge Model
STAAR
Transitional Care Model
INTERACT
Important Tools For Patients With A
Cognitive Decline
Personal Health Record (PHR)‐My Health Record: http://www.ntocc.org/Portals/0/PDF/Resources/Taking_Care_of_My_
Health_Care.pdfProject RED
Current and updated medication list at every interaction
Interaction with Identified Caregiver at each interaction and with any change to regimen
Tools for Family and Caregivers
http://www.thefamilycaregiver.org/caregiving_resources/
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6/3/2013
Community-Based Summary Points
Removing silos, breakdown of barriers between hospital systems and all providers of care vital to project
Community rate of readmission is a better indicator of healthcare delivery system functioning ‐ community involvement is key Our goal is to help set a priority for the community to focus energy as a unit and break down silos
Opportunity to focus on system‐level changes while targeting scarce resources toward patients for whom the current delivery system works least well Next Steps
Join a community in your region
If not already completed in your facility:
Patient interviews and outreach to identify root causes
Explore local provider knowledge of readmission breakdowns using the data that Qsource provides
Drill down on patterns associated with:
Admission source
Discharge destination
Primary diagnosis
Community Hot Spots
Development of a community plan and alignment with other initiatives
Combine community resources to effectively address care transitions
Care Transitions NCC
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6/3/2013
Safe Transitions Across Tennessee
www.Qsource.org/STAT
Safe Transitions Across Tennessee
Qsource analyzed geographic healthcare claims data and produced six regional readmission reports:
Memphis, Jackson, Nashville, Chattanooga, Knoxville and Tri‐Cities. We are now engaging community stakeholders to share innovative approaches for improving care coordination and identifying root causes of the variations found in the readmissions data.
Find a copy of our regional referral reports at:
http://www.qsource.org/readmission_reports_map
Safe Transitions Across Tennessee
www.Qsource.org/STAT
8
6/3/2013
Qsource would like to recognize the assistance of the University of Tennessee Health Science Center in developing the regional reports.
Missy Weeks, RN
Qsource QI Specialist/ East Tennessee Region
865.771.1772
mweeks@qsource.org
This presentation was prepared by Qsource, the Medicare Quality Improvement Organization (QIO) for Tennessee, under a contract with the Centers for Medicare & Medicaid Services (CMS), a federal agency of the U.S. Department of Health and Human Services (DHS). Contents do not necessarily reflect CMS policy. 12.ICPC.09.042
9
10:35 AM – 11:30 AM ‘Getting Through the Emotional Barriers to Help Families’ Viki Kind, M.A. Clinical Bioethicist KindEthics.com Granada Hills, CA  Discover communication strategies to manage denial, anger and guilt  Identify how to stay calm when in an emotionally charged interaction  Discuss person‐centered approaches to help the family make better decisions for the person with dementia Notes: B
LIFE
O
DEATH
T
H
BIRTH
C
S
Getting Through
the Emotional
Barriers to Help
Families
Viki Kind, MA
kindethics@gmail.com
www.KindEthics.com
www.TheCaregiversPath.com
(805) 807-4474
1
Viki Kind has no
financial conflicts of interest.
2
What Was Going Through Her Mind?
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Amygdala and Hippocampus both got activated (emotional
areas of brain). Amygdala remembers previous emotions.
Hippocampus remembers the details/context of the scene.
Amygdala scans everything that is coming in to look for
trouble. If it finds something, it fires off a surge of
adrenalin.
Because the amygdala works faster than our rational brain, it
sets off alarms before we can think about our actions
When this emotional reaction gets triggered, it takes less
than 90 seconds for the reaction to surge through our body
and then it is completely out of our blood stream.
The neocortex (rational area of the brain) gets to work right
after amygdala has fired off the initial reaction
Christine Wilding
3
1
Controlling Our Reactions
“Response – ability: The ability to choose to respond to
stimulation coming in through our sensory system at any moment in
time.”
Dr. Jill Taylor Bolte
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You have the power to choose your next reaction
Do you want to escalate and create another surge or do
you want to let the first strong reaction flow by?
We can’t control the first surge, but we can control what
happens next in our mind and body
We can’t control our first reaction but we can control our
outward response
4
Listening to Calm, then Problem Solve
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We can listen faster than we can talk.
 We listen at 500-600 words per minute
 We talk at 200 words per minute.
This leaves a lot of time for us to get distracted
We might practice “skip thinking” - thinking ahead to what
you are going to say next?
We might “tune out” while the person is explaining his or
her point of view?
We need to be fully present and patient with process
That is why we use minimal continuers or encouragers
 Uh huh, go on, tell me more, I see, right, etc.
5
Listening for the Non-Verbal Message
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What message are you hearing/seeing?
 7% of message is our words
 38% by vocal tone
 55% by non-verbal signals like body position, gestures,
etc.
What message are you sending?
Do you look like you are listening/“attending”?: Lean
forward, nod, open body position, move naturally, don’t
fidget, eye contact, demonstrate relaxed alertness
You will know it’s working if the
person is calming down
6
2
Compassion is the ability to
feel your pain in my heart
Unknown author
7
Acknowledge and Validate
Acknowledge and validate what you are hearing (even
though you might think the person is wrong for
believing this or acting this way)
Being heard is healing, comforting and calming
Say back what you have heard:”
 “That must have been so scary.”
 “You must have been so hurt, angry, … by that.”
 “That must have been very difficult.”
 “It must be so hard to feel criticized all the time.”
 “I can see how mad/sad you are about this.”
 “It really hurt your feelings when she did/said that.”
•
•
•
8
Normalize the Feelings/Perceptions

Test if you have heard/understood the person correctly:
 I have heard from many seniors that they are afraid of the what the
future holds. (You are opening up the door to explore a scary
topic.)
 Some of the seniors I work have tried is… What do you think
about this? (normalizing, educating and partnering to give control)
 For some of the families I work with, talking about these issues
brings up .… How is this discussion going for you? (validating,
exploring and normalizing that strong feelings may be coming up.)
 I often see how difficult this is for my clients/the families to …. Is
there anything I can do to make it better/easier for you?
(validating, normalizing, opening up space for discussion.)
9
3
Calming the Other Person Down
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Stop and check in with yourself
Use the person’s name and a calm, steady voice
Encourage: “I’d like to hear/understand what happened.”
Express your desire to solve the problem: “I want to find a
way to make this better for your dad.”
Provide a minor choice to short-circuit the person’s
emotional surge: “Would you like to talk here or go somewhere
else? Can I get you a glass of water?”
If person still in a high emotional state, offer an
alternative: “Maybe we can each take a moment to catch our
breath?”
Stay calm so you can keep listening. Don't try to educate
or talk rationally until person is calmer.
10
If Fear has Taken Over
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Listen to calm and understand the problem
Find out how he/she has problem-solved in past:
 “How do you usually know if you are making a good decision?”
(I think, I feel, I ask others, I pray, …)
 “What has worked for you in the past when you had to make a
decision?”
We can ask the person to “try on” the decision for a few
days and let us know what they think
 “Pretend you have made the decision and live with it for a few
days. See how you feel about it and if it is right for you. If you
realize it is the wrong decision, then try on a different answer.”
11
Why Are People Not Accepting
Our Help and Advice?
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Don’t agree with how you
define the problem
Don’t agree with the plan
Illiteracy and medical
illiteracy
Grief, denial, fear and
frustration
Pain and fatigue
Financial
Cultural/Religious values
Irresponsible
Mental illness
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Person does not have
decisional capacity
Substance abuse
Family roles and
interpersonal conflicts
We are asking them to make
decisions faster than they
are able
Anger at others because
angry with situation
Being controlling because
can’t control the situation
Poor communication 12
4
Understanding the Real Problem

Position vs. Interests
 Position is what the person says he/she wants
 Interest is what the person really wants

You won’t be able to solve the problem until you
understand the reasons and values beneath their position.
What is their real interest?
I want or don’t want _____ because __X__.
We need to discover what __X__ represents to them.
Then we will be able to find a solution which will meet
this underlying interest.
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13
Separate the Person from the Problem
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Stops the conflict from being one person against the
other
Creates a shared decision making partnership
Say, “How are you and I going to solve the _____ problem.”
The person stops being the problem and creates a third
person in the room called, “The Problem.”
This stops the arguing and frees up the two people to
work together to brainstorm possible solutions
14
5-Step Process to Help the Person/Family
Get Out of Denial
At any point in the conversation, you may need to stop and
allow the person to process what you have said. You may
need to come back later to finish the 5-steps, if the person
is willing.

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Step 1: Normalize:
“So many of the families/patients I work with struggle to take in all
the information that is coming their way. It can be really
overwhelming.”
Step 2: Introduce denial gently:
“Especially when it is bad news. Everyone wishes that what the
doctor is saying isn’t true.”
15
5
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Step 3: Introduce the idea of denial being both good and
bad:
“This wishing it wasn’t true can be both good and bad. In the short
term, denial can protect the person from the pain of hearing the bad
news. (It keeps the person’s brain from exploding.)”
“But in the long term, denial can be really bad because it can keep the
person from...”
 Seeing the changes in the person
 Asking for help from family, friends, faith community and
professionals
 Getting proper medical care
 Helping the person have a meaningful, profound and dignified dying
experience
16
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Step 4: If the person hasn’t shut down and is still listening,
you can try option A or B
Option A: “I wonder if you would be willing to talk about ___ for
15 minutes. Then you can not think about ___ for the rest of the
day.”
Option B: Introduce the concept of disbelief by asking an
“if” question:
 “If ___ were going to die, would he want to go home or stay here in
the hospital?”
 Alternate: “Does it ever cross your mind that ___?”
Step 5: To move into decision making: Ask a second “if”
question but be careful because coming out of denial is
painful and the person will be emotionally fragile: “If ___
were to help him go home, would you like some information about this
now or later today when your family can be here with you?”
17
I Don’t Want to Have to Take Over!
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Appropriate guilt vs. Inappropriate guilt
Ask, “Did you actually do something wrong?”
If answer is yes: “Then own up, say you are sorry and make it
right. If the person is no longer with us, then just make sure you don’t
make the same mistake in the future.”
If answer is no, “I just feel badly,” say, “If you didn’t do
anything wrong, then guilt is the wrong word. The reason people call
it guilt is because we don’t have another word in English to describe
the feeling. It probably feels like guilt in your gut, but what you might
be feeling is really a combination of regret mixed in with wishful
thinking. Since you didn’t do anything wrong, you can stop feeling
guilty. That doesn’t mean you won’t stop wishing it were different.”
18
6
Substituted Judgment Keeps the Focus
on the Patient/Client/Resident
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Foundation of Person-Centered Care:
The decision maker is supposed to step into the patient’s
life and speak with the patient’s voice—not his or her
own voice
“What would the person be telling us if he or she were able to speak
right now?”
“Did she ever imagine how sick she could get? If she could see what
has happened and how things have changed, would she understand and
forgive you for the choices you have to make?”
19
Tools and Resources
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The Cards You’ve Been Dealt – Need’s Assessment cards to
help the patient and/or family review the patient’s abilities and
needs www.thecardsyoubebeendealt.com
Go Wish Cards www.gowish.org (English and Spanish)
Questions to Ask When Making Medical Decisions and the
Insider’s Guide to Filling Out Your Advance Directive
www.TheCaregiversPath.com on resource page
Consider the Conversation – documentary about making end-oflife decisions www.considertheconversation.org
Virtual Dementia Kit by www.secondwind.org
Well Spouse Association: www.wellspouse.org
Kindness Reminders: Free weekly ideas to help you to show love
and support to a loved one. (Especially helpful for those doing
long distance caregiving.) Go to www.KindEthics.com and sign up
in the box in the upper right hand corner.
20
Book Resources

