1. 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

2. 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.

3. 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)

4. 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 Archives of Neurology; Cooper, SA JIDR
Alzheimer's Association Alzheimer's Disease Facts and Figures, 2014

5. 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

6. 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

7. 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

8. 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

9. 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

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

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 dementia
Given changing demographics support of aging in place critical.

12. 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

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

15. 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

16. 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

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

18. 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

19. 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

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