Adapting to Alzheimers Understanding dementia in individuals with - - PowerPoint PPT Presentation

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Adapting to Alzheimers Understanding dementia in individuals with - - PowerPoint PPT Presentation

Adapting to Alzheimers Understanding dementia in individuals with intellectual and developmental disabilities We have no disclosures Joanne Rolle, MPA Jennifer Dresen, MSW/MPH Learning Objectives Project Background Administration on


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Adapting to Alzheimer’s

Understanding dementia in individuals with intellectual and developmental disabilities Joanne Rolle, MPA Jennifer Dresen, MSW/MPH

We have no disclosures

Learning Objectives

► Leverage expertise among partner organizations ► Prevalence of dementia in adults with IDD ► Identifying dementia in persons with IDD ► Helping adults with IDD & Dementia ► Resources

Project Background

Administration on Community Living grant to educate underserved communities

  • n Alzheimer’s disease and related dementias (ADRD)

► Chinese Community ► Persons Living Alone in Public Housing ► Individuals with Intellectual and Developmental Disabilities

Supported through San Francisco Department of Aging and Adults Services (DAAS)

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Currently 650,000 IDD over age 60 in U.S. 1.3 Million in next 12 years

Source: CDC ► The Arc San Francisco - expansion of target audience ► Alzheimer’s Association - trainers ► UCSF - evaluations and assessments ► DAAS - monitoring and reporting

Partners for the IDD Population

► Connecting to other IDD organizations about need to increase awareness

  • f Alzheimer’s and related dementias in IDD population

► To be open to learning and receiving cross disability training as it relates

to Alzheimer’s disease and related dementias

► Educating on the nuances of navigating generic supports in IDD

community for better outcomes

► Providing education & advocacy to existing resources about how people

with IDD and their caregivers are best served

The Arc’s Role in the Partnership

► To inform the community of IDD vendors of the statistics around

Alzheimer’s disease and related dementias, particularly the prevalence among adults with Down syndrome

► To deliver training to professionals and caregivers in the IDD community

  • n recognizing signs of dementia, needed environmental modifications

and support strategies

The Alzheimer’s Association’s Role in the Partnership

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► The Whole is Greater than the Sum of its Parts ► We believe that the best possible outcome is where there is an intersection

  • f knowledge, expertise and a holistic approach to services

► IDD community is in the best position to serve someone with Alzheimer’s, but

needs to be informed by other fields and professionals

► Both partners believe in the ability to age in place with appropriate supports

Drawing upon Intersection

► Part of the education process for both parties was understanding the

existing model did not directly translate to the IDD community

► The Arc’s responsibility was to propose a different pathway to

reaching its community by expanding who we define as a caregiver

Recalibration of Approach Identified Disparities

General Population IDD Community

► Live-in caregivers ► IDD wrap-around services ► Traditional family relationships ► Surrogate Families ► Loss of independence ► Transitioning away from lifetime of

encouraging independence

► New caregivers ► Lifetime caregivers ► Service Model - You come to us ► Service Model - We go to you ► Trainings - Large groups ► Trainings - Small-scale at

Board & Care homes

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The Cart Before the Horse

► Cannot reach traditional family caregivers if IDD community is

not able to identify ADRD and lacks awareness of resources

► Professionals are the gateway to families/individuals in need of

supports

► Paid caregivers are supporting older adults - many of whom have

lived in their board and care homes for decades

► Outcome: Need to adapt the current support model in order to

meet the needs of the IDD community

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Alzheimer’s and Dementia in the IDD population

What you need to know

Who is at risk for Alzheimer’s disease?

What is dementia?

Significant change in at least two categories:

► Memory ► Language ► Executive Function ► Perception ► Behavior

What is Alzheimer’s disease?

► Most common form of

dementia

► Progressive ► Degenerative ► Irreversible

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10 Warning Signs of Alzheimer’s Disease

General Populations IDD Community

  • 1. Memory loss that disrupts daily life
  • 1. New memory loss that disrupts daily life
  • 2. Challenges in planning or problem solving
  • 2. New problems in planning and problem solving
  • 3. Difficulty completing familiar tasks at home or work
  • 3. Difficulties completing familiar tasks
  • 4. Confusion with time and place
  • 4. New confusion with time and place
  • 5. Trouble understanding visual images and spatial relationships
  • 5. New trouble understanding visual images and spatial relationships
  • 6. Misplacing things and losing the ability to retrace steps
  • 6. New challenges with misplacing things and decline in ability to

retrace steps

  • 7. Decreased or poor judgement
  • 7. New decline in judgement
  • 8. Withdrawal from work or social activities
  • 8. Withdrawal from previous patterns of work or social activities
  • 9. Changes in mood and personality
  • 9. Changes in mood and personality
  • 10. New problems with words in speaking or writing
  • 10. New problems with words in speaking or writing when compared to

individuals previous level

Know the Signs

Alzheimer’s disease in adults with IDD

▶Late-onset seizure

disorders

▶Loss of motivation ▶Sleep disturbance ▶Wandering ▶Agitation ▶Gait & Balance Troubles ▶Resistance ▶Irritability and Agitation ▶Mood Changes ▶Delusion and Hallucinations

Be Aware of

Diagnostic Overshadowing

▶Psychiatric disorder ▶Sensory Impairment ▶Musculoskeletal Problems ▶Medical Conditions:

◇ Hypothyroidism ◇ Sleep Apnea ◇ Heart problems ◇ Chest infection ◇ Constipation

Notice the Impact of

Environmental Factors

▶ Withdrawal ▶ Mood changes ▶ Personality changes

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Evaluations, Screenings, Baseline

Formal Evaluation Screening Tools

▶National Task Group - Early Detection Screen for Dementia ▶Adaptive Behavior Dementia Questionnaire

Gather Baseline Data & Note Changes Over Time

▶Writing samples ▶Educational assessments ▶Videos

►Call-in Support Group ►Alzheimer’s Care Academy ►Adapting to Alzheimer’s

Dementia training

►Dementia Evaluations ►Baseline Evaluations

The Arc San Francisco

Services and Supports for IDD & Dementia

How to Support Someone with Dementia Adapt...

► Your routine ► Their routine ► Your communication style ► The environment

Resources

National Task Group - https://aadmd.org/ntg Alzheimer’s Association 1-800-272-3900 or alz.org Your local Area Agency on Aging Health Care Providers/Hospitals The Arc San Francisco

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National Task Group on Intellectual Disabilities and Dementia Practices https://aadmd.org/ntg National Task Group Early Detection Screen for Dementia https://aadmd.org/sites/default/files/NTG-EDSD-Final.pdf Down’s Syndrome Scotland: Living with Dementia: A families and carers guide https://www.dsscotland.org.uk/wordpress/wp-content/uploads/2016/02/Living-with-Dementia- final-05.08.15.pdf National Down Syndrome Society: Aging and Down Syndrome Guide http://www.ndss.org/wp-content/uploads/2017/11/Aging-and-Down-Syndrome.pdf Alzheimer’s Australia: Down Syndrome and Alzheimer’s disease guide https://www.downsyndrome.org.au/documents/resources/health/Down_syndrome_and_Alzheime rs_disease.pdf

Where to Learn More