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How to Say it to Seniors – Closing the communication gap
with our elders by David Solie, MS, PA
Caregiver Mind Maps: New Tools For Eldercare by David Solie,
MS, PA
My Stroke of Insight: A Brain Scientist's Personal Journey by
Dr. Jill Bolte Taylor
They’re My Parents Too by Francine Russo
Emotional Intelligence by Christine Wilding
The Lost Art of Listening – How learning to listen can improve
relationships by Michael P. Nichols Ph.D
Getting to Yes: Negotiating Agreement Without Giving In by Roger
Fisher and William Ury
Transitioning Your Aging Parent – A 5 step guide through
crisis and change by Dale Carter
The Caregiver’s Path to Compassionate Decision Making:
Making Choices for Those Who Can’t by Viki Kind
21
7
11:30 AM – 12:25 PM ‘Parting Thoughts: Palliative Care and Hospice for the Dementia Patient’ Gregory L. Phelps, M.D., M.P.H. Medical Director University of Tennessee Hospice Knoxville, TN  Understand the role of opioids in treating both pain and dyspnea in the hospice patient  Understand how to dose long and short duration opioids and how to adjust the dosages  Enumerate at least three steps in Goals of Care discussion and why these discussions are so important  List at least three different ways a patient can experience nausea  Understand the FAST Scoring system and its role in the timing and appropriateness of referral of a dementia patient to hospice Notes: 6/5/2013
Palliative and Hospice Care for the Dementia Patient.
27th Annual Alzheimer's’
Research Symposium June 20th, 2013
Greg Phelps MD Alzheimer’s is a Fatal Disease
• 6th most common hospice diagnosis
• 6th leading cause of death • Life expectancy between 2‐20 years with median survival 4.2 years men, 5.7 years women
• Last three months of life 40.7 % underwent at least one burdensome intervention (Hospitalization, PEG tube, ER visit)
• Patient’s most commonly die of infection from aspiration, UTI or infection from decubitus.
•
1
6/5/2013
There is Never, Ever
“Nothing Else We Can Do…Ever!”
Cure Sometimes, Treat often, Comfort Always
Hippocrates
What is the purpose of Medicine?
• Optimize health?
• Cure Disease
• Minimize disease burden • Maximize lifespan?
• Control symptoms
• Relieve pain
• Improve/ optimize function?
Two Things We Don’t Talk About!!‐ Death and Money!
Actually We are About Living Life Fully!
2
6/5/2013
“It is the Closure Fairy!”
To Be Comfortable in Discussing our Patient’s Mortality We Must be Cognizant of our Own • Love is Stronger Than Death: Peter Kreeft
1972 •
•
•
•
•
Death as an Enemy
Death as a Stranger
Death as a Friend
Death as Mother
Death as a Lover
• Mortality: Christopher Hitchens 2012
• Final Gifts Understanding the Special Awareness, Needs and Communication of the Dying. Maggie Callahan Patricia Kelly 1992
What Most Doctor’s Think of Hospice/Palliative Care
• I knew that, in order for a patient of mine to be eligible, I had to write a note certifying that he or she had a life expectancy of less than six months. And I knew few patients who had chosen it, except maybe in their very last few days, because they had to sign a form indicating that they understood their disease was incurable and that they were giving up on medical care to stop it. The picture I had of hospice was of a morphine drip
•
Atul Gawande: Letting Go, What Should Medicine Do when It Can’t Save Your Life, The New Yorker. Aug 2, 2010
3
6/5/2013
Palliative Care Defined
• Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis.
• The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
Everyone is entitled to SOME Palliative Care
Eight Domains in Palliative Care
–Physical
–Psychological
or psychiatric
–Social
–Spiritual
–Cultural
–Ethical
–Care of the
imminently
dying
–Process of
care
4
6/5/2013
What is the Difference Between Hospice and Palliative Care
Hospice is an insurance benefit‐
Palliative Care is a treatment philosophy
Palliative Care: Can be engaged
in life threatening illness much earlier in acute care when curative treatment still on‐going. Palliative Care
Hospice
Hospice‐A 1982 Medicare benefit . For last six months
of life. Usually home or residential based. Used when curative care no
longer pursued
The Economist‐May 25th, 2013
• As people live longer…for all the hot air about “Death Panels”, the cost effectiveness of a health‐care system matters. • More than perhaps any government in the world, America’s pays doctors to do stuff rather than keep people well. • That has to change.” Follow the Money!!
Democrats Propose (Best Case Scenario)
• US Healthcare is over 18% of GDP (more the twice the next first world country) 2.8 Trillion Dollars this year!! Projected to grow to 21% by 2023 5% of Medicare beneficiaries die annually.
27.4% of ALL Medicare outlay is in final year of life
The Obama’s budget proposal would require $57 billion in higher payments by Medicare beneficiaries, cut $306 billion in projected Medicare payments to health care providers and squeeze $19 billion out of Medicaid, the program for low‐income people. • 10,000 Baby Boomers hit 65 EVERY DAY • Percent of population over 65 to grow from 12% to 20% by 2030
• Single fastest growing segment of population is the “old elderly” ‐‐ 85+ •
•
•
•
•
• New York Times April 10th, 2013 5
6/5/2013
Citing possible 8.3 million dollar savings, Gov. Bobby Jindal of Louisiana drops hospice for Medicaid Patients (Dec 2012)
Headline: ‘Jindal
to Poor:
“Drop Dead”’
January‐ Jidal rescinds order
Why?
• It was pointed out that many of those people dying at home in hospice would soon be dying in much more expensive hospitals
• Savings to Medicare by hospice and LOS to death:
• 1‐7 days……… $2,651.00
• 8‐14 days……. $5040.00
• 15‐30 days. $6,430.00
Health Affairs, 3/6/2013
Hospitals Can be Dangerous to the Elderly (and others)
“
Here‐‐‐Fill out this tag and attach it to your toe.”
A Scenario
• Ms B in nursing home with moderately advanced Alzeimer’s and CHF and DJD develops low grade cough and temp of 100.4.
• Night nurse calls on call physician who is unfamiliar with patient. He tells nurse to send patient to hospital
• Hospital ER sees small patch of possible atelectasis normal white count and chemistries. Has hospitalist admit patient for IV antibiotics
• 2nd night there patient climbs over bed rails breaks hip hospital stay now prolonged for hip replacement and rehab before return to SNF • Outlander JG, Berenson RA: Reducing Unnecessary Hospitalizations in Nursing Home Residents. NEJM 365 (13) 1165‐67
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6/5/2013
Geriatric Frailty
“ A Physiologic syndrome characterized by decreased reserve and diminished resistance to stressors resulting from cumulative decline across multiple physiologic systems causing vulnerability to adverse outcomes “ American Geriatric Society Three of Five:
Secondary Criteria:
• Loss of Muscle strength
• Unintended weight loss
• Increased sleep or low activity level • Poor endurance easy fatigue
• Unsteady gait or slowed performance •
•
•
•
Decreased cognition
Decreased balance
Deficient social support
Poor motor processing Poor health (self reported) • Frailty in general associated with 300‐500 increased risk of mortality
Mechanisms of Geriatric Frailty
• Sarcopenia: after age 40 8‐12% muscle loss per decade most replaced with fat. After 75 process accelerates • Neuro‐endocrine dysfunction: low testosterone, estrogen, insulin growth factor, DHEA, cortisol, growth hormone. • Chronic Low Grade inflammation: adipose tissues secrete pro‐inflammatory cytokines like IL‐6 etc. Curative/Functional/Palliative
Curative
Functional
Palliative
Goal: Cure Disease
Goal: Maintain/improve
function
Goal: Comfort care
Object of Treatment is disease
Object of treatment is disease while not impacting function of patient
Object of treatment is Patient and Family
Primary value is measurable data‐ labs X‐rays test (tends to devalue subjective immeasurable data) Primary value is assessment Primary Value is patient of function to determine
experience of suffering and appropriate level of treatment symptoms Patient’s body differentiated
from mind and often divided into treatable body parts by specialty Patient’s function as both body and mind must be protected Patient is viewed as complex being with emotional, physical social and spiritual components
Therapy is indicated to cure disease or slow progression.
Therapy is scaled to what patient can tolerate without likelihood of additional functional loss (Avoid “one point restraints) Therapy is indicated for relief of symptoms or suffering and congruent with patients Values and beliefs Death is the Ultimate
Failure Helping patient hold off loss of function until the very end is a success. Enabling Patient to live fully and comfortably until he or she dies is a success
7
6/5/2013
Hospital Associated Disability
JAMA Oct 26th, 2011 Covinsky KE, Pierluissi E., Johnston CB • Loss of ADLs during acute hospitalization.
• Occurs in 1/3 hospitalized patients > 70 • > 50% of patients > 85 leave hospital with new disability
• 1/3 of hospitalized elderly have delirium (more commonly hypoactive delirium)
• 41% of elderly who developed HAD DIED! In under one year, another 29% still disabled at one year
Steps to Avoid HAD • Avoid the “One Point Restraints” when possible: Urinary catheters, IVs, O2 catheters, NG tubes • Better recognition of functional status
• Exercise/ walk patients if at all able. • Ensure patient is eating properly • Avoid sedative hypnotics and anti‐histamines • Recognize and palliate pain and symptoms CAPC Survey of Attitudes
For Patients with Serious Illness
800 patient’s surveyed
Released June 28th 2011
Available at CAPC.org
• Biggest concerns: Cost, Control, Communication, Choice, Cure? Physicians not providing all treatment options‐ 55%
Doctors not sharing information with each other‐55%
Doctors not choosing best option for seriously ill‐ 54%
Patient and family leave physician office not knowing what they are supposed to do when they get home‐51%
– Patient lacks control over treatment options‐ 51%
– Doctor doesn’t spend enough time talking and listening with patient and family 50% –
–
–
–
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6/5/2013
California Healthcare Foundation Survey 2012
70% ‐90% of patient’s say they would prefer to die at home (about 30% do) 66% say they would prefer to die a natural peaceful death. Only 7% desire all invasive therapeutic options deployed. Palliative Care When?:Triggers • The ‘‘surprise question’’: You would not be surprised if the patient died within 12 months or before adulthood
• Frequent admissions: e.g., more than one admission for same condition within several months, or coming from SNF • Complex care requirements: e.g., functional dependency; complex home support for ventilator/antibiotics/feedings/home O2
• Decline in function, feeding intolerance, or unintended decline in weight (e.g., failure to thrive)
• Move to, or from ICU
• Initiation of dialysis or ventilation
• PEG tube contemplated
• Pain or symptom control • Goals of Care/advance directives/Code status So What Happens to the Elderly (Survey 4158 Seniors) Non‐Hospice Patients
• Elderly patients avg. age 83
• 75% visit ER in final 6 months (40% more than once)
• >50% visit ER final month
• Of those in ER, 75% admitted
• 39% admitted to ICU
• 68% admitted died in hospital
Hospice patients
• Hospice Patients
• Less than 10% seen in ER
• Vast majority die at home
•
Smith AK, McCarthy E, Weber E et al; Half Of Older Americans Seen In Emergency Department In Last Month Of Life; Most Admitted To Hospital, And Many Die There. Health Affairs. June 2012 31:61277‐1285
•
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6/5/2013
End of Life Discussions
Subjects terminal cancer patient 4.4 month life expectancy • 123 of 332 (37%) patients with terminal illness had end of life discussions
• “Have you and your doctor discussed any particular wishes you have about the care you would receive if you were dying?”
• These patients elected less aggressive care with fewer ICU admits 4.1% vs
12.4%, fewer ventilation episodes 1.6 vs 11%,
• More aggressive care was associated with poorer quality of life for the patient and higher risk of major depressive disorder for bereaved care givers. (PTSD)
• Study showed that patients did not have increased depression or loss of hope. AA Wright, B Zhang A.Ray et al, Associations Between End of Life Discussions Patient Mental Health, Medical Care Near Death
And Caregiver Bereavement Adjustment. JAMA 1665‐1673. Oct 8, 2008
Advance Care Planning
Not So much about Death as
It’s About How You Want to Live
•
•
•
•
•
•
•
What are your goals
How do you want to live
Paint me a picture of how you see your life
What is important to you
What do you want for your family
How do you want to be remembered
“Begin with the end in Mind.” Stephen Covey
“Hope for the Best/Plan for the Worst “
The Goals of Care Discussion
• Pre‐planning and semiotics
• Introductions • Purpose
• Tell me about the patient
• What do you understand about the diagnosis??
• WARNING SHOT (I wish statements)
• Explain diagnosis
• Await reaction • Validate emotions
• Keep the focus on the patient • Did you (r)… ever talk/advance directives • What would they want (substituted judgment)
• CPR/AND/ DNAR • Summarize and record.
Success of a GOC is based on how much family and patient talk!
10
6/5/2013
Mortality PPS Score
Six Month Mortality %
Survival in Days average
• PPS Score 10‐20%....96%
• PPS Scare 30‐40%....89%
• PPS Score 40‐50%...80%
•
•
•
•
•
•
Median 1 Median 2
PPS 10%.... 1.88 6 PPS 20% ….2.62 6 PPS 30% ….6.7 41
