2. 2
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)
3. 3
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
4. 4
Alzheimer’s Epidemic
• AD is not just a Statistic for me~! It is my Mother~!
• ….and potentially my Daughter~!
6. 6
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
7. 7
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
8. 8
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
11. 11
Alzheimer’s disease
Most common form of dementia
Neurological disorder caused by
amyloid plaques
& tangles
Progressive disease
Fatal with currently
no cure
12. 12
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
13. 13
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
14. 14
Memory
Language
Thought
Navigation
Behavior
Personality / mood
Planning &
organizing
Common Dementia Symptoms
Healthy vs. Alzheimer’s
15. 15
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
16. 16
Major Risk Factors
Age
Gender
Head trauma
Family history
Genetic variant
Other conditions (heart
disease, diabetes, high
cholesterol)
Down syndrome
18. 18
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
19. 19
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.
20. 20
Doctors can diagnosis
Alzheimer’s disease with
accuracy
• Primary care physician
• Geriatrician
• Neurologist
• Psychiatrist
Medicare Annual
Wellness Exam pays for
cognitive screening
Early Detection
21. 21
Rule out other pathology
Biomarkers
Family (Staff) interview
Neuropsychological tests
Detection in General Population
22. 22
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
24. 24
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
25. 25
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
27. 27
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
28. 28
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
29. 29
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)
30. 30
Safety Services
Assist with safety plans
Counsel on driving & support
driving assessments
Offer MedicAlert + Safe
Return program
Work with law enforcement
& media
31. 31
Early Stage Programs
Project Esteem: multi-
week support program
Let’s Talk: peer-to-peer
phone support
Socialization &
enrichment programs:
Cardinals
Reminiscence League
33. 33
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