with people with intellectual and developmental disabilities and dementia Philip McCallion PhD Center for Excellence in Aging amp Community Wellness wwwceacworg pmccallionalbanyedu ID: 1045896
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1. Promising practices in working with people with intellectual and developmental disabilities and dementiaPhilip McCallion, Ph.D.Center for Excellence in Aging & Community Wellnesswww.ceacw.org pmccallion@albany.edu
2. Some definitionsIntellectual Disability: a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18 years. (AAIDD)Developmental Disability: a group of conditions due to an impairment in physical, learning, language, or behavior areas. About one in six children in the U.S. have one or more developmental disabilities or other developmental delays. (CDC)Down syndrome: a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.
3. Some Demographics of Persons with Intellectual/Developmental Disabilities(Burke & Fujiura, 2013; Fujiura, 2012; Parish, et al., 2014)21% of household heads aged 60+(equivalent to caring for approx. 75% of those in residential care)Family caregiver support receives approx. 7% of Medicaid resourcesEstimated 250,700 people with Down syndrome (8.27 per 10,000) (Presson et al., 2013)
4. Estimated Age Prevalence of Dementia: People with Down syndrome, People with Intellectual Disability (without Down syndrome) and U.S. General PopulationLai, F. Williams, R. 1989 Archives of Neurology; Cooper, SA. 1997 JIDRDown SyndromeNon DS IDAlzheimer's Association Alzheimer's Disease Facts and Figures, 2014
5. Barriers to Good Dementia Care in the CommunityPerson with IDDNormal effects of agingNegative attitudes about people with disabilitiesLifestyleeffectsLimited access to quality health careLack of knowledge about aging for people with IDDDecreased Quality of Life & Increased DeclineInadequate fundingfor health careEffects of the disability and its treatment
6. Assessment IssuesLack of sensitivity in traditional dementia assessmentsPhysical problems often overshadow Atypical presentation and delayed response to life events increase complexity of assessmentNeed for comparison to own baseline (persons with DS age 35; persons with other IDD age 50)Late onset epilepsy and depressionCombination of performance (example Test for Severe Impairment) and informant measures (example Dementia in Persons with Intellectual Disability)No agreed short screening measure
7. Programming Models - ConcernsPhilosophy of skills acquisitionDesire for community livingAssumption of day program attendanceStaff as supports not primary carersNot hired for this kind of work
8. Programming Models – How they are changingPhilosophy of community maintenanceStaff training/retrainingContinuum of careContinuum of resources/supportsMenus of services rather than fixed programs
9. Emerging Models of Service ProvisionProviding sound and responsive community care an increasing challenge.Referral out to non-specialized long care settingsAging in place modelSpecial needs/special unitsCreating a continuum of servicesDevelopment of dementia specific day programmes
10. Referral Out . . .DynamicsThreshold effectTipping pointFinancialPolicyProgrammatic
11. Supporting Aging in Place - Service commitment to continued care- Address Staff training needs- Identify low cost environmental modifications- Consider how to support other consumers- Develop a person by person care management plan- Adapt supports at each stage of dementiaGiven changing demographics support of aging in place critical.
12. Special Needs: Special UnitsSpecialized staff and specialized environment best provide for long term careGeared toward care in later stages of Alzheimer’s disease (or other dementias)“Just like any other home”/ equipped to meet increased needs and deliberately located close to other services/campus setting
13. Creating a Continuum of Services: A return to villages?Multi/interdisciplinary team – available or in transit?Specialized services and health supports – dedicated or as needed?Existing community settings, concentrated neighborhoods or campus settings?Living in the community or enjoying community living?
14. Day Programming - ApproachesRedesign for aging yearsDifferent staffingTraining for staffJoint activity development by ID and AD staffHealth support component
15. End of Life ConcernsPeople with IDD at end stage disease no less in need of comfort measures nor of discussion of their wishes prior to advancement of diseaseUnderstanding requirements for substitute decision-makingCollaboration with IDD services providers rather than their replacement by hospice/palliative care providersTraining for hospice/palliative care providers on late stage disease, communication best practices, and life stories for people with IDDSupport for families, peers with IDD and staff caregivers
16. Collaboration with AAAs and Alzheimer’s ProvidersAAAs - training for ADRC staff - shared dementia focused day and respite programs - joint responses when person with IDD and family caregiver both have symptoms Chapters of the Alzheimer’s Association - training/materials - caregiver support groupsMemory Clinics - Specialist IDD and dementia clinics (contact State Center for Excellence and/or State Developmental Disability Planning Council) - Some general population clinics have an interest/consulting relationship on IDD issuesTelehealth - newly funded (Special Hope Foundation) project to develop best practices for telehealth support from IDD and dementia experts
17. Challenges in Collaboration to be AddressedShared LanguageWho pays for what?Mechanisms/agreements/MOUsEarlier intervention
18. Guidelines for Community Care and Supports for People with Intellectual Disabilities Affected by DementiaGuidelines suggest actions to optimize community-based care and supports.- Reflect the progressive nature of prevalent dementias using a staging model... … from a pre-diagnosis stage – when early recognition of symptoms associated with cognitive decline are recognized -- through to early, mid, and late stages of dementia- Characterize the expected changes in behavior and functionUse: to help providers organize and deliver quality care and supports to people with ID affected by dementiahttp://aadmd.org/ntg/practiceguidelines
19. NTG Education & Training Curriculum on Dementia and IDDNew national curriculum currently in developmentCurriculum will have several levels • Level 3: Core curriculum for staff employed in programs directly serving adults with ID and dementia - extensive content on in-depth knowledge of dementia and dementia capable care• Level 2: Content for staff employed and participating in a continuing education program - content on basic knowledge of aging and dementia• Level 1: Content for new hires participating in orientation and in-service training - content on basics of aging, touching on awareness of dementia symptoms; limited time
20. ID & Dementia Training CD-roms Available from . . . Center for Excellence in Aging & Community Wellness University at Albany Albany, NY 12222 qtac@albany.edu