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

 

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 Later Life Concerns of Older Adults with I/DDI/DD

Age-related health changes

Aging in place

Coping with loss

Retirement

Financial security

 

Adding Value Adding Value

 

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

 

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

 

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

 

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

 

Secondary ConditionsSecondary Conditions

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

 

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

 

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.

 

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

 

Need for Future PlanningNeed for Future Planning

 

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

 

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

 

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”

 

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

 

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)

 

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

SocialSocial BarriersBarriers Social SupportsSocial Supports

Site gives an advanced tour without crowds to preplan

participation