40% ………..10.3 41
50%........... 13.9 41
We Was Robbed!
Hospice Diagnoses Removed as of 4/30/2013
• CMS demanding more precision in coding and diagnosis. (Actually a proposal for comment but most hospices freaked out!) • Debility
• Adult Failure to Thrive
• Senile dementia, pre‐senile dementia, vascular dementia
• Must be Alzheimer’s, CVA with dementia, Creutzfeldt‐Jakob, etc.
11
6/5/2013
FAST Criteria For Dementia
Functional Assessment Staging
•
FAST (Functional Assessment Staging) Scale Items: Stage #1: No difficulty, either subjectively or objectively
Stage #2: Complains of forgetting location of objects; subjective work difficulties
Stage #3: Decreased job functioning evident to coworkers; difficulty in traveling to new locations
Stage #4: Decreased ability to perform complex tasks (e.g., planning dinner for guests; handling finances)
Stage #5: Requires assistance in choosing proper clothing
Dementia is hospice qualified @ 7A if associcated
With aspiration, or Upper UTI, sepsis, weight loss Of 10% in six months‐Stage III‐IV decubiti etc.
NHPCO Guidelines.
•
FAST (Functional Assessment Staging) Scale Items: Stage #6: Decreased ability to dress, bathe, and toilet independently:
∙ Sub‐stage 6a: Difficulty putting clothing on properly
∙ Sub‐stage 6b: Unable to bath properly; may develop fear of bathing
∙ Sub‐stage 6c: Inability to handle mechanics of toileting (i.e., forgets to flush, does not wipe properly)
∙ Sub‐stage 6d: Urinary incontinence
∙ Sub‐stage 6e: Fecal incontinence
Stage #7: Loss of speech, locomotion, and consciousness: ∙ Sub‐stage 7a: Ability to speak limited (1 to 5 words a day)
∙ Sub‐stage 7b: All intelligible vocabulary lost
∙ Sub‐stage 7c: Non‐ambulatory
∙ Sub‐stage 7d: Unable to sit up independently
∙ Sub‐stage 7e: Unable to smile
It is Every Doctor’s Responsibility to Effectively Relieve Pain! Symptoms‐Pain and More
Total Suffering of end of life patients
•
•
•
•
•
•
•
•
•
. 40‐70 % suffer unnecessary pain Fatigue 70‐95% Shortness of Air: 21‐78% Delirium 28‐83%
Constipation/Bowel Obstruction 5‐28%
Nausea/ vomiting 15‐40% Dry mouth/mouth sores
Depression
Spiritual angst 12
6/5/2013
For seniors, It is a GOOD Day when nothing New hurts!
Common Sources of Geriatric Pain
• Musculoskeletal: arthritis, spine disorders
• Nighttime leg pain, RLS, PVD muscle cramps
• Cancer: 80% of cancer patients have pain and chemotherapy can cause neuropathic pain. • Neuropathic pain such as diabetic neuropathy or Shingles (PHN) Challenges to Treating Geriatric Pain
Possible Cognitive Impairment
Fear of Addiction
Stoicism/ under‐reporting Increased risk of ADR (3% risk general population 10% risk geriatric population)
• Challenges of poly‐pharmacy •
•
•
•
13
6/5/2013
American Geriatric Society Chronic Pain Guidelines
First promulgated 1999
Revised 2002 Most recent revision April 21, 2009 Two substantial changes:
NSAIDS and Cox‐2 be used “rarely” and “with extreme caution” due to risky side effect profile that includes worsening hypertension, edema, heart failure renal failure and GI bleeds. • Also recommends “all patients with moderate to severe pain, pain related to functional impairment or diminished quality of life due to pain should be considered for opioid therapy
•
•
•
•
•
Opioid Analgesics and the Risk of Fractures in Older Adults with Arthritis. Matthew Miller MD, MPH, ScD, Til Stürmer MD, MPH, Deborah Azrael PhD, et al. J. of American Geriatrics Society. Vol. 59 (3) pp 430‐8 March 2011
• Compared falls risk in between 12,436 opioid initiators and 4,874 NSAID initiators. Opioid patients had increased risk of falls that lasted two weeks after initiation 120 fractures /1000 person years vs 25 fractures/1000 person years for NSAIDs Problems with the Study
• 45% of patients were started on Darvocet which is sufficiently toxic (seizures cardio‐toxicity) to be taken off US markets
• Opioids were given to opioid Naïve patients in doses up to 225 mg codeine (37 mg morphine equivalent) • Opioid initiators more likely to be on benzos, PPI, steroids and more likely to have already fallen in the last year. • Source: Geripal blog‐ April 12, 2011
14
6/5/2013
The Gold Standard and Conversions
Oral Morphine Equivalents (OME)
Morphine
Hydromorphone
Oral Med
30 mg
7.5
IV/Sub Q Med
10 mg
1.5
Hydrocodone </= oral morphine </= oxycodone
Oral morphine daily dose is double fentanyl patch dose
IE: 50 mcg/h patch equals 100 mg daily oral morphine.
Oxymorphone is slightly more that twice the potency of morphine So 40 mg Opana = about 100 mg oral morphine Codeine is 1/6th as potent as morphine, i.e. 30 mg of
Codeine = 5 mg of morphine
Demerol 100 mg IV = 10 mg Morphine IV ALWAYS REDUCE DOSE IN CONVERSION 25‐50% FOR INCOMPLETE CROSS TOLERANCE
Scientists have identified 9 different forms of mu opioid receptors All conversion tables are, at best, rough equivalencies Timing Pain Meds
• Onset to peak : IV 10‐15 minutes, Sub Q 30 minutes, PO one hour‐short acting 3‐4 hours long acting. Fentanyl patches up to 12 hours. • Duration three to four hours for most short acting medications. (a little less for demerol, fentanyl)
• So meds should be should be scheduled accordingly‐‐‐ regularly and routinely
• If an IV med hasn’t worked in 15 minutes, it won’t. If a PO short acting med hasn’t worked in an hour, waiting four hours just ensures an effective dose is never reached. Pain Meds
Three Prescriptions • 1. Long acting: MS Contin, Oxycontin, Fentanyl
patches, Opana ER, Synalgous
• 2. Short acting: MS IR, oxycodone, hydrocodone 3. Bowel regimen
• The Opioid Naïve Patient: Set scheduled Q 4 h short acting. hydrocodone/oxycodone/morphine 5‐10 mg) PRN’s much more frequent‐q 1. • Tally all meds, scheduled and PRN and create new scheduled dose using long acting medication with breakthrough dose about 10‐15% of total daily long acting dose given q one hour PRN! 15
6/5/2013
Opioid Perils
Number Needed to Treat,(NNT) 2.6 Number needed to Harm (NNH) 8
• Most opioids processed by kidneys
• Testosterone/hypogonadism
• Opioid Induced Neurotoxicity‐twitches or hyper‐
algesia. • Respiratory depression/COPD very rare
• Addiction‐ rare!! (but watch the family) • GI‐ Constipation as long as opioids prescribed
•
Nausea usually transient several days
• Sweating • Sedation transient 2‐3 days
Delirium: Acute change in level of arousal, altered sleep/wake, disturbance of memory and attention, perceptual disturbances with delusions and hallucinations: Fast Facts 001. •
•
•
•
•
•
Hyperactive (13‐46%)‐restless, agitated, confused, hallucinations, “climbing over the bedrails”
52‐88% of terminally ill patients develop delirium
Hypoactive (up to 86%) reduced awareness, psycho motor retardation, lethargy. (Higher mortality than hyperactive)
42% of advanced cancer patients have delirium on admission and 88% at the end of life‐ Terminal Delirium
In cancer patients who develop delirium, 30 day mortality 83% 74% of patients can recall “being confused” in episode of delirium and over 80% said it was distressing DELIRIUMS •
•
•
•
•
•
•
•
•
D Drugs: opioids, anticholinergics
E Eyes (sensory deficit‐sundowning) L Low O2 I, CVA, PE,
I Infection UTI, Pneumonia
R Retention urine/stool
I Ictal (seizures) U Under nourished, under hydrated
Metabolic DM, calcium, Sodium, S Subdural 16
6/5/2013
Treatment
Non‐Pharmacologic First
•
•
•
•
•
•
•
•
•
Minimize catheters, IV’s restraints
Avoid immobility
Monitor nutrition/hydration
Monitor stool and urine output Control pain
Review medications
Minimize noise and interventions/promote sleep
Orientation Board and familiar family
Reorient/redirect communication with patient
Treatment
• Haldol, haldol haldol……..Haldol
• Few anti‐cholinergic effects, minimal cardiovascular effects, lack of active metabolites, versatility of routes of administration. (liquid 2mg/ml, tabs 1, 2 and 5 mg, injectable solutions 5mg/ml • Maximum doses between 20‐100 mg orally
• Parenteral dose about ½ PO dose
• Usual starting dose 0.5‐1 mg Q 6.
• May be given hourly until effective What Else
• Chlorpromazine (Thorazine) 12.5‐50 mg PO, PR, IM, IV (no sub Q) more sedating, helpful for terminal agitation. Can be given hourly and then Q 6
• Can cause severe hypotension
• “Atypical” antipsychotics not shown to be significantly more effective than Haldol but may have less side effects if Haldol dose >4 mg/day. Also have longer half life so less frequent dosing. • Ativan (lorazepam) helps with anxiety but may paradoxically worsen agitation. • Pentobarbital 100‐200 mg po IM or rectal
17
6/5/2013
Feeding Tubes and the Dementia “Death Spiral
• Scenario: Repeat admission for severely demented nursing home patient with pneumonia.
• Patient resists feeding, chokes a little, nurses suggest swallowing study to hospitalist.
• Swallowing study demonstrates aspiration
• GI is consulted for feeding/Peg tube to “improve nutrition, and reduce aspiration.” • tube placed patient returns to nursing home.
• Pulls tube out, restrained replaced gets pneumonia
• AND REPEAT!, Repeat, Repeat
• Family conference
• Death
Fast Facts‐ 084
Feeding Tubes and the Dementia
• 51% of severe AD patients will try to refuse food.
• Inability to maintain nutrition orally in the face of a chronic life limiting illness is usually a marker of the dying process.
• Risk factors INDEPENDENT of patient for getting a feeding tube include: speech therapist on full time staff, larger facility, more Medicaid, fewer assistants
• Nursing Homes receive higher reimbur$ement for tube fed patients.
•
JAMA Evidence‐Care at the Close of Life. McPhee, Winkler Rabow et al editors, Chapter 12 2011 Feeding Tubes DO NOT •
•
•
•
•
•
Prevent aspiration,
Improve function or quality of life,
Increase comfort
Improve weight gain
Improve wound healing
Substantially increase life expectancy
18
6/5/2013
Changes in Hospice
Medicare Patients:2000‐2009
• Number of patients dying at home increased from 24.6% to 32.6%
• Number of terminally ill patients using hospice increased from 21.6% to 42.3 % • However!!! 1/3 of patients dying in hospice had been in ICU in previous 30 days
• Percent of patients dying in under 3 days increased to 28.4%
Plan AHEAd
• Survey of over 500 elderly patients and families (average patient age 80) • 76% had thought about EOL and only 12% wanted aggressive treatment. • 49% had done advanced care plan • 76% formally named surrogate decision maker
• Only 30% had discussed this w PCP and 55% with ANY member of health care team
• Agreement between documentation in the record and patient’s expressed wishes only agreed 30% of the time!
Heyland DK, Barwich D, Picora D; Failure to Engage in Hospitalized Elderly Patients
and their Families in Advance Care Planning. JAMA Internal Medicine 4/1/2013 Tennessee Health Care Decisions Act
2004 TN Code Annotated 68‐11‐1801‐1815
• Streamlines and simplifies healthcare surrogacy, Allows universal DNR Allows physician to choose surrogate if no written request. • Places fine of $2,500 for failure to abide by patients written wishes (or hides or defaces living will) .
• Forms available: www.endoflifecaretn.org
• Do not need notary or lawyer.
• Must be done early in Alzheimer’s if patient is to have capacity. •
19
6/5/2013
Facts of TN HCDA
• Only effective IF patient loses decisional capacity
• If patient divorced, named spouse loses place.
• Takes court order to set aside written AD if patient non‐decisional • Surrogate may be chosen by physician. Should be someone involved with patient with regular contact and available to engage in face to face contact with physician. Document choice.
• Consideration given (in order) spouse, adult child, parent, adult sibling, other adult relative.
•
Section 68‐11‐1706 1‐4
What Does Hospice Bring
• Home hospice is 100% covered by Medicare/ Tenncare and most insurances. Paid on daily per capita basis.
• Regulations require that hospice be delivered by hospice team that includes physician, nurses, nurses aids, chaplains, social workers, therapists dietician and volunteers
• Covers 100% of medications (from formulary) related to comfort care of the terminal illness
• Also covers DME such at hospital bed, O2, wheelchair etc. 20
1:25 PM – 2:25 PM ‘Legal Issues Affecting Persons with Dementia’ Kelly G. Frere, C.E.L.A. Guyton & Frere, Attorneys Lenoir City, TN • Recognize the legal rights of persons with dementia • Define ‘incapacity’ and identify who is responsible for making the determination • Understand options for when legal documents do not work • Understand options for when there is no responsible party available Notes: GmoN&FRERE
ATTORNEYS.'
Matthew B. Frere. LL.M.
Kelly Guyton Frere
Arline Winchester Guyton (Retired)
ELDER LAW SERVICES:
Long Term Care Planning
Special Needs Planning
Medicaid Counseling
Conservatorship
Services
June 4. 2013
I, Kelly G. Frere, do not have a financial interest/
arrangement or affiliation with one or more organizations that
could be perceived as a real or apparent conflict of interest in the
conteAi of the subject of this presentation.
h~ b. C1v-~
KellyG. Frere
Eldtr La'lJ.'AuornrYl
&1 CQUnul/orl • Catifitd
by tht TN Commission
on Continuing
Lrgal Education
and Spuialization
1001 E. Broadway' Lenoir Cit)'. TN 37771
Telephone: 865.694.0373 • Fax: 865.531.9714' E-mail: firm@gfelderlaw.com
27th Annual Alzheimer’s Disease
Research Symposium
June 20, 2013
Legal Issues Affecting Persons with Dementia
Kelly Guyton Frère
Certified Elder Law Attorney
www.gfelderlaw.com
865.694.0373
1.
2.
You run an assisted living facility. One of your residents - Mary - tells you that her son is
coming from Kentucky to take her home with him and that she wants to go. You call
