Understanding Alzheimer's Disease and its prevalence within the adult population with developmental disability.

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Alzheimer’s & Dementia:
Challenges for the DD Community
St. Louis Chapter

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Research Interests
• Exploring the unique age-related learning
needs of older adults with DD.
– How do we help older adults with DD
maintain their independence and successfully
age in place?
• Collaboration with the Association on
Aging with Developmental Disabilities
(AADD)

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Alzheimer’s Epidemic
• Over 5 million Americans with Alzheimer’s and another
person is added every 68 seconds
• 6th leading cause of death
• 1 in 3 seniors will die with AD or another dementia
• Nearly 800,000 people with dementia live alone
• Long-distance caregiving costs twice as much
as caregivers who live in the same town
• 70% of people with Alzheimer’s live at home with
help from family and friends

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Alzheimer’s Epidemic
• AD is not just a Statistic for me~! It is my Mother~!
• ….and potentially my Daughter~!

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What is
Alzheimer’s?
What is
dementia?

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Age-Related Changes Problematic Changes
Making a bad decision once in a
while
Decreased or poor judgment
Missing an occasional monthly
payment
Difficulty completing familiar
tasks
Forgetting which day it is and
remembering later
Confusion with time, place, or
season
Sometimes forgetting which
word to use
New problems in speaking,
writing, or calculating
Losing things from time to time Misplacing things and being
unable to retrace steps

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 Memory changes that disrupt daily life
 Challenges in planning
or solving problems
 Difficulty completing
familiar tasks
 Confusion with time,
place or names
 Trouble with visual
images and spatial
relationships
Early Warning Signs

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 New problems with words
in speaking or writing
 Misplacing things
and losing the ability
to retrace steps
 Decreased or
poor judgment
 Withdrawal from
work or social activities
 Changes in mood and personality
Early Warning Signs

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Reversible Dementias
 Infections
 Depression
 Tumors
 Subdural hematoma
 Normal pressure hydrocephalus
 Hypothyroidism (low thyroid levels)
 Hypoglycemia (low blood sugar)
 Medication interactions
 Nutritional issues(vitamin B12 deficiency )
 Chronic drug or alcohol abuse

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Alzheimer’s disease
 Most common form of dementia
 Neurological disorder caused by
amyloid plaques
& tangles
 Progressive disease
 Fatal with currently
no cure

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Vascular Dementia
 2nd most common dementia
 Brain damage from
cardiovascular or
cerebrovascular problems
 Sudden onset after stroke
 May result from genetic
diseases
 May or may not progress
 Typical stair step or sudden
progression

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Mixed Dementia
 Evidence of cardiovascular disease
and slowly progressing dementia
 Coexistence of Alzheimer’s and
vascular dementia is most common
 Can also see Parkinson’s and
Alzheimer’s commonly
 Medications can more commonly
slow vascular disease

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 Memory
 Language
 Thought
 Navigation
 Behavior
 Personality / mood
 Planning &
organizing
Common Dementia Symptoms
Healthy vs. Alzheimer’s

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Stages of Dementia
Early-Stage
• Occasional memory lapses
• Trouble with complex tasks
• Subdued/withdrawn
• No incontinence
Mid-Stage
• Key pieces of info
• Dressing for weather
• Can eat and toilet
• More likely to wander
• Some incontinence
Late-Stage
• Need help with all self-care
tasks
• Forget names, but not
faces
• Likely incontinent
Active Dying
• Bedbound
• Rigid muscles and general incontinence
• Loss of speech

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Major Risk Factors
 Age
 Gender
 Head trauma
 Family history
 Genetic variant
 Other conditions (heart
disease, diabetes, high
cholesterol)
 Down syndrome

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Down
Syndrome is
due to extra
#21
chromosome
and amyloid
precursor
protein gene is
on #21

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Epidemiology in DD Population
AD rate for ID/DD similar to general pop but
those with Down Syndrome (DS) “age” earlier
[13% general pop have AD @ 65+; 4% 65]
 Ages 40-49; 10 – 25% of DS develop AD
 Ages 50-59; 20 – 50% of DS develop AD
 Age 60+; 60 - 75% of DS develop AD

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Epidemiology in DD Population
Wait, Now we are getting PERSONAL~!
This is my Baby we are talking about~!
In 2001 our Family took a trip to DC to plea for
more funding for AD research.
Great response from Politicians,
Paige stole their hearts,
Paige was a Star…and her brother too~!
We were engaged in Public Policy,
Our Family was engaged in Building Awareness.

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 Doctors can diagnosis
Alzheimer’s disease with
accuracy
• Primary care physician
• Geriatrician
• Neurologist
• Psychiatrist
 Medicare Annual
Wellness Exam pays for
cognitive screening
Early Detection

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 Rule out other pathology
 Biomarkers
 Family (Staff) interview
 Neuropsychological tests
Detection in General Population

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 1st Rule out (Physical Tests)
 Standardized Paper Tests
 Start at 40 in DS; others with DD at 50
 Repeat use same test
 Standardized tests (Caregiver reports)
 Dementia Scale for Down Syndrome (DSDS)
 Dementia Questionnaire for Mentally Retarded
Persons (DQMRP).
 Assessment for Adults with DD (AADS)
 Alzheimer Functional Assessment Tool (AFAT)
Detection in DD Population

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Caregiver Needs
 Disease carries stigma
 Many caregivers deny actual
level of impairment & risk
 May feel shame that they can’t
control the situation
 Caregiver & financial stress
are major factors to consider

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Education is Key
 Caregivers may be experts
about loved one
 Explain disease & risks
 Make information clear and
easily understood
 Encourage them to be
proactive
 Refer to the Alzheimer’s
Association for support

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Information
and Referral
Helpline
Website
Resource
Library
Family
Support
Care
Consultations
Support
Groups
Early Stage
Programs
Respite Care
Assistance
MedicAlert®
+Safe Return
Education
and Outreach
Family
Education
Community
Education
Professional
Education
Public Policy
State
Advocacy
Federal
Advocacy
Research
Trial Match
Research
Funding
Research
Education
Alzheimer’s Association

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24/7 Helpline
 800-272-3900
 Master’s-level clinician
available
 Serves over 250,000
callers each year
 170 languages and
dialects
 Resource for families and
professionals

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 Offered by professional
social worker or
gerontologist
 Assess needs
 Assist with planning &
problem solving
 Suggest safety plans
 Connect to resources
 In person or phone
 Suggested donation $75
Care Consultation

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 Provide family with $500
annually to hire services or
pay for products
 Consumer choice model;
can use formal services or
family support
 Home-delivered products
offered at discount
 Can combine with other
programs
 Use for short-term admission
Respite Support (Missouri)

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Safety Services
 Assist with safety plans
 Counsel on driving & support
driving assessments
 Offer MedicAlert + Safe
Return program
 Work with law enforcement
& media

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Early Stage Programs
 Project Esteem: multi-
week support program
 Let’s Talk: peer-to-peer
phone support
 Socialization &
enrichment programs:
Cardinals
Reminiscence League

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www.alz.org/stl

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Your Partner in Support
24-hour Helpline
800.272.3900
www.alz.org
Stephanie Rohlfs-Young, MSW
Outreach Director
St. Louis Chapter
srohlfs@alz.org
Kendall Brune, PhD, FACHCA
kbrune2339@gmail.com