Center for Excellence in Aging & Community Wellness Promising practices in working with people with intellectual and developmental disabilities and dementia Philip McCallion, Ph.D. Center for Excellence in Aging & Community Wellness www.ceacw.org pmccallion@albany.edu

Some definitions Intellectual 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.

Some Demographics of Persons with Intellectual/Developmental Disabilities 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 resources Estimated 250,700 people with Down syndrome (8.27 per 10,000) (Presson et al., 2013) (Burke & Fujiura, 2013; Fujiura, 2012; Parish, et al., 2014)

Estimated Age Prevalence of Dementia: People with Down syndrome, People with Intellectual Disability (without Down syndrome) and U.S. General Population Down Syndrome Non DS ID During the 6th decade of life over half the population with Down syndrome will develop clinically identifiable dementia [Lai, 1989 #520]. The average age of clinical diagnosis of Alzheimer’s disease is around 50 years [Holland, 1998 #533]. The early and high rates of Alzheimer’s disease is not due to people with DS having an intellectual disability. Comparison with Cooper’s [Cooper, 1997 #325] study of psychiatric disorder in elderly people with intellectual disability shows the development of dementia in people with intellectual disability happens 2-3 decades later than in people with DS [Lai, 1989 #520; Cooper, 1997 #325]. Lai, F. Williams, R. 1989 Archives of Neurology; Cooper, SA. 1997 JIDR Alzheimer's Association Alzheimer's Disease Facts and Figures, 2014

Barriers to Good Dementia Care in the Community Effects of the disability and its treatment Normal effects of aging Limited access to quality health care Lack of knowledge about aging for people with IDD Inadequate funding for health care Person with IDD Lifestyle effects Negative attitudes about people with disabilities Decreased Quality of Life & Increased Decline

Assessment Issues Lack of sensitivity in traditional dementia assessments Physical problems often overshadow Atypical presentation and delayed response to life events increase complexity of assessment Need for comparison to own baseline (persons with DS age 35; persons with other IDD age 50) Late onset epilepsy and depression Combination of performance (example Test for Severe Impairment) and informant measures (example Dementia in Persons with Intellectual Disability) No agreed short screening measure

Programming Models - Concerns Philosophy of skills acquisition Desire for community living Assumption of day program attendance Staff as supports not primary carers Not hired for this kind of work

Programming Models – How they are changing Philosophy of community maintenance Staff training/retraining Continuum of care Continuum of resources/supports Menus of services rather than fixed programs

Emerging Models of Service Provision Providing sound and responsive community care an increasing challenge. Referral out to non-specialized long care settings Aging in place model Special needs/special units Creating a continuum of services Development of dementia specific day programmes

Referral Out . . . Dynamics Threshold effect Tipping point Financial Policy Programmatic

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 dementia Given changing demographics support of aging in place critical.

Special Needs: Special Units Specialized staff and specialized environment best provide for long term care Geared 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

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?

Day Programming - Approaches Redesign for aging years Different staffing Training for staff Joint activity development by ID and AD staff Health support component

End of Life Concerns People with IDD at end stage disease no less in need of comfort measures nor of discussion of their wishes prior to advancement of disease Understanding requirements for substitute decision- making Collaboration with IDD services providers rather than their replacement by hospice/palliative care providers Training for hospice/palliative care providers on late stage disease, communication best practices, and life stories for people with IDD Support for families, peers with IDD and staff caregivers

Collaboration with AAAs and Alzheimer’s Providers - 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 groups Memory 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 issues Telehealth - newly funded (Special Hope Foundation) project to develop best practices for telehealth support from IDD and dementia experts

Challenges in Collaboration to be Addressed Shared Language Who pays for what? Mechanisms/agreements/MOUs Earlier intervention

Guidelines for Community Care and Supports for People with Intellectual Disabilities Affected by Dementia Guidelines 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 function Use: to help providers organize and deliver quality care and supports to people with ID affected by dementia http://aadmd.org/ntg/practiceguidelines

NTG Education & Training Curriculum on Dementia and IDD New national curriculum currently in development Curriculum 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

ID & Dementia Training CD-roms Available from . . . Center for Excellence in Aging & Community Wellness University at Albany Albany, NY 12222 qtac@albany.edu