Mary’s daughter, Kathy (who is Mary’s agent under a Power of Attorney), and Kathy gets
a statement from Mary’s doctor that Mary is “incompetent” and can’t make this decision
for herself. Is the doctor’s letter sufficient for you to take instructions from Kathy and not
let Mary leave the facility?
a.
Yes. A physician licensed in Tennessee has the legal authority to declare a person
incompetent and remove their decision-making ability from them.
b.
No. The physician’s statement is only evidence that there’s a problem. Mary can
do whatever she wants - even if she has been diagnosed with dementia.
Bill is a vibrant 70 years old, a widower who lives alone, and has recently been diagnosed
with cancer. His oncologist states that with treatment Bill has a great chance of beating
the cancer. Bill refuses treatment. Bill’s two daughters are upset that he won’t accept
treatment, are convinced that he is just depressed and suffering from some sort of
dementia, and want to force him to accept treatment. They are confident that once cured
he will be glad he consented to treatment. Is there a legal method through which the
daughters can force him into treatment?
a.
Yes. If they can show through medical evidence that treatment has an excellent
probability of either curing him or significantly extending his life expectancy the
daughters can obtain a temporary conservatorship over him to force treatment.
b.
No. Bill can make his own decisions about what medical treatment he does or
does not want even if treatment options are positive and his decision will most
likely result in death.
Page -1-
3.
4.
5.
Two years ago Sam had a massive stroke and was rendered totally incapacitated. His son,
Jerry, went to court and obtained a conservatorship over Sam in order to manage Sam’s
finances and make medical decisions. Now, two years later, Sam has recovered enough
to communicate and make decisions and to move around with assistance. Sam wants to
terminate the conservatorship so that from now on his girlfriend can help him. Can Sam
do this?
a.
No. Once a conservatorship has been established and a person’s rights removed
the conservatorship cannot be terminated because of the presumption that they
don’t have the mental capacity to terminate.
b.
No. The conservatorship cannot be terminated but Sam could convince the court
to replace his son with his girlfriend to be his conservator.
c.
Yes. The ward of a conservatorship (Sam) can petition the court to terminate the
conservatorship but he has to prove with medical evidence that he no longer needs
one.
April fell, broke her hip, and is now in the hospital. April named her sister, June, as her
health care agent but is now on the “outs” with June. April’s doctor, who diagnosed April
with dementia 4 years ago, doesn’t think that April understands the decisions she is
making and calls June. April gets mad and tells the doctor that he is not to listen to June
any more. Which is the best decision for the doctor to make:
a.
The doctor documents April’s chart as to her mental incapacity and only takes
instructions from June.
b.
The doctor can tell that April doesn’t like June so he picks someone else in the
family to make April’s health care decisions.
c.
The doctor tells the hospital’s legal counsel that no one can make decisions and
that the hospital should go to court and get a conservator.
d.
The doctor only listens to the instructions April gives him.
Betty has dementia to the point where she can no longer manage her finances or even
make decisions. Her son, Mark, has started acting pursuant to the POA Betty signed a few
years ago. Betty has been paying the college tuition for each of her grandchildren. When
Mark takes over only Mark’s daughter, Elizabeth, is still in college. Is it okay for Mark to
use his mother’s money to continue to pay his daughter’s tuition.
Page -2-
6.
7.
a.
No. An agent cannot make gifts to his own children out of the principal’s money.
b.
No. An agent cannot make gifts to anyone once he takes over as POA.
c.
Yes. An agent can use the principal’s money for any purpose for which the agent
knows the principal would have used the money and his mother has a history of
making these payments.
d.
Yes. An agent can make gifts if the POA document specifically states that he can.
Arnold is 85, hard of hearing and has night blindness. His doctor was so concerned about
him driving that the doctor contacted the State of Tennessee a year ago and went through
the process of having Arnold’s license revoked. Arnold continued to drive so his son took
his car away. That made Arnold mad so he has threatened to walk to a used car dealer a
mile away and buy another car. His son went to the dealer, showed them the notice
revoking his father’s license, and a letter from the doctor that Arnold is not “safe to
drive,” and told them not to sell his father a car. Can the dealer sell Arnold a car?
a.
No. Arnold’s license was revoked and he cannot purchase a car.
b.
No. The combination of the revocation and the doctor’s statement and the demand
of the agent under the POA are enough to stop the dealer.
c.
Yes. The dealer can sell Arnold as many cars as the dealer wants.
Arlene has a validly executed Power of Attorney for health care decisions and a statutory
Living Will - both of which comply with state law and state that she does not want
artificial methods of support to prolong her life. She has a serious accident and in the
emergency room her son, Ronald, is told that her neck is broken and that she will die
unless she is hooked up to a ventilator. The doctor in the emergency room is holding a
copy of Arlene’s Living Will. Ronald is scared, feels rushed and tells them to hook her
up. After two weeks the ventilator is disconnected and Arlene breathes on her own but is
now in a persistent vegetative state where she will remain for a long time at great
expense. Ronald wants to sue the hospital because the hospital did not honor his mother’s
Living Will. What are his chances in this lawsuit?
a.
Good. Arlene has a valid Living Will of which the hospital was aware and her
wishes should have prevailed.
b.
Not good. As her health care advocate Ronald had the final say and he chose life.
Page -3-
8.
9.
10.
Bernice is 80 years old and has been diagnosed with dementia. Her friends and neighbors
help when they can, but none of them have been appointed legal agents for her. Before
long people start to notice that Bernice’s son, a long time drug addict, is coming and
going from the house. Her friends notice that Bernice’s medicine is disappearing as is the
cash that she keeps on hand for her housekeeper and yard man. When a friend took
Bernice to the bank to get $300 more in cash that was gone, too, after the son visited the
next day. Is there anything the friends can do?
a.
No. Bernice has been diagnosed with dementia but has not been deemed by a
court to need a conservator.
b.
Yes. Anyone can file a court petition to ask that a conservator be appointed, but
whoever files that petition would have to overcome the son’s priority ranking in
the law to be appointed.
c.
Yes. The friends can file for an Order of Protection on behalf of Bernice to keep
the son away.
Harry recently signed a Financial Power of Attorney naming both his son and his
daughter as his agents. He went to an attorney experienced in writing these documents,
and is confident that he has up-to-date documents written specifically to cover his
personal financial matters and which are completely compliant with laws in the State of
Tennessee. Harry is surprised when his son calls him and tells him that his Power of
Attorney is “no good” because the son tried to use it - first at his father’s bank, and then
with the Social Security Administration - and it was declined. Are you surprised?
a.
Yes. Harry has a good document, with valid signature and witnessing language,
and whoever it’s submitted to is supposed to honor it. After all, the agent is
standing in the place of the principal.
b.
No. Harry did the best planning he could, but no one has to honor a power of
attorney document.
Sam had a severe stroke, is not conscious and cannot make his own health care decisions.
He does not have an advance directive for health care decisions (e.g., a health care power
of attorney or advance care plan). His wife wants to stop extraordinary measures and take
him home; his daughter wants the hospital to remain aggressive. Who does the hospital
have to listen to?
Page -4-
11.
a.
The wife, because a spouse is by law the priority decision-maker.
b.
The daughter because the hospital must choose the “retention of life” when there
is a dispute as to continuing care.
c.
Neither.
d.
Either one the doctor chooses.
You know that your mother has dementia. You don’t understand everything the doctor
has told you, but you know she is being treated and you are comfortable with what’s
being done. You know that there are legal reasons for knowing the “degree” of your
mother’s dementia, but a friend tells you there are legal reasons why you should know
what “kind” of dementia she has. Why?
a.
Because legal documents are honored or refused not only for the degree of
capacity a person had at the time they signed their legal documents but also for the
kind of dementia they had at the time.
b.
Because certain government benefits are paid based on the kind of dementia a
person has.
c.
Because your mother can start collecting payments on her long term care
insurance only if she is diagnosed with certain kinds of dementia.
Page -5-
2:25 PM – 3:25 PM ‘The Best Friends Approach to Alzheimer’s Activities’ David Troxel, M.P.H. Writer/Long‐term Care Consultant Sacramento, CA  Describe the difference between structured and unstructured activities  Name three ways to encourage persons with dementia to participate in activity programming  Name three components of an outstanding, contemporary dementia activity program  Describe how to get caregiving staff involved in activities Notes: The Best Friends Approach to
Dementia Care
David Troxel, MPH
Disclosure Statement of
Financial Interest
• I, David Troxel,
DO NOT have a financial
interest/arrangement or affiliation with
one or more organizations that could be
perceived as a real or apparent conflict of
interest in the context of the subject of
this presentation.
Dr. Alzheimer
1
Auguste Deter
• November 25, 1901, 51 years old
• Problems with every day tasks
• Jealousy, delusions
• Memory
• “I have lost myself”
AD or Dementia?
• Dementia is the umbrella term for anything
that causes confusion, memory loss,
personality changes and cognitive decline.
• Alzheimer’s is a type of dementia (others
are mini-strokes, frontal lobe, etc.)
An example
2
The growing power of scans
Be a Best Friend
• What the person with
dementia needs is a
Best Friend, someone
who has empathy and
understanding and is
supportive
Being Person Centered
3
Daphne Gormley, Santa Barbara
• Dx at 59. Credits dementia
meds with helping.
• Uses water soluble crayons and
felt tipped markers for my
paintings. “Rather than limiting
my artwork, my Alzheimer’s
seems to have unleashed a
whole new area of creativity for
me.”
• Emphasizes process rather than
outcome.
• Ambitious, motivated.
• Daphne continues. . .
• “One of the benefits of my art for me is that it
provides me a way of communicating without words.
The colors I use are colors I find to be joyous. This is
a way for me express my joy in painting and in my
life. AD has really taught me to concentrate on the
things I can do not on the things I can no longer do.”
4
Develop “the Knack”
• Knack is the “art of doing difficult things
with ease.”
• Or, “clever tricks and strategies!”
• Helps in unstructured moments.
5
Knack
• Humor
• Flexibility
• Patience
• Respect
• Being in the moment
• Creative activities
Let’s practice
• That President
Eisenhower is doing
a great job.
• I want to go home!
• Turning No into Yes
• You’re late!
Being a Best Friend
6
We Know how to Create a Quality
Dementia Care Program
Purposeful chores
Creative activities
Conversation
Learning &
growth
Using the Life Story
Laughter
Exercise
Music
Animals
Being outside
Tips
• Bullet Cards
• Resident Jeopardy
• 1-100 Campaigns
• Putting Life Story to
work in activity
creation.
• Monthly focus
• Shadow box beauty
shows
• Name tags
7
The Knack & Challenging Behaviors
• Walk a mile in their shoes – empathy
• Look for triggers/causes
• Double or redouble your Life Story efforts
• Offer a consistent approach/language
The Knack & Challenging Behaviors
• Look for medical causes/sudden changes
• Have a “5 New Idea Meeting”
The Knack & Communication
•
•
•
•
•
Persons retain a desire to communicate
Ask opinions
Give compliments
Provide cues and cues
Tie in to the life story
8
Do you like my tie?
9
The Impact of Best Friends
www.bestfriendsapproach.com
www.facebook.com/bestfriendsapproach
10
NOTES:
3:45 PM – 4:45 PM ‘Building a Culture of Care in Alzheimer’s Programs’ David Troxel, M.P.H. Writer/Long‐term Care Consultant Sacramento, CA  Name three elements of culture change in long term care  Describe three ways to effectively train and support staff  Describe how a positive culture can reduce behavior challenges  Describe how a positive work culture can support business success Notes: 6/11/2013
• Best
Building a Culture of Care in Alzheimer’s Programs
David Troxel, MPH
1
Disclosure Statement of Financial Interest
• I, David Troxel, DO NOT have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation. Changing the Outcome
Loss
Isolation & Loneliness
Sadness
Confusion
Worry/Anxiety
Frustration
Fear
Paranoia
Anger
Embarrassment










