alz dd march 2014
TRANSCRIPT
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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 amyloidprecursor 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
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.orgStephanie Rohlfs-Young, MSW
Outreach Director
St. Louis Chapter
Kendall Brune, PhD, FACHCA