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Alzheimer’s & Dementia:Challenges for the DD Community

St. Louis Chapter: Dr. Kendall Brune, FACHCA

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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

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.orgStephanie Rohlfs-Young, MSW

Outreach Director

St. Louis Chapter

srohlfs@alz.org

Kendall Brune, PhD, FACHCA

kbrune2339@gmail.com