Fulfillment
Connection
Cheerfulness
Orientation
Contentment
Peacefulness
Security
Trust
Calm
Confidence
1
6/11/2013
The Person with Alzheimer’s Disease
Auguste Deter
• Best
Harry Nelson
The Physical
Environment
Hall of shame!
2
6/11/2013
Hall of shame!
Hall of shame!
Elevator key pad in a skilled nursing building
Hall of shame!
3
6/11/2013
“Life Stations?”
Can be of interest if staff engages with residents/clients
Can also be a marketing gimmick
Baths often underused
Best practices don’t need to be expensive
4
6/11/2013
Raised flowerbeds
Inviting and welcoming bulletin boards
Outdoor space
5
6/11/2013
Nostalgic pictures
– Start a conversation: “What do you like best about your home town, San Francisco?”
– Enjoy an old saying: “The coldest summer I ever spent was a winter in San Francisco” (Mark Twain)
– Reminisce about cable cars
Take‐Home Points

Create an environment where there’s no place the person can’t go

How can we make places more interesting?



Dining room vs. “The Seattle Club”
Hair salon vs. “Sophie’s Hideaway”
Activity room vs. “Wednesday Club”
• Best
Our Staff
6
6/11/2013
What do we want in our staff?
Person centered
Ethical
Flexible
Willing to learn and grow
Know the Life Story
Positive
Teamwork
Skilled Engaging
Dependable
Knack

Humor

Flexibility

Patience

Respect

Being in the moment

Creative activities
Where do we start?
7
6/11/2013
For ideas and inspiration
What work can represent for staff

Safe harbor

Place for community

Place for success

Place where someone cares for me
How we begin to change

From a job and workplace to a caring community
8
6/11/2013
Tips for Hiring Best Friends Staff
• Hire for the heart. . . . Train for the task.
• Kay Kallander, ABHOW
Innovative Training (elements handout) 
Includes everyone

