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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

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the face of cognitive disabilities aging with developmental disabilities tamar heller

The Face of Cognitive Disabilities: Aging with Developmental DisabilitiesTamar 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: www.rrtcadd.org

aging well means
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
Later Life Concerns of Older Adults with I/DD
  • Age-related health changes
  • Aging in place
  • Coping with loss
  • Retirement
  • Financial security
barriers to aging well
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
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

Focal Conditions/Disorders
health disparities
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
Secondary Conditions
  • More secondary conditions
    • Obesity
    • Constipation
    • Poor dental hygiene (gingivitis)
    • Skin problems
    • Osteoporosis and fractures
    • Diabetes
    • Incontinence
    • High blood pressure
slide10

Emerging Challenges: Demographic Wildcards

Demographic Challenge : Where People Live:US

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.

slide11

Emerging Challenges: Demographic Wildcards

Aging Household Heads:

  • approximately 25% of the home-based population live in homes headed by elderly parents or other relatives

Source: (1998). Demography of family households. American Journal on Mental Retardation, 103, 225-235.

(2005) Braddock et al. State of the States, University of Colorado.

families as primary caregivers
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
communication issues
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
Supporting Community Participation with Assistive Technology & Environmental Interventions
  • Improves function
  • Reduces need for personal care
  • Increases community participation
  • Enables “aging in place”
physical barriers

Physical Supports

“it’s hard getting on the bus”

“nice wide ramp– we can walk together”

Hammel, 2006

“there’s no lights here-oh oh, we better hurry”

Physical Barriers
cognitive barriers

Cognitive Supports

No pictures on menus

Cluttered aisles - no signage

Cognitive Barriers

Menus with pictures and easy to follow cognitive cues

Accessible Signage

(pictoral, tactile, constant cueing)

social barriers

Social Supports

SocialBarriers

Clerk not supportive (e.g., time, respect)

Site gives an advanced tour without crowds to preplan participation