Adapting to Alzheimer’s 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 Community Living grant ► Leverage expertise among partner organizations to educate underserved communities ► Prevalence of dementia in adults with IDD on Alzheimer’s disease and related dementias (ADRD) ► Identifying dementia in persons with IDD ► Chinese Community ► Persons Living Alone in Public Housing ► Helping adults with IDD & Dementia ► Individuals with Intellectual and Developmental Disabilities ► Resources Supported through San Francisco Department of Aging and Adults Services (DAAS)
Partners for the IDD Population Currently 650,000 IDD over age 60 in U.S. ► The Arc San Francisco - expansion of target audience ► Alzheimer’s Association - trainers ► UCSF - evaluations and assessments ► DAAS - monitoring and reporting 1.3 Million in next 12 years Source: CDC The Alzheimer’s Association’s Role The Arc’s Role in the Partnership in the Partnership ► Connecting to other IDD organizations about need to increase awareness ► To inform the community of IDD vendors of the statistics around of Alzheimer’s and related dementias in IDD population Alzheimer’s disease and related dementias, particularly the prevalence among adults with Down syndrome ► To be open to learning and receiving cross disability training as it relates to Alzheimer’s disease and related dementias ► To deliver training to professionals and caregivers in the IDD community on recognizing signs of dementia, needed environmental modifications ► Educating on the nuances of navigating generic supports in IDD and support strategies community for better outcomes ► Providing education & advocacy to existing resources about how people with IDD and their caregivers are best served
Drawing upon Intersection Recalibration of Approach ► The Whole is Greater than the Sum of its Parts ► Part of the education process for both parties was understanding the existing model did not directly translate to the IDD community ► We believe that the best possible outcome is where there is an intersection of knowledge, expertise and a holistic approach to services ► The Arc’s responsibility was to propose a different pathway to ► IDD community is in the best position to serve someone with Alzheimer’s, but reaching its community by expanding who we define as a caregiver needs to be informed by other fields and professionals ► Both partners believe in the ability to age in place with appropriate supports 1 Identified Disparities The Cart Before the Horse General Population IDD Community ► Cannot reach traditional family caregivers if IDD community is ► Live-in caregivers ► IDD wrap-around services not able to identify ADRD and lacks awareness of resources ► Traditional family relationships ► Surrogate Families ► Professionals are the gateway to families/individuals in need of supports ► Transitioning away from lifetime of ► Loss of independence encouraging independence ► Paid caregivers are supporting older adults - many of whom have lived in their board and care homes for decades ► New caregivers ► Lifetime caregivers ► Outcome: Need to adapt the current support model in order to ► Service Model - You come to us ► Service Model - We go to you meet the needs of the IDD community ► Trainings - Small-scale at ► Trainings - Large groups Board & Care homes
Who is at risk for Alzheimer’s disease? Alzheimer’s and Dementia in the IDD population What you need to know Significant change in at least What is ► Most common form of Alzheimer’s disease? dementia What is dementia? two categories: ► Progressive ► Memory ► Language ► Degenerative ► Irreversible ► Executive Function ► Perception ► Behavior
10 Warning Signs of Alzheimer’s Disease Know the Signs Alzheimer’s disease in adults with IDD General Populations IDD Community 1. Memory loss that disrupts daily life 1. New memory loss that disrupts daily life ▶ Late-onset seizure ▶ Resistance 2. Challenges in planning or problem solving 2. New problems in planning and problem solving disorders ▶ Irritability and Agitation 3. Difficulty completing familiar tasks at home or work 3. Difficulties completing familiar tasks ▶ Loss of motivation 4. Confusion with time and place 4. New confusion with time and place ▶ Mood Changes 5. Trouble understanding visual images and spatial relationships 5. New trouble understanding visual images and spatial relationships ▶ Sleep disturbance ▶ Delusion and Hallucinations 6. Misplacing things and losing the ability to retrace steps 6. New challenges with misplacing things and decline in ability to retrace steps ▶ Wandering 7. Decreased or poor judgement 7. New decline in judgement ▶ Agitation 8. Withdrawal from work or social activities 8. Withdrawal from previous patterns of work or social activities ▶ Gait & Balance Troubles 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 Be Aware of Notice the Impact of Environmental Factors Diagnostic Overshadowing ▶ Psychiatric disorder ▶ Withdrawal ▶ Sensory Impairment ▶ Mood changes ▶ Musculoskeletal Problems ▶ Medical Conditions: ▶ Personality changes ◇ Hypothyroidism ◇ Sleep Apnea ◇ Heart problems ◇ Chest infection ◇ Constipation
The Arc San Francisco Evaluations, Screenings, Baseline Services and Supports for IDD & Dementia Formal Evaluation ► Call-in Support Group Screening Tools ► Alzheimer’s Care Academy ▶ National Task Group - Early Detection Screen for Dementia ► Adapting to Alzheimer’s Dementia training ▶ Adaptive Behavior Dementia Questionnaire Gather Baseline Data & Not e Changes Over Time ► Dementia Evaluations ▶ Writing samples ► Baseline Evaluations ▶ Educational assessments ▶ Videos How to Support Someone with Resources Dementia National Task Group - https://aadmd.org/ntg Adapt... Alzheimer’s Association 1-800-272-3900 or alz.org ► Your routine ► Their routine Your local Area Agency on Aging ► Your communication style Health Care Providers/Hospitals ► The environment The Arc San Francisco
Where to Learn More 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
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