Teaches the right content—skills over information

Not too much in any one class

Involves games and role playing
Innovative Training

Takes place in an environment that facilitates learning

Involves follow through and modeling

Teaches life skills

Is culturally appropriate
9
6/11/2013
Innovative Training

Involves the person and family members

Provides incentives for learning and growing

Is evaluated by students on a regular basis
Recognition
How do we best do this?
A Fundamental Principle
We cannot treat staff badly and then expect badly treated staff to treat residents well.
10
6/11/2013
Can we create buy‐in?
• Create a team poster for all to sign
• Revise job descriptions and have team “re‐up” for the memory care job
• Contests and campaigns are fun and successful (but don’t overdo)
• Best
The Business Case for
Best Friends™ and
Quality Programs
The marketplace
…..Will reward you when you do a great job!
11
6/11/2013
Distinctive programming
• Pays off and doesn’t necessarily cost any more money.
“Make your memory care memorable.” ―David Troxel
34
Families
• Are more and more interested in training
• Are well informed and increasingly sophisticated about dementia care
• Want to use their financial resources well
• They know a good program from a not‐so‐good program
Staff
• Do better when skilled
• Families notice when staff have enthusiasm, • Have more buy‐in when interest, and skill!
relationships form
• We need to take best • Good programs almost practices from other always mean less industries and enhance turnover
our staff training programs!
12
6/11/2013
The person with dementia
• Responds to a joyful, positive environment
• May not want to elope when there are things to see and do!
• Has fewer behavior issues when happy
• Will cooperate with personal care when approached well
• Benefits from the feelings of friendship and connection
You can see the difference!
• www.bestfriendsapproach.com
• www.facebook.com/bestfriendsapproach
13
NOTES:
The 27th Annual Alzheimer’s Disease Symposium June 21, 2013 (Day Two) “Focus on the Science” 8:10 AM ‐ 9:10 AM ‘The Amnestic Dutchman’ Daniel D. Christensen, M.D. Clinical Professor of Psychiatry Clinical Professor of Neurology Adjunct Professor of Pharmacology University of Utah Salt Lake City, Utah  Recognize early signs and symptoms of Alzheimer’s Disease  Appreciate the course of Alzheimer’s Disease from diagnosis to autopsy Notes: 6/3/2013
The Amnestic Dutchman
Daniel D. Christensen, M.D.
Clinical Professor of Psychiatry
Clinical Professor of Neurology
Adjunct Professor of Pharmacology
University of Utah
Objectives
1. To understand the common AD symptoms
which lead to medical attention and diagnosis
2. To recognize how an accurate AD diagnosis
is made.
3. To follow the disease course of an AD
patient from diagnosis to autopsy
4. To understand how AD is diagnosed at
autopsy
Normal changes with ageing
Brain loses cells (beginning in one’s 20’s)
Ageing changes usually first noticed in late 40’s
Memory isn’t as fast
Takes longer to learn
Harder to “multi‐task”
Names, words, places sometimes can’t be recalled
“on the spot” but later come to mind
Can compensate using lists, routines, associations
Changes do not impair one’s ability to function
Changes don’t get progressively worse over time
Remote memory remains intact
1
6/3/2013
When to be concerned
Usually no concern
Should be concerned
Repeats something once
Repeats > 2 times Doesn’t remember details
Doesn’t remember the event
Can’t function as fast
Can’t plan and organize
Can’t recall a name or fact,
but it comes to mind later Can’t recall how to do
something one has done
many times before
Doesn’t interfere with daily
functioning
Interferes with daily
functioning
The Diagnostic Process
History
Physical Exam
Laboratory Data
Cognitive / Functional Assessments
The Diagnostic Process
History
‐ 85 yo gentleman with a 2yr history of
gradual memory impairment
‐ Good physical health
‐ No alcohol or tobacco use
‐ Current medications:
multi‐vitamin
fenoprofen 600 mg qid prn
2
6/3/2013
Family History and the risk of
late‐onset Alzheimer’s
Meta‐analysis of 10 studies (1982 ‐ 1990)
Relative Risk of AD in those with one first degree
relative with AD = 3.5 (95% Cl 2.6 – 4.6) R R in those with two or more first degree
relatives with AD = 7.5
VanDuijn et al, Int J of Epidemiology, 1991, 20
The Diagnostic Process
Physical Exam
‐ Complaint, occasional joint pain
‐ No abnormalities on exam
‐ Good vision and hearing
‐ Height 5’ 7”
‐ Weight 151 lbs
‐ Blood Pressure 130 / 70
The Diagnostic Process
History
Physical Exam
Laboratory Data
Cognitive / Functional Assessments
3
6/3/2013
The Diagnostic Process
Laboratory Data
The diagnostic workup for Alzheimer’s
Disease should always include a structural scan (CT or MRI).
Potentially reversible causes
of Dementia
•
•
•
•
•
•
•
•
D
E
M
E
N
T
I
A
Drugs
Endocrinopathies
Metabolic disorders
Emotional depression
Nutritional deficiencies
Tumor / trauma
Infirmities of the senses
Arteriosclerosis
Potentially reversible dementias
Causes and outcomes
Improvement (%) Partial Complete Total
Drugs (including alcohol)
Depression
Hypothyroidism
B12 deficiency
Other metabolic causes
Nl pressure hydrocephalus
Subdural hematoma
Cerebral tumor
Other
16
6
‐
4
8
5
4
68
12 28
17 9
1
7
1
1
4
8
3
11
1
6
‐
4
9
1
32 100
26
10
Ann Intern Med 1988: 109, 476‐486
4
6/3/2013
The Diagnostic Process
History
Physical Exam
Laboratory Data
Cognitive / Functional Assessments
Alzheimer’s Disease
DSM IV Diagnostic Criteria
Memory impairment
One or more:
aphasia, agnosia, apraxia, impaired executive function
ADL’s
Impaired functioning
Insidious onset, Gradual progression
Other potential causes
Ruled out
5
6/3/2013
Cognitive Decline
“Normal Aging”
“Normal”
MCI
Mild Cognitive Impairment
Dementia
Petersen, Alzheimer’s & Dementia, 2005
New Diagnostic Approach
2011 Proposal
Expands AD to three “phases”
Asymptomatic / preclinical
Symptomatic / pre‐dementia
Dementia
Requires reliable surrogate biomarkers
(which we don’t yet have)
6
6/3/2013
Potential AD Biomarkers under investigation
A. Structural evidence: Medial temporal atrophy
B. Biochemical evidence: Alteration in A &/or Tau
C. Neuroimaging evidence: FDG PET, amyloid imaging
D. Genetic evidence: Autosomal dominant mutation
Dementia D/Dx
Features that favor the Dx of:
Alzheimer’s Disease
Age 65 or older
Insidious onset
Gradual progression
Prominent memory difficulty
No focal signs / sx
No gait abnormalities
Dementia D/Dx
Features that favor the Dx of:
Lewy Body Dementia
Visual hallucinations
Extrapyramidal symptoms
(shuffling gait, masked facies,
rigidity, gait instability)
Waxing / waning alertness
Neuroleptic supersensitivity
7
6/3/2013
Dementia D/Dx
Features that favor the Dx of:
Frontotemporal Dementia
Behavioral disinhibition
Apathy / Social withdrawal
“Personality change”
Socially inappropriate behavior
Euphoria / irritability
Nonfluent aphasia
Dementia D/Dx
Features that favor the Dx of:
Vascular Dementia
Abrupt onset
Focal neurological signs & symptoms
Stepwise deterioration
Atherosclerosis / TIA’s
History of strokes
History of hypertension
Risk and protective factors
Risk
• Age
• Family history
• Mutations (1, 14, 21)
• Apo 4
• Down’s syndrome
• Head trauma
• MCI
• Hypercholesterolemia
• Hypertension
• Diabetes
Protective (?)
• Education • Some NSAIDs
• Anti‐oxidants
• Statins • Apo 2
• Low fat diet
• Aerobic exercise
• Mental activity
• Estrogen • Vit B12 / Folate
8
6/3/2013
Reducing the risk of Dementia
Maintain healthy blood pressure
Stay physically fit / exercise
Stay mentally active / Reduce stress
Avoid head injury (seat belts / helmets)
Maintain a healthy diet
Low‐fat / low cholesterol
Low to Moderate wine intake
Pharmacologic prophylaxis (?)
Vitamin B12, Folate
Statins
Some NSAIDs
Symptomatic Treatment
Treatment that may benefit some
symptoms, but the basic disease
process is unchanged so the
patient eventually returns to a
course of progressive degeneration.
Symptomatic Therapy in AD
A. Improved over baseline
Global Function
B. Delayed decline
C. Improved over expected
Untreated Course
Rx
Treated Course
t
27
9
6/3/2013
Acetylcholinesterase Inhibitors & NMDAReceptor Antagonist Efficacy: Cognition
Namenda® (SIB)
2
0
-2
-4
-6
-8
-10
-12
0
4
12
Weeks
28
End
Point
Reisberg et al, NEJM 2003;348:1333-41
Long Term effects: ADL and Cognition
AD2000 Study (donepezil)
MMSE
Change
From Baseline
Time (weeks)
2
0
12 24 36 48 60 72 84 96 108 120
Better
0
-2
-4
-6
Worse
-8
Remaining subjects
Donepezil
Placebo
282 262 220 182 162 157
283 269 230 185 162 160
81
74
Donepezil
Placebo
AD2000 Collaborative Group. Lancet. 2004;363 (9427):2105-2115
Disease Modifying Treatment
Treatment that changes the basic
pathology of the disease so that
the actual disease process is slowed or stopped.
10
6/3/2013
Disease Modifying Treatment in AD
(Theoretical)
Improvement
Global function
Stabilization
More benign course
Expected decline
t
Rx
? Future Alzheimer’s Disease Management ?
Risk Factors
Age
Family history
Head injury
CV factors
Tests
Amyloid imaging
Eye laser scan
Skin enzyme levels
Gene expression chip
ApoE status
Risk
HIGH
MOD
Treatment
Control risk factors
Diabetes
Lose weight
Exercise
Diet
Medications
Disease‐modifying
LOW
medication
Potential AD drugs which have
failed clinical trials
Neramexane
Phenserine
Colostrinin
Xaliproden
Luprolide
PBT‐2
LY450139
Clioquinol
AN-1792
Rosiglitazone
Alzhemed
Flurizan
Dimebon
Neotrophin
11
6/3/2013
Alzheimer’s Disease Diagnosis
Clinical Diagnosis
DSMIV Diagnostic Criteria
Based on symptoms and
laboratory findings
Pathological Diagnosis
CERAD Neuropathological Criteria Based on autopsy findings
(How many neuritic plaques are present and where are
they located ?)
Braak Stages (tangles)
Stage 1 – Very Mild
Staged as Mild, Moderate
or Severe
(Commonly by MMSE)
Stage 6 – Very Severe
At baseline, Marinus met DSM IV
diagnostic criteria for Alzheimer’sDisease.
What is the probability that he will
meet pathologic diagnostic criteria for AD at
autopsy?
A. 10%
B. 50%
C. 85%
D. 98%
Predictive value of clinical
diagnostic criteria for Alzheimer’s
About 85% of those who meet diagnostic
criteria during life will meet neuropathologic
criteria for Alzheimer’s Disease at autopsy.
(Range 75 ‐ 97%)
J Am Geriatric Society 1999; 47: 564 ‐ 569
Alz Disease and Assoc Disorders 1996; 10: 180 ‐ 188
Neurology 1995; 45: 461 ‐ 466
Neurology 2000; 55: 1854 ‐ 1862
12
6/3/2013
Dementia
Etiology
56% Alzheimer’s
15% Vascular
12% Mixed
8% Parkinson’s
4% Brain injury
5% Other
? 15 - 25% Lewy Body ?
? 15 - 25% Frontotemporal ?
Neuropath findings in 233 dementia cases
Other 3%
PSP 2%
DLB
6%
DLB+V
7%
AD + DLB
22%
HS
9%
AD
14%
Vas
10%
AD+V
12%
AD+DLB+V
13%
U of Washington, 2006
13
6/3/2013
RAV1
Basic ADL’s
Eating
Grooming
Dressing
Bathing
Toileting
Walking
14
9:10 AM – 10:10 AM ‘Vital Brain Aging: An Approach to Cognitive Health Care’ William R. Shankle, M.S., M.D., F.A.C.P. Director of Memory and Cognitive Disorders Program Hoag Neurosciences Institute Medical Director, Shankle Clinic Newport Beach, CA  Recognize risk factors for ADRD and the importance of managing these risk factors  Recognize underlying medical conditions associated with memory loss and other types of cognitive impairment.  Understand importance of early detection of memory loss  Understand different types of treatment options for different types of ADRD Notes: NOTES:
10:20 AM – 11:10 AM ‘Differential Diagnosis in Dementia’ John H. Dougherty, Jr., M.D. Medical Director, Cole Neuroscience Center University of Tennessee Medical Center‐Knoxville Knoxville, TN  Understand the differential diagnosis of the primary degenerative dementias  Have a working knowledge of the secondary causes of dementia Notes: 6/3/2013
Differential Diagnosis of Dementia
John H. Dougherty, Jr. M.D.
Medical Director
Cole Neuroscience Center
Dementia
Cognitive Domains
Insidious onset, slowly
progressive
• Impaired social or
professional skills
• Abnormalities of two
cognitive domains
Memory
Verbal Fluency
Executive Function
Visual Spatial
– Anosognosia
– Normal Gait
Attention
Orientation
If the above criteria are adhered to one can be 85-90 % confident that the
clinical diagnosis of AD is correct.
A Dementia can be either:
Primary
- or Secondary
1
6/3/2013
Differential Diagnosis of
Dementia
Primary Dementias:
Frontal lobe dementia
Parkinson’s disease
Progressive supranuclear
palsy,others:
Vascular Dementias:
1. Multi-infarct dementia
2. SID,SVCVD
(Binswanger’s disease)
Diffuse Lewy Body
Disease*
Vascular dementias
and AD
AD
5%
10%
AD and Lewy
body dementias
65%
5%
7%
8%
Small GW, et al. JAMA. 1997;278:1363-1371.
American Psychiatric Association. Am J Psychiatry. 1997;154(suppl):1-39.
Morris JC. Clin Geriatr Med. 1994;10:257-276.
Features of Primary Degenerative
Dementias
Alzheimer’s
Disease
• Makes up
~60% of
dementia cases
• Usually
involves
memory
Diffuse Lewy
Body
• Form visual
hallucinations
• Example
(purple rabbit)
Frontotemporal
Dementia
• Loss of
Judgment
• Social
misconduct
• Lack of social
awareness
Parkinson’s
Dementia
Vascular
Dementia
• Executive
function and
visual abilities
impaired before
memory
• Documented
cerbrovascular
disease
• Sudden onset
Vascular Risk Factors
•
•
•
•
•
Hypertension
Hyperlipidemia
Diabetes
Obesity
Smoking history
•
•
•
•
•
TIA
Hx: Strokes
Cardiac Disease
PVD
Atrial fib or
arrhythmias
2
6/3/2013
Copyright 2005, Journal Sentinel Inc. All rights reserved. Reprinted by permission
Risk Factors
Alcohol
Abuse
Physical
Exercise
Age
Factors
We
Can’t
Change
Down’s
Syndrome
Blood
Pressure
Factors
We Can
Change
Smoking
Cholesterol
Family
History
Depression
Diabetes
3
6/3/2013
Secondary Dementias
• Infection: CJD,HIV,Crypto.
• Metabolic: Hypothyroid.
• Deficiency States: B12 def.
• Toxins: Abuse of Alcohol, Drugs, Heavy Metals.
• Cancer: Brain Tumors
• Trauma: SDH
• Others: NPH, Depression
New criteria for the diagnosis of
Alzheimer's disease
• MCI- Prodromal Alzheimer’s Disease
– Minimal cognitive abnormalities
– Increased conversion rate to dementia.
– Prodromal dementia has replaced “Pre-Dementia”
• Biomarker
– Defined: Objectively measured and evaluated
criteria, identifying specific brain pathology
common to Alzheimer’s disease.
– No clinical signs or symptoms of cognitive
impairment. “Pre-Clinical”
Mild Cognitive Impairment (MCI)
• Usually impairs only
one cognitive domain
15%
Convert to AD
– Most often memory
(aMCI)
• Insidious in onset
• Does not impair social
or professional skills
• If multiple cognitive
domains impaired
then high probability
for AD conversion
MCI
Outcomes
1 Year
40%
Unchanged
20% Improve
4
6/3/2013
Biomarker Criteria:
• A significant abnormality of episodic memory of at least 6
months duration
• At least one of the following:
1. Temporal lobe atrophy on MRI
2. Abnormal FDG/PET biparietal hypometabolism
3. Abnormal PET/CT amyloid imaging:
4. CSF (decreased beta-amyloid, increased tau)
5. Blood or serum analysis – not yet available
Dubois et. al. Lancet Neurology, 2007, Vol 6, 734
Shaw et al. Ann.of Neurology. 2009, vol. 65, 403
Changes in Biomarkers over Time
Biomarkers establish progression of disease
5
6/3/2013
*The course of AD pathology is
likely to be 20 to 30 years*
Ethical consideration
&
Opportunities for treatment
M.W. Weiner et al./Alzheimer’s & Dementia 8 (2012) S1-S68
Biomarker- MRI
• MRI- Magnetic Resonance Imaging
• Visualization of Brain Structure
• Detection of Atrophy in specific brain regions
M.W. Weiner et al./Alzheimer’s & Dementia 8 (2012) S1-S68
6
6/3/2013
Biomarker- FDG/PET
•PET/CT (Positron Emission Tomography)
•FDG (Flurodeoxyglucose)
Detects glucose hypometabolism
Biomarker- Amyloid Imaging
Amyvid (Florbetapir F 18)
• Binds to Aβ protein
• Enables diagnosis of
Aβ plaque before death
Biomarker- CSF
• CSF-Cerebral Spinal Fluid
• Decreased β-amyloid 42
• Increased Tau
7
6/3/2013
Biomarker-Blood or Serum Analysis?
Decreased Connectivity by DTI
Alzheimer’s and Dementia, July 2008 Vol.4 p.265
John Dougherty and Yongxia Zhou
AD
MCI
NC
Lowest FA
Highest FA
Green: PCC ROI
Red: Fiber tracts connecting ROI to the whole brain
Amyloid in the healthy aging Brain
Amyloid Positive
Amyloid Negative
All subjects have normal cognition
K.M. Rodrigue et al./ Neurology 78 (2012) 387-395
8
6/3/2013
Biomarkers detect conversion rates to
Alzheimer’s Disease
+ Amyloid
- Amyloid
All subjects had MCI
+ Amyloid subjects had more
hippocampal atrophy and
ventricular enlargement
+ Amyloid subjects progressed
to Alzheimer’s disease
- Amyloid subjects did not
progress to Alzheimer's
disease in a median timeframe
of 1.7 years.
CR Jack et al., Brain (2010) 133.
Cognitive Screening Tests
• MMSE: Mini-Mental State Examination
• CST: Computerized Screening Test
• MoCA – Montreal Cognitive Assessment
Early detection is critical!
MMSE
• No test for verbal
fluency
• Heavily weighted
towards orientation
• Poor evaluation of
executive function
9
6/3/2013
185
CST is a Validated Cognitive Tool
Computerized Cognitive Self Test
Verbal Fluency – Animals
29
Cholinesterase Inhibitor Delays
Conversion from MCI to AD
first 24 months
MMSE Score
(Changes from baseline)
12mo
24mo
36mo
Cholinesterase
Inhibitor
-0.31+/-2.*
-0.98+/-2.*
-2.31+/-3
Placebo
-0.80+/-2.
-1.49+/-2.
-2.75+/-4.
*P<0.05
N Engl J Med 2005;352:2379-88.
10
6/3/2013
Preventive Treatments in Alzheimer's
Disease
Anti-oxidative agents:
• Vitamin E •Folate Supplement •Fish •Omega-3 Fatty Acids
Anti-inflammatory agents:
• NSAIDs: Ibuprofen
Cholesterol lowering agents:
• Statins
Preventive Treatments in Alzheimer's
Disease
*Exercise*
Physical & Mental
Aerobic Exercise Benefits Cognition
•Hippocampus is vital for
memory function
•Increased CBV (Cerebral
Blood Volume) in a
specific region of the
hippocampus, the Dentate
Gyrus
• Increased CBV
correlates to Angiogenesis
and Neurogenesis.
•Exercise increases
episodic memory
performance
40 min aerobic exercise 4X a week for 12 weeks
Pereira AC, Huddleston DE, Small SA et al., PNAS 104:13 (2007) 5638-5643
11
6/3/2013
Physical Exercise
•
•
•
•
•
•
Brisk Walking
Indoor Cycling
Water Aerobics
Light Weights
Gardening
Vacuuming
4 Hours Per Week
Mental Exercise
•
•
•
•
•
•
Read Books
Crossword Puzzles
Chess
Scrabble
Sudoku
Attend Cultural Events
•plays •museums •athletic events
12
6/3/2013
Healthcare Crisis Today
• At present 5.2 million people in the United States have AD.
• 60% of all nursing home admissions are the result of a
dementing illness, most commonly AD.
• AD is the sixth leading cause of death in the United States.
• The total lifetime cost of care for a patient with AD is estimated
to be in excess of $274,000.
• The total cost of care in the United States for patients with AD
is currently estimated to be >$700 Billion.
• Estimated 35.6 million people worldwide living with dementia
Alzheimer’s disease and the
Healthcare Crisis
• As many as 60% of the patients with AD may
go undiagnosed In the primary care setting1
• As many as ~40% of the diagnosed
patients may not receive pharmacologic
treatment 2
1 Knopman et.al.Journal American Geriatrics Society 2000;48: 300
2 Datamonitor 2002
Forecast of Alzheimer’s Disease
Prevalence in the U.S.
2000
2030
2050
4.5 Million (est)
7.7 Million (est)
13.2 Million (est)
65-74 Years
75-84 Years
85+ Years
Source: Hebert LE, et al. Arch Neurol. 2003;60:1119-1122.
13
6/3/2013
Delay the Onset
Alzheimer's disease usually develops slowly, taking many years to get to the point
where symptoms become noticeable and Alzheimer’s disease is most common in
the elderly population.
If we could delay the onset of AD for 5
years, we would in effect reduce the number
of patients with Alzheimer’s disease
by one half
(We can currently delay the symptoms of Parkinson’s disease 3- 5yrs)
(AD prevention and evidence based medicine)
Benefits of Early Diagnosis
• Increase Communication
 Inform patient and family of diagnosis
 Treat with cholinesterase inhibitors
 Manage and treat behavioral problems
• Institute plan for non pharmaceutical treatments





