The Face of Cognitive Disabilities: Aging with Developmental Disabilities Tamar Heller RERC-ACT State of Science Conference October 25, 2007 Rehabilitation Research and Training Center on Aging with Developmental Disabilities Department of Disability and Human Development University of Illinois at Chicago Website:

Aging Well Means  Living on your own terms;  Adding value to society, family or friends;  Maintaining health and cognitive function, maximizing mobility, retaining function, and reducing the impact of chronic disease/dysfunction.

Later Life Concerns of Older Adults with I/DD  Age-related health changes  Aging in place  Coping with loss  Retirement  Financial security

Adding Value

Barriers to Aging Well  Earlier aging for some groups  Development of secondary conditions  Poorer access to health care  Aging and loss of parent caregivers  Communication difficulties  Obstacles to community participation  Lack of awareness and use of technology

Average Longevity of Adults with ID/DD

Focal Conditions/Disorders  Genetic conditions  Prader-Willi syndrome  Psychosis and behavioral changes  Obesity-related adverse outcomes  Williams syndrome  Premature memory loss  Problems in multiple organ systems  Fragile X syndrome  Fragile X-associated tremor/ataxia syndrome (FXTAS)  Down syndrome  Premature aging  Early onset dementia  Non-specific conditions  Autism spectrum disorders  Mental health aspects (depression, etc.)  Medication effects (long term)  Cerebral palsy  Deconditioning  Secondary conditions  Pain  Osteoporosis  GI & GU issues

Health Disparities  Worse health (mental health, oral health, sensory)  Restricted opportunities  Poorer access to good health care  Lack health promotion programs  More sexual and other abuse

Secondary Conditions  More secondary conditions  Obesity  Constipation  Poor dental hygiene (gingivitis)  Skin problems  Osteoporosis and fractures  Diabetes  Incontinence  High blood pressure

Emerging Challenges: Demographic Wildcards Source: Fujiura, G.T. (2001). The forgotten generation: A Demographic Argument on Behalf of the Continuum of Intellectual Disability. RRTC on Aging and Mental Retardation. Demographic Challenge : Where People Live:US

Aging Household Heads:  approximately 25% of the home-based population live in homes headed by elderly parents or other relatives Emerging Challenges: Demographic Wildcards Source: (1998). Demography of family households. American Journal on Mental Retardation, 103, (2005) Braddock et al. State of the States, University of Colorado.

Families as Primary Caregivers  Families face own aging and aging of adult with ID  Families provide most of social-recreational support  Many unknown to disability services  Adult with ID often outlives parents  After death, face loss and transition

Need for Future Planning

Could people with ID do future planning training on the internet with support?  A. Yes  B. No

Communication Issues  Difficulty reading—need for graphics  Difficulty understanding instructions-need to repeat in simple language  May have negative experiences in communicating  Limited opportunities for making choices  Need to develop rapport

Supporting Community Participation with Assistive Technology & Environmental Interventions  Improves function  Reduces need for personal care  Increases community participation  Enables “aging in place”

Physical Barriers “there’s no lights here- oh oh, we better hurry” “it’s hard getting on the bus” Physical Supports “nice wide ramp– we can walk together” Hammel, 2006

No pictures on menus Cluttered aisles - no signage Cognitive Barriers Cognitive Supports Menus with pictures and easy to follow cognitive cues Accessible Signage (pictoral, tactile, constant cueing)

Clerk not supportive (e.g., time, respect) Social Barriers Social Supports Site gives an advanced tour without crowds to preplan participation