The Face of Cognitive Disabilities: Aging with Developmental Disabilities Tamar Heller
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Transcript of The Face of Cognitive Disabilities: Aging with Developmental Disabilities Tamar Heller
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The Face of Cognitive The Face of Cognitive Disabilities: Aging with Disabilities: Aging with
Developmental DisabilitiesDevelopmental DisabilitiesTamar HellerTamar Heller
RERC-ACT State of Science ConferenceOctober 25, 2007
Rehabilitation Research and Training Center on Aging with Developmental DisabilitiesDepartment of Disability and Human
DevelopmentUniversity of Illinois at Chicago
Website: www.rrtcadd.org
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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.
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Later Life Concerns of Older Adults with Later Life Concerns of Older Adults with I/DDI/DD
Age-related health changes
Aging in place
Coping with loss
Retirement
Financial security
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Adding Value Adding Value
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Barriers to Aging WellBarriers 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
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Average Longevity of Adults Average Longevity of Adults with ID/DDwith ID/DD
19
59 66
0
10
20
30
40
50
60
70
1930s 1970s 1993
No Down SyndromeAge
931
56
0
10
20
30
40
50
60
1920s 1960s 1993
Down SyndromeAge
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Focal Conditions/DisordersFocal 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
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Health DisparitiesHealth 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
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Secondary ConditionsSecondary Conditions
More secondary conditions Obesity Constipation Poor dental hygiene (gingivitis) Skin problems Osteoporosis and fractures Diabetes Incontinence High blood pressure
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Emerging Challenges: Demographic Wildcards
National Health Interview Survey (preliminary)
with family76%
in long term care10%
with spouse6%
own home8%
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
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1,110984
712
0
200
400
600
800
1,000
1,200
< 41 yrs 41-59 yrs 60+ yrs
Age of Household Head
Per
son
s w
ith
MR
DD
in
th
ou
san
ds
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, 225-235. (2005) Braddock et al. State of the States, University of Colorado.
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Families as Primary Families as Primary CaregiversCaregivers
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
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Need for Future PlanningNeed for Future Planning
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Could people with ID do Could people with ID do future planning training on future planning training on the internet with support?the internet with support?
A. Yes B. No
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Communication IssuesCommunication 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
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Supporting Community Supporting Community Participation with Participation with
Assistive Technology & Assistive Technology & Environmental Environmental InterventionsInterventions
Improves function Reduces need for personal care Increases community participation Enables “aging in place”
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Physical Physical BarriersBarriers
“there’s no lights here-oh oh, we better hurry”
“it’s hard getting on the bus”
Physical SupportsPhysical Supports
“nice wide ramp– we can walk together”
Hammel, 2006
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No pictures on menus
Cluttered aisles - no signage
Cognitive BarriersCognitive Barriers Cognitive Cognitive SupportsSupports
Menus with pictures and easy to follow cognitive cues
Accessible Signage
(pictoral, tactile, constant cueing)
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Clerk not supportive (e.g., time, respect)
SocialSocial BarriersBarriers Social SupportsSocial Supports
Site gives an advanced tour without crowds to preplan
participation