Exercise
Nutrition
Cognitive stimulation
Behavioral therapy
Treat all medical problems aggressively
• Cost reduction
 VA Study in Minneapolis shows that early screening and diagnosis of memory
problems results in a dramatic decrease in cost of care over the life time of a
Alzheimer’s patient
Pharmaceutical Treatment Strategies
• Start with cholinesterase inhibitor
– Patch has few side effects
– Donzepil is generic
• Create personalized treatment plan based
on cognitive domains affected
• Add Namenda at moderate to severe AD
classification if cholinesterase inhibitors
appear no longer effective.
14
6/3/2013
Primary Care Physicians
• Identify patient through screening: benign
atypical Alzheimer’s disease or vascular
dementia.




Geriatric population
Insidious onset
Slowly progressive
Few behavioral issues
• Follow up every 6 months
 Repeat cognitive test to track progression
 Follow up with medication and activities of daily living
 Neurologist consultation is generally not necessary
Primary Care Physicians
• Refer patients to Neurologists with the
following clinical profile
 Early onset Alzheimer’s (less than 60)
 Patients with another primary degenerative dementia i.e.
frontotemporal, diffuse Lewy body and vascular dementia
 Presentation of hallucinations or social inhibition
Sources for Assistance
• Alzheimer’s Tennessee
– Day program
– Assisted living facilities
– Support groups
• Clinical trials
• Caregiver support is vital
15
11:10 AM – 11:55 AM ‘Falling Down: Falls and Gait Disorders in Older Adults’ Monica K. Crane, M.D. Clinical Assistant Professor of Medicine, Department of Medicine, University of Tennessee Medical Center‐Knoxville, Associate Director, Senior Assessment Clinic Director of Research, Cole Neuroscience Center Knoxville, TN  Understand the prevalence and clinical importance of falls  Understand the risk factors for falls  Know how to conduct an office gait assessment  Become familiar with different gait disorders associated with falls Notes: 6/5/2013
Falling Down:
Falls and Gait Disorders in Older
Adults
Monica K. Crane, MD
Associate Director
Senior Assessment Clinic, Cole Neuroscience Center, UTMC
Alzheimer’s TN SYMPOSIUM 5/29/13
Objectives
1. Understand the prevalence and clinical
importance of falls.
2. Understand risk factors.
3. Know how to conduct an office gait
assessment.
4. Become familiar with different gait
disorders.
5. Prevention.
Fall: coming to rest inadvertently on
the ground or at a lower level.
• One of the most common geriatric
syndromes.
• Most falls are not associated with
syncope.
1
6/5/2013
Q: Is falling a part of normal aging?
Camicoli R, Moore MM, Sexton G et al. Age-related changes associated with motor function in healthy older
people. JAGS. 1999;47:330-334.
A: No. But falls are common in older
adults.
Camicoli R, Moore MM, Sexton G et al. Age-related changes associated with motor function in healthy older
people. JAGS. 1999;47:330-334.
How common are
traumatic falls?
• 1/3 of older adults (65+) have
traumatic fall.
• 50-66% of these falls occur at
home
• 30-56% of patients in long-term
care settings fall within the first 6
weeks after admission.
• 50% of nursing home patients
will fall.
Stevens JA. Fatalities and injuries from falls among older adults — United States, 1993–2003 and 2001–2005. MMWR 2006;55(45).
Vellas BJ, Wayne SJ, Romero LJ, Baumgartner RN, Garry PJ. Fear of falling and restriction of mobility in elderly fallers. Age and
Ageing 1997;26:189–193.
Donald IP, Bulpitt CJ. The prognosis of falls in elderly people living at home. Age and Ageing 1999;28:121–5.King MB, Tinetti ME.
Falls in community-dwelling older persons. JAGS. 1995;43:1146-1154.
Verghese J, LeValley A, Hall CB, Katz MJ, Ambrose AF, Lipton RB. Epidemiology of gait disorders in community-residing older adults.
JAGS. 2006;54:255–261.
2
6/5/2013
Why should we care?
• Falls are the #1 cause
of accidental death in
older adults.
• Up to 10% of patients
with a hip fracture will
die within 30 days of
surgery and 30% will
be dead within one
year.
Jager TEWeiss HB, Coben JH, Pepe PE. Traumatic brain
injuries evaluated in U.S. emergency departments, 1992–
1994. Academic Emergency Medicine 2000;7(2):134–40.
Tinetti ME, Williams CS. Falls, injuries due to falls, and the
risk of admission to a nursing home. New England Journal
of Medicine. 1997;337:1279–1284.
Dargent-Molina P, Favier F, Grandjean H, Baudoin C,
Schott AM, Hausherr E, Meunier PJ, Breart G. Fall-related
factors and risk of hip fracture: the EPIDOS prospective
study. Lancet. 1996;348:145–149
Peter V Giannoudis, Erich Schneider AO Principles of
Fracture Management. 2007.
,
Why should
EVERYONE care?
Fall cost Americans nearly
$40,000,000,000 every year
Bohl et al. The Gerontologist (2012) 52 (5): 664-675.
Stevens JA, Corso PS, Finkelstein EA, Miller TR. The costs of fatal and non-fatal falls among older adults. Inj Prev.
2006;12:290–295.
Alexander BH, Rivara FP, Wolf ME. The cost and frequency of hospitalization for fall-related injuries in older adults.
American Journal of Public Health 1992;82:1020–3.
Who is at risk?
3
6/5/2013
Risk factors
•
•
•
•
•
Age > 80
Orthostasis
Fear of falling
History of falls/syncope
Polypharmacy
– Sedatives, opiates,
benzodiazepines,
anticholinergics, etc
• Gait instability
• History of CVA, PD, or
dementing illness
• Alcohol
• Environmental
• Incontinence
• Visual impairment
Bell AJ, Talbot-Stern JK, Hennessy A. Characteristics and outcomes of older patients presenting to the emergency department after a
fall: a retrospective analysis. Medical Journal of Australia 2000;173:176–7.
Hausdorff JM, Rios DA, Edelber HK. Gait variability and fall risk in community-living older adults: a 1-year prospective study. Archives
of Physical Medicine and Rehabilitation 2001;82(8):1050–6 Tinetti ME. Clinical practice. Preventing falls in elderly persons. New
England Journal of Medicine. 2003;348:42–49
Verghese J, Wang C, Lipton RB, Holtzer R, Xue X. Quantitative gait dysfunction and risk of cognitive decline and dementia. Journal
of Neurology, Neurosurgery & Psychiatry. 2007;78:929–935.
Fear of falling
Q: Do older adults worry about falls?
A: 80% of older women preferred death
to a “bad” hip fracture resulting in
nursing home admission
BMJ2000;320doi: http://dx.doi.org/10.1136/bmj.320.7231.341(Published 5 February
2000)
Common gait
disorders
Alexander NB. Differential diagnosis of gait disorders in oler adults. Clin Geriatr Med. 1996;12:697-698.
Alexander MB. Gait disorders in older adults. JAGS. 1996;44:434-451.
4
6/5/2013
Gait disorders at low sensimotor level
Classification Condition
Gait findings
Peripheral Sensory
neuropathy ataxia
Uncoordinated
(posterior column,
peripheral neuropathy)
Weaving or drunk gait
Hesitant
Vestibular
ataxia
Visual ataxia
Peripheral
motor
Arthritis
Avoids weight bearing on
affected side Painful hip
may produce
Trendelenburg gait (trunk
shift over affected side)
Peripheral neuropathy: B12
deficiency
•B12 deficiency associated with diminished
proprioception and ataxia in adults; CBC
may be normal
• Improvement within 2-3 mos of B12 Rx if
any improvement at all
•Reversibility depends on severity and
duration
Alcohol and Gait Disorders
•Severity of gait disorder
related to duration and
quantity of alcohol
consumption.
•Peripheral neuropathy and
cerebellar degeneration may
occur independently or
simultaneously.
•Both gait & neuropathy may
improve with abstinence.
5
6/5/2013
Gait disorders at mid/high sensimotor level
Classification Condition
Gait findings
Parkinson’s
disease
Shuffling, hesitation, festinating,
retropulsion, en bloc turns, arm swing 
Cerebellar
ataxia
Wide-based, trunk sway, irregular
stepping on turns
Cautious
gait
Wide-based slow gait, shortened stride
(looks like shuffling), maintains
appropriate postural responses
Frontal &
Small
white matter vessel
disease
disease/
CVD FTD)
NPH
Gait ignition failure, short shuffling
steps with arm swing intact; wide-based
posture
FTD – frontal gait: unable to maintain
upright posture; autonomic failure;
muscle atrophy
Gait changes in Parkinson’s
Lewy Body Dementia
– Symptoms and gait changes that resemble
Parkinson’s.
– Degeneration of autonomic system.
– Considerable cortical degeneration similar to
Alzheimer’s disease.
6
6/5/2013
Gait management for PD
•Rule out drug-induced parkinsonism
•Rolling walker is usually most
appropriate assistive device
•Exercise may improve balance & gait
•Avoid carrying items in arms
Cerebellar disorders
• Most often, vascular or alcohol-related
• Truncal ataxia without limb dysmetria often
seen with atrophy or infarction of vermis.
• Individual muscle strength normal, tone
normal; finger to nose, heel to shin often
normal.
• Benzodiazepines worsen gait; 28-fold
increase in fall risk!
Alzheimer’s disease
• Cautious gait
– Hesitant, slow gait
– With severe disease a gait
apraxia occurs
• Visuospatial deficits
• Balint’s syndrome
7
6/5/2013
VASCULAR DEMENTIA
Vascular dementia
• Large vessel
disease
(post-stroke)
• Small vessel disease
– Executive function problems
– Gait disorder
• Gait ignition failure, short shuffling
steps with arm swing intact; widebased posture
– Depressive symptoms
– Emotional lability
– Memory problems
Progressive supranuclear palsy (PSP)
KEY FEATURES
•FALLS and postural
instability within 1st year of
diagnosis.
• Vertical supranuclear
opthalmoparesis
• Upward gaze paresis with
abnormal saccadic eye
movements.
•Axial rigidity
•Cognitive decline
Dudley Moore
(1935-2002)
8
6/5/2013
Fall and gait
assessment in
your office
Stevens JA. Falls among older adults—risk factors and prevention strategies. NCOA Falls Free: Promoting a Natio
Falls Prevention Action Plan. Research Review Papers. Washington (DC): The National Council on the Aging; 200
http://www.cdc.gov/ncipc/factsheets/adultfalls.htm
Office visit: HISTORY
•
•
•
•
•
•
Fall time, location, pain
Medications
Vision problems
Vestibular: dizziness, lightheadedness
Auditory: decreased hearing, tinnitus
Cerebellum: alcohol, movement
disorder
• Basal ganglia: Slowed movements,
tremor
• Sensory: imbalance in the dark,
numbness
• Strength: proximal muscle weakness,
leg/foot weakness, difficulty climbing
stairs and getting out of a chair,
fatigability
Gait specific physical exam tests
1. Finger to nose
2. Rapid alternating movements
3. Heal knee shin
4. Get up and GO
5. Hallway walk and tandem gait
6. Rhomberg test
7. Postural stability
8. Functional reach
9
6/5/2013
1. Finger to nose (cerebellar)
• The patient is asked to touch
their nose, then the doctor’s
finger in rapid succession.
• Hold your finger at the
extreme of the patient's reach
and move your finger to
different locations.
• Repeat L side.
• Dysmetria = inability to
perform point-to-point
movements due to over or
under projecting ones
fingers.
2. Rapid alternating movements
• Have patient pronate and supinate
the palms of his or her hands on
the thigh. Once the patient
understands this movement, tell
them to repeat it rapidly for 10
seconds.
• Dysdiadochokinesis = inability
to perform rapidly alternating
movements.
• Dysdiadochokinesia is usually
caused by MS or cerebellar
lesions.
– Patients with other movement
disorders (e.g. Parkinson's disease)
may have abnormal rapid alternating
movement testing secondary to
akinesia or rigidity, creating a false
impression of dysdiadochokinesia.
3. Heal knee shin
• With the patient supine (preferred)
instruct him to place the right heel
on left shin just below the knee;
then slide heal down the shin to
the foot and back. Repeat with L
foot,
• An inability to perform this motion
in a relatively rapid cadence is
abnormal.
• Abnormal test if there is loss of
motor strength, proprioception or a
cerebellar lesion.
10
6/5/2013
4. Get up and Go test
• Get up and Go Test
– Record the time it
takes a person to:
1. Rise from a hardbacked chair without
use of arms
2. Walk 10 feet
3. Turn
4. Return to chair and
sit down
• Normal if ≤ 10 sec
• Most frail elderly
adults can complete
in 11-20 sec
• ≥ 14 sec = increased
falls risk
• > 20 sec =
recommend further
eval
5. Hallway and tandem walk
Hallway walk
Observe the patient’s:
1. Arm swing
2. Heel distance
3. Leg stiffness
4. Lifting of feet
Tandem gait: Walk heel to toe
across the room.
Heel Walking: Sensitive way to
test for foot dorsiflexion
weakness
Toe Walking: best way to test
early foot plantar flexion
weakness.
6. Rhomberg Test
• Have patient stand
still with their heels
together. Ask the
patient to remain still
and close their eyes.
• If the patient loses
their balance, the test
is positive.
11
6/5/2013
7. Postural stability
Have patient stand
still with their heels
together. Ask the
patient to remain still
with EYES OPEN.
If the patient loses
their balance, the test
is positive.
8. Functional
Reach
• With feet shoulder width apart, raise arm 90
degrees to front and reach as far as possible
while maintaining stability
• Inability to reach 7” is predictive of falls
How can I prevent a fall in my home?
12
6/5/2013
Patient-specific strategies to reduce falls
• Environmental change
– Lighting in halls, night lights
– First floor setup
– Add stair rails (25% of falls occur on stairs)
• Hazard reduction
– remove rugs, use non-slip bathmats, safer
footwear,
Archives of Physical Medicine 2001;82(8):1050–6 Journal of Neurology,
Neurosurgery & Psychiatry. 2007;78:929–935.
How can I lower my risk of a fall and
a hip fracture?
• Get adequate calcium and vitamin D
– from food and/or from supplements.
• Assistive devices if needed.
• Get screened and treated for osteoporosis.
• No physical restraints
– Does not prevent falls
– Increases morbidity, mortality, length of stay
• Exercise!!
Archives of Physical Medicine 2001;82(8):1050–6 Journal of Neurology, Neurosurgery &
Psychiatry. 2007;78:929–935.
LSVT BIG therapy
13
6/5/2013
LSVT BIG™ in Parkinson’s
• Physical training program with large amplitude
body movement (Bigness).
• Improves amplitude (trunk rotation/gait) that
generalizes to improved speed (upper/lower
limbs), balance, and quality of life.
• LSVT BIG is delivered by PT or OT in four 1
hour sessions/week for four weeks.
• LSVT BIG trials report improvement in motor
movement months after the therapy was
completed.
•
B. G. Farley and G. F. Koshland, “Training BIG to move faster: the application of the speed-amplitude
relation as a rehabilitation strategy for people with Parkinson's disease,” Experimental Brain Research, vol.
167, no. 3, pp. 462–467, 2005.
Exercise improves
MOVEMENT!
Questions?
14
12:50 PM – 1:40 PM ‘Lewy Body Dementia Challenges and Management’ Karen A. Mullins, D.O. Physician Knoxville Neurology Clinic Knoxville, TN  Understand criteria for diagnosis of LBD  Understand challenges of treatment of LBD  Appropriately treat and manage LBD Notes: NOTES:
1:40 PM – 2:30 PM ‘Frontotemporal Dementia Update: Diagnosis and Management’ Monica K. Crane, MD Clinical Assistant Professor of Medicine, Department of Medicine University of Tennessee Medical Center‐Knoxville, Associate Director, Senior Assessment Clinic Director of Research, Cole Neuroscience Center Knoxville, TN  Understand the prevalence of FTD  Understand key symptoms associated with behavioral variant FTD  Review new genetic associations in FTD  Discuss treatment options for FTD Notes: Frontotemporal
dementia update:
Review and New Data
Monica K. Crane, MD
Associate Director
Director of Research
Cole Neuroscience Center
Assistant Professor, UTMCK
Frontotemporal dementia
(FTD) Overview
•
•
•
•
Background and clinical definition
Prevalence
FTD clinical subtypes
Neuropathology and genetics of
Frontotemporal lobe dementia (FTLD)
• Treatment updates
“Dementia That's Neither
Alzheimer's Nor Easy”
Normal
Alzheimer's
FTD
FDG-PET images of metabolic activity: healthy controls,
AD, and FTD. Scale red (high FDG uptake)-yellowgreen-blue (low FDG uptake).
Photo Credit: Dr. Janet Miller, Dr. Suzanna Lee, MGH/ Harvard, Radiology Rounds April 2006
1
FTD = a clinical neurodegenerative disease
affecting frontal & temporal lobes
http://www.uphs.upenn.edu/ftd
FTD International Research Criteria
1. Early behavioral disinhibition
2. Early apathy or loss of
motivation
3. Loss of emotional recognition,
sympathy, empathy
4. Perseverative, compulsive,
ritualistic behavior
5. Hyperorality/ dietary change
6. FTD neuropsych profile
7. Frontal and/or anterior
temporal atrophy on MRI or
other radiologic findings
8. Presence of a known mutation
Brain 2011: 134; 2456–2477
Mendez and Perryman, 2002;
Mendez et al., 2007;
Rascovsky et al., 2007a; Piguet
et al., 2009), the International
Behavioural Variant FTD
Criteria Consortium (FTDC)
revised guidelines for the
diagnosis of bvFTD.
FTD Prevalence
FTD: Alzheimer’s disease (AD) ratio is 1:1 in
those aged 45-65.
Ratnavalli et al. Neurology 2002.
FTD is more common that AD below age 60.
Knopman et al. Neurology 2004.
FTD spectrum comprises near 15% or more
of the total dementia cases.
Boxer AL, Miller BL. Alzheimer Dis Assoc Disord. 2005.
2
>50% of FTD subtypes misdiagnosed as
primary psychiatric disease
Woolley et al. J Clin Psychiatry. 201; 72(2): 126–133.
Figure. % of patients initially misdiagnosed prior to ND diagnosis
Frontotemporal dementia subtypes
• Behavioral variant (bvFTD)
• Semantic dementia (SD)
• Progressive nonfluent aphasia (PNFA)
• Progressive Supranuclear Palsy (PSP)
• Corticobasal degeneration (CBD)
• FTD with motor neuron disease (FTDMND)
Boxer AL, Miller BL. Clinical features of frontotemporal dementia. Alzheimer Dis Assoc
Disord. 2005;19 S1:S3-6
Behavioral Variant
FTD
3
Behavioral variant FTD (bvFTD)
• 60% of FTDs are bvFTD
– "Pick's disease” is term only reserved for a small subset of
autopsy confirmed FTLDs with Pick bodies.
B
Clinical genetic and pathological heterogeneity of frontotemporal dementia J Neurol Neurosurg
Psychiatry Seelaar et al; doi:10.1136/jnnp.2010.212225
Clinical Features of bv-FTD
• Gradual onset
• Impaired judgment and
planning
• Apathy
• Impaired insight
• Loss of empathy and
emotion recognition
• Disinhibition
• Abnormal eating
behavior
• Stereotypical or
ritualistic behavior
• Personal neglect
Is it AD or FTD?
• Patients with clinical bvFTD most likely to have
FTLD pathology if:
–
–
–
–
Early executive dysfunction (first problem)
Early personality changes
Apathy
Disinhibition
• Patients with clinical bvFTD most likely to have
AD pathology if:
– Early age of onset
– Neuropsychiatric features without personality changes
– Greater memory difficulties rather than executive dysfunction
Bathgate el al 2001; Diehl, Kurz 2002; Mourik et al 2004; Chow et al 2009;
Rascovsky et al 2011; Rieddijk et al 2009; Piquet et al 2009
4
Clinical Features FTD
AD
Behavior &
Social problems
Early disinhibition
Mild, increase with
disease severity
Motor signs
Common
Unusual
Mood
Apathy, irritability
Depression
Psychotic
features
Somatic, religious,
bizarre delusions
Delusions increase
with disease severity
Appetite/
hunger/diet
Overeating, weight
↑↑; carbohydrate
craving
Weight loss, anorexia;
misses meals
Muangpaisan W. Geriat Aging. 2007; McKhann MG et al. Arch Neurol 2001; Muangpaisan W et al.
Neuro J Thai 2003
IFTD:
Loss of Fear and
Disgust in bvFTD
• What is the
anatomy underlying
abnormal emotional
recognition in FTD?
• Previous fMRI
studies isolate 2
areas:
Fear = amygdala
Disgust = insula
Presented at iFTD 2012: Discrete Neural
Correlates for the Recognition of Basic
Emotions in FTD, Fiona Kumfor, Australia
Neuroimaging (fMRI) results by emotion
(response to Eckman 60 and Caricatures)
Presented at iFTD 2012: Discrete Neural Correlates for the Recognition of Basic Emotions in FTD, Fiona Kumfor, Australia
5
Neuroimaging (fMRI) results by emotion
Fear:
Right amygdala
and ACC
Disgust:
Left insula and
temporal pole
Anger:
Left superior temporal
sulcus
Sadness:
Subcallosal cingulate
Presented at iFTD 2012: Discrete Neural Correlates for the Recognition of Basic Emotions in FTD, Fiona Kumfor, Australia
Conclusion of emotions
and FTD
• Deficits in emotion recognition:
bvFTD
Semantic dementia
Progressive nonfluent aphasia
• Negative emotions more severely affected
than positive emotions in bvFTD.
• Deficits due to atrophy across multiple
discrete brain regions in the frontal and
temporal lobes.
Presented at iFTD 2012: Discrete Neural Correlates for the Recognition of
Basic Emotions in FTD, Fiona Kumfor, Australia
VIDEO example of bvFTD
Agnosia of facial
expression
6
Semantic dementia
and the aphasias
ANCIENT GREEK ἀΦΑΣΊΑ (ἄΦΑΤΟΣ, ἀ- +
ΦΗΜΊ) "SPEECHLESSNESS“
AN IMPAIRMENT OF LANGUAGE ABILITY
Semantic dementia (SD)
LEFT
predominance
•Language
features: fluent
speech but
loss of word
choice
RIGHT
predominance
• Profound deficits
in understanding
emotional
expression
• Difficulty
recognizing faces
• Loss of empathy
Clinical genetic and pathological heterogeneity of frontotemporal dementia J Neurol Neurosurg
Psychiatry Seelaar et al; doi:10.1136/jnnp.2010.212225
7
Semantic dementia and music
• How does SD affect recognition of famous
tunes and musical emotions?
• Aspects of music cognition relies on the anterior
temporal lobe (ATL) bilaterally.
• Findings contribute to our understanding of the
neurobiology of semantic memory.
Left: naming, verbal fluency, musical emotions
Right: famous people/ famous tunes, emotions
Patterson et al 2007. Where do you know what you know? The representation of semantic knowledge in the
human brain. Nature Review Neuroscience. 8(12), 976-987. Higher order aspects of music processing,
(recognition of famous tunes) affected in SD
Hsieh Brain 2011; Weinstein Arch Neurol 2011
Semantic dementia and music Memories, feelings of
music in Semantic Dementia , S Hsieh, Australia
• Emotional sounds produce greater
physiological responses as measured by
pupilometry in healthy controls
• Semantic dementia patients:
– Impaired subjective emotional ratings of normally
emotional sounds
– Loss of normal increased physiological responses
to emotive sounds
Neural basis of music knowledge: evidence from the dementias. Hsieh S, Hornberger M, Piguet O, Hodges
JR. Brain. 2011 Aug 21. PMID:21857031
Conclusion: Semantic
dementia and emotions
• Recognizing famous tunes and emotions in
music is impaired in SD and associated with
bilateral anterior temporal lobe (ATL) atrophy
• Music recruits areas in the brain known to be
important verbal semantics
• Processing aspects of music is part of verbal
knowledge
Patterson et al 2007. Where do you know what you know? The representation of semantic knowledge in the
human brain. Nature Rev Neuroscience. 8(12), 976-987.
8
Progressive Nonfluent
Aphasia (PNFA)
Progressive nonfluent
aphasia (PNFA)
• 20% of FTD cases
• Hesitant, effortful speech;
stutter or return of
childhood stutter
• Anomia, agrammatism,
sound errors (“gat” for “cat”)
• Eventually develop severe
movement disorder that
overlaps with PSP and
CBD
Marcel Ravel, (1875-1937)
French composer.
Ravel was in the early
stages of PNFA/FTD when
composing the orchestral
work Boléro (1928).
Progressive nonfluent aphasia (PNFA)
Case 1
Case 2
Coronal T1 weighted MRI:
Case 1: mild PNFA, atrophy of temporal lobe & frontal operculum.
Case 2: moderate PNFA, global atrophy with L-sided and
perisylvian predominance.
J Neurol Neurosurg Psychiatry Seelaar et al;
doi:10.1136/jnnp.2010.212225
9
Primary Progressive Aphasia (PPA) subtypes
Nonfluent agrammatic
PPA (PNFA)
Semantic variant PPA
Logopenic PPA
At least 1 must be present:
1.Agrammatism
2.Apraxia of speech
Both must be present
1.Impaired confrontation
naming
2.Impaired single-word
comprehension
Both must be present
1.Impaired single word
retrieval
2.Impaired repetition of
sentences and phrases
At least 2 of 3 features:
At least 3 of 4 features:
At least 3 of 4 features:
1.Impaired syntax
2.Spared comprehension of
single words
3.Spared object knowledge
1.Impaired object
knowledge
2. Dyslexia or dysgraphia
3. Spared repetition
4. Spared motor speech
1.Phonologic errors
2.Spared single word
comprehension and object
knowledge
3.Spared motor speech
4.Absence of agrammatism
Gorno-Tempini 2011; Physiological phenotyping of auditory emotion processing in canonical syndromes of FTLD, Phillip Fletcher, UK
Four types PPA speech therapy
Errorless Learning
• Passive
Errorful learning
• Active
– What is this?
– Where does it live?
– What is its name. Record
errors.
– TIGER. Please repeat.
– This is a round yellow juicy
citrus fruit
– It tastes sour.
– LEMON
• Active **BEST** in SD
–
–
–
–
–
–
Is this a fruit?
Is it round?
Is it juicy?
Is it red?
Is it an APPLE?
Please repeat.
• Passive
– This is not a giraffe, not a lion,
not a hippopotamus.
– It does not live in the water or
the dessert.
– What is it? Record errors.
– HORSE. Please repeat
Best Novel Therapy for
PPA
• Example of patient focused therapy for a piano teacher
• Front of card
• Back of card
– Piano.
– The instrument I play.
– It has white and black keys and a pedal.
– I teach (name) how to play piano.
Results: improved performance on treated words
with improved naming and comprehension.
(Jakel et al 2006)
10
•
•
•
•
•
•
Summary: Principles of
language treatment
Greater success with personally relevant items
(possible maintenance of gains with practice?)
Semantically or phonologically based treatment
successful.
Patient is involved in item selection.
More effective in patients with partially spared
semantics (SvPPA).
Incorporate retrained vocabulary into daily life.
Errorless active approach more effective than
traditional errorful approach for SvPPA.
Progressive
Supranuclear Palsy
Progressive supranuclear palsy (PSP)
KEY FEATURES
•Postural instability
•Falls
• Vertical supranuclear
opthalmoparesis
• Upward gaze paresis with
abnormal saccadic eye
movements
•Axial rigidity
•Cognitive decline
Dudley Moore
(1935-2002)
11
Corticobasal
degeneration
Corticobasal Degeneration (CBD) criteria
Core
• Cortical dysfunction
– Ideomotor apraxia
– “Alien limb”
– Sensory hemineglect
– Asymmetric myoclonus
– Non-fluent aphasia
• Extrapyramidal dysfunction
– Asymmetric rigidity lacking
and focal dystonia
Supportive Features
• Cognitive decline
with preserved
memory
• MRI: Asymmetric
atrophy of parietal &
frontal cortex
• FDG-PET: ↓ glucose
uptake in parietal,
frontal cortex, basal
ganglia & thalamus.
Neuropathology
12
Frontotemporal Lobar Degeneration (FTLD) =
FTD with histopathology
• Associated with biochemical abnormalities of
at least 3 proteins (tau, TDP-43, FUS)
– The term Pick’s disease can only be used for
FTLD with Pick bodies.
• Each protein is associated with different
pathologies & different genetic abnormalities.
• Wide range of clinical syndromes with
heterogeneous pathologies.
– Hypothesis: clinical and imaging markers that
may predict pathology
Tau immunopositive inclusions in FTLD
Pick inclusion bodies in FTLD Pick's disease. (A)
Round, circumscribed, amphophilic Pick bodies seen
on H and E-stained sections, but are more easily
visualized in (B) highlighted with silver stains (arrow).
Reynolds M R et al. J. Neurosci. 2006;26:10636-10645
TDP-43 and FUS
proteinopathies
TDP-43/FUS pathology:
numerous neuronal
cytoplasmic inclusions
(NCIs), with marked
reduction of nuclear TDP43 but also of nuclear
FUS staining (see
arrowheads) in the
dentate granule (DG)
cells of the hippocampus
Dormann D, Haass, C.
TDP-43 and FUS: a nuclear affair. Trend in
Neurosciences. 2001:34:339-348.
13
Can we link clinic FTD to pathology to
genetics?
Rohrer Biochimica et Biophysica Acta 1822 (2012) 325–332
Genetics
Human chromosomes and autosomal
dominant mutations
14
FTD inheritance
Genetic (40%)
10-15% have a single gene
mutation (autosomal dominant
inheritance)
Sporadic (60%)
First in the family to have FTD
(family not at risk)
http://www.theaftd.org/wpcontent/uploads/2009/02/Genetics-PieChartv3-2012-new.jpg
FTD is heterogenous:
Genes→pathology→ clinical syndrome
Seelar H, Rohrer LD, Pijnenburg YAL, Fox NC, can Swieten JC. Clinical, genetic and pathological
heterogeneity of frontotemporal dementia: A review. J Neurol Neurosurg Psychiatry 2010.
5 single gene mutations
– MAPT gene
• c17 makes tau
– GRN gene (PGRN)
• c17 makes progranulin
– VCP gene
• c9 codes for valosin-containing protein
– CHMP2B gene
• c3 makes multivesicular body protein 2B (chromatin
modifying protein 2B).
– TARDBP gene
• c1produces transactive response DNA-binding protein,
43-kDa molecular weight (TDP-43)
– C9ORF72, unknown function
15
MAPT gene mutation
• Tau maintains the structure of
neurons but mutation causes tau
to clump abnormally.
• MAPT mutation patients have
MORE hippocampal atrophy than
AD patients.
– Presymptomatic carriers
followed for over 17 years.
– Decline in episodic and
working memory.
Mahoney et al. IFTD 2012 Poster
Evolution of brain atrophy in
– Clinical syndrome of bvFTD 66
MAPT mutation carriers.
and FTDP-17.
GRN mutations
• 5-10% of all FTLD ,13-25% of familial FTLD
• Reduced progranulin production
(haploinsufficiency) and increased neuronal
inclusions made of TDP-43 and ubiquitin.
• GRN mutations are associated with bvFTD,
PNFA and movement disorders but generally
NOT MND/ ALS
C9ORF72
– GGGGCC repeats in the
open reading frame
– Mutation leads to TDP43 positive pathology.
– 20 -67% of familial ALS,
7% of sporadic ALS.
– 25% of familial FTD, 5%
of sporadic FTD.
(Majounie et al 2012)
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C9ORF72 origins
• Unknown physiologic function.
• People with mutant variant share a haplotype
containing dozens of single-nucleotide
polymorphisms in the region surrounding the
C9 gene, many scientists suspect a single
founder.
– C9ORF72 began expanding 6,300 years ago, but
said it could have been any time between 1600 and
16,500 years ago (Smith et al 2012, Ishiura et al 2012, Tsai et al 2012)
– Shared haplotype itself is somehow predisposed to
repeat expansions.
C9ORF72
• Symptomatic: Age 50, 9%; Age 85, 74% of carriers
• Clinical: ALS with bulbar symptoms, bvFTD, or
FTD with parkinsonism.
• Genetic anticipation
– Occurs in 1/4 of kindreds carrying the C9ORF72
variant.
– Children with symptom onset 7 years earlier than
parent, possibly from repeats growing in successive
generations.
Investigational
drugs and vitamin
therapies
17
Memantine
Study
Subjects
Design
Outcome
cognition
Outcome
behavior
Boxer et al
2009
21 bvFTD, 13
SD, 9 PNFA
n= 43
Open 26 wks
20mg
N/A
Transient
improvement in
NPI for bvFTD
Diehl-Schmid et 16 bvFTD
al 2008
Open 6 months
20mg
ADAS-cog
increased
No change in
NPI, FBI
Vercelletto et al
2011
Phase II 52 wk
random DB
placebo
No difference
No difference
Phase IV 26wk
random,
multicenter DB
placebo
controlled
In progress
In progress
49 bvFTD (23
treatment, 26
placebo)
NCT0054947
Antidepressants
Study
Subjects
Design
Outcome
cognition
Deakin et
al 2004
10 bvFTD
6 wks paroxetine
40mg
Worse
No difference NPI
paired learning, or FBI
reversal
learning, pattern
recognition
16 bvFTD
14 months of
paroxetine 20mg
versus piracetam
1200mg
Moretti et
al 2003
8 with paroxetine,
8 with piracetam
Lebert et
al 2004
26 bvFTD
Trazadone
Random placebo
control 12wk
Swartz et
al 1997
11 bvFTD
3 months open
label: fluoxetine
paroxetine,
sertraline
Outcome
behavior
Paroxetine
improved
No effect
Improved NPI
Improved
disinhibition,
depression,
compulsions, less
carb cravings
Antipsychotics
• Antipsychotics have a statistically
significant benefit for behaviors in FTD.
(Curtis and Resch 2000, Fellgiebel 2007)
• Open label study with olanzapine in 17
bvFTD patients over 24 months, showed
improved behavioral symptoms. (Moretti et al 2003)
18
Clinical studies in progress
• DB placebo controlled randomised parallel
group, 12 month safety and efficacy trial of
TRx0237 (tau aggregation inhibitor) in
bvFTD (NCT01626378).
• Phase I dose finding study of intranasal
oxytocin in bvFTD (NCT01386333).
Oxytocin mediates social behavior.
• Effects of tolcapone on FTD
(NCT00604951). Tolcapone increases
dopamine.
Potential treatments (Vossel
and Miller 2008)
Protein
Target
Drugs
Disease stage
MAPT
Inhibit tau kinases
Lithium, valproic acid
preclinical
Inhibit/reverse tau
aggregation
Anthraquinones,
drug discovry,
phenylthiazolylhydrazides, Tau some phase III
Rx
trials
Reduce tau expression
Several compounds
preclinical
Block tau cleavage
Calpain inhibitor A-705253
preclinical
immunosuppression
FK-506
preclinical
Alter chaperone system
to enhance tau
degradation
Hsp90
preclinical
Interfere with splicing to
normalize 3R & 4R ratio
Splicing regulators
preclinical
Stabilize microtubules
Paclitaxel
preclinical
Potential treatments
Protein
Target
Progranulin
Ribosomal readthrough of PTC124
premature termination of
codons
preclinical
Regulate progranulin
levels
Screening of
compounds
preclinical
Block proteolytic
cleavage
Elastase inhibition
preclinical
Immune therapy, block
cleavage
Screening of
compounds
preclinical
TDP-43
Drugs
Disease stage
19
FTD Non-rx management
•
•
•
•
•
•
Education
Med-alert bracelet
Occupational and financial advice
Genetic counseling if relevant
Specific driving advice
Environmental modification
– Visual, hearing, mobility aids, continence aids
• Behavioral intervention (communication aids, routines,
reassurance)
• Caregiver support
The central problem in all neurodegenerative
disease…
How do protein alterations (an
autopsy finding) or a manifest is an
actual patient in your clinic?
Can we predict pathology from the
clinical presentation (clinical
Questions?
20
2:45 PM – 3:35 PM Parkinson’s Disease and Premotor Symptoms Michelle L. Brewer, M.D. Knoxville Neurology Clinic Knoxville, TN Notes: NOTES:
3:35 PM – 4:20 PM Speaker Panel John Dougherty, Jr., M.D., Medical Director, Cole Neuroscience Center, University of Tennessee Medical Center, Knoxville, TN Monica K Crane, M.D., Clinical Assistant Professor of Medicine, Department of Medicine, University of Tennessee Medical Center‐Knoxville; Associate Director, Senior Assessment Clinic; Director of Research, Cole Neuroscience Center, Knoxville, TN Nancy Britcher, L.C.S.W., Knoxville, TN  Open discussion Notes: NOTES:
2013 Symposium Exhibitors Accera Pharmaceuticals Alzheimer’s Tennessee Amedisys Home Health Blount Memorial Hospital CADES – Concord Adult Day Enrichment Services Choices in Senior Care Clarity Pointe The Courtyards Senior Living Covenant Senior Health East TN Personal Care Gentiva Home Health Home Helpers Homewatch CareGivers Howard Circle of Friends Adult Day Program Kay Senior Care Center King College Nursing Program Lifeguard Ambulance Service Manorhouse Morning Pointe of Lenoir City MountainBrook Village National Library of Medicine Novartis Personal Care Choices Raintree Senior Health and Care Senior Solutions Silver Angels Smoky Mountain Hospice United Healthcare The University of Tennessee Medical Center, Brain and Spine Institute, Cole Neuroscience Center West Hills Health and Rehab Williamsburg Villas