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Title: Overview on Aging and Related Issues to Adults with Intellectual Disabilities


1
Overview on Aging and Related Issues to Adults
with Intellectual Disabilities
  • Matthew P. Janicki, Ph.D.
  • University of Illinois at Chicago, USA
  • mjanicki_at_uic.edu

Hong Kong Joint Council for People with
Disabilities / Hong Kong Council of Social
Service Hong Kong June 29, 2009
2
  • 935am 1015am ? 40 minutes
  • 35 slides

3
Considerations
  • The demographics
  • How will changes in the population affect
    concerns for aging people?
  • W.H.O. concerns of aging people with disabilities
  • What are the key concerns and issues?
  • Partnerships, planning, improving quality of life
  • How do we address these challenges?

4
The demographics How will changes in the
population affect people who are aging and who
have a disability?
5
Worldwide Aging
  • Why Changes?
  • Decrease in perinatal and infant mortality
  • Decline in birth rates
  • Improvement in nutrition
  • Better basic health care
  • Control of infectious diseases
  • Persons Age 60
  • In 1950 - 200 mil.
  • In 1975 - 350 mil.
  • In 2000 - 590 mil.
  • In 2050 - 1,000 mil.
  • In 50 years, older people will be 13.7 of the
    worlds population

6
Percent of national population age 65 and older
Hong Kong - Population 2000 7.1m
Population 2020 8.7m Population
gt65 12
7
People with intellectual disabilities
  • Characterized by
  • Below normative intellectual functioning, due to
    cognitive impairment (organic or functional)
    present since birth or infancy
  • Not a mental illness or psychiatric impairment
  • Varies in degree and co-impairment
  • Compensated by training, education, remediation,
    habilitation, supports for life activities
  • Down syndrome is a chromosomal abnormality
    present at birth (21) associated with ID In
    adults, age 40, occurs in 10-12

Some may refer to ID as mental retardation
8
Proportion of older population of adults
w/intellectual disabilities
  • Currently about 75 of all older adults with
    intellectual disabilities are in the 40-to-60 age
    group
  • Expectations are that the 60 age group will
    increase threefold over the next 20 years

Age
9
What is contributing to longevity?
  • Available and effective health care (medical
    training in disabilities, better nutrition,
    disease prevention)
  • Research about growing older (richer medical and
    social science literature enabling better
    services)
  • Cohort differences (40-year-olds born in the
    1960s different life experiences)
  • Public policy attention (governmental financing
    of services, laws, regulations)
  • Education (academic interest in gerontology and
    greater awareness among administrators,
    educators, and professionals)

10
Demographers and researchers tell us
  • The older population will increase dramatically
    in the next 10-20 years
  • Current and future older adults will be healthier
    and better educated than previous generations
  • There is a low expectation that families will be
    able to absorb all the older persons who will
    need care at home
  • Although older adults will be healthier, those
    adults with disabilities will still need health
    and social services

11
W.H.O. concerns of aging people with
disabilities What are the key concerns and issues?
12
Contingencies staffing supports living
setting barrier removal
Beginning impact of effects of interaction of
lifelong disability and aging
Wellness social capacities
Encourage continued independency
Continued good health and function
Delayed emergence of disease or dysfunction
Early disease or dysfunction
Age-related pathologies
Forced dependency
Older age
independency
dependency
interdependency
13
  • Normal vs. positive aging
  • Expected changes that come with longevity
  • Optimized life circumstances
  • Successful aging and disability (health,
    capacity, and contribution)
  • Normal vs. pathological aging
  • Being affected by disease and decline
  • Marked changes deleterious outcomes
  • Aging in place
  • Growing older where you live

14
What is the research telling us about
age-associated decline?
  • Physical changes in old age occur with
    predictability
  • Decline occurs in expected patterns
  • Adults with motor, neurological and other
    significant co-conditions impacted much more
    adversely
  • Alzheimers disease other dementias occur at
    norm except for certain conditions (e.g., Down
    syndrome)

15
The WHO Reports
Healthy Ageing Adults with Intellectual
Disabilities Ageing Intellectual
Disability Improving Longevity and Promoting
Healthy Ageing Summative report (WHO, 2000)
Ageing and Intellectual Disabilities Improving
Longevity and Promoting Healthy Ageing
Journal of Applied Research in Intellectual
Disabilities (JARID), 2001, Vol. 14(3), 171-275
16
Physical health concerns
  • Alzheimers disease and related dementias
  • Physical deconditioning and loss of stamina
  • Obesity-related diseases
  • Sensory impairments
  • Poly-pharmacy and adverse medication reactions
  • Mobility impediments
  • Tobacco or second-hand smoke
  • Exposure to toxicity in work place
  • Contagious diseases
  • Abuse and violence
  • Poor nutrition (lack of availability or by
    choice)
  • Non-medical drug use
  • Passive lifestyle

Source Prasher, V., Janicki, M.P. (2002).
Physical health and adults with intellectual
disabilities. Oxford Blackwell Science
17
Mental health concerns
  • Misunderstanding of differences between mental
    illness and intellectual/ cognitive disability
  • Biological vs. social factors causing mental
    illnesses or psychiatric conditions
  • Psychiatric diagnostic inadequacies
  • Bias toward institutionalization or the lack of
    adequate community supports
  • Life-course stressors
  • Loss of family or friends (reactive depression)
  • Medical condition affecting mental health
  • Psychiatric condition affecting physical health
  • Social unrest life disruption - violence
  • Not understanding age-related changes
  • Discordance over older age role expectations

Source Davidson, P.W., Prasher, V., Janicki,
M.P. (2003). Mental health, intellectual
disabilities, and the aging process. Oxford
Blackwell Science
18
Health-related dependency
  • Disease states
  • Cardiovascular disease, cancer, respiratory
    disorders, musculoskeletal connective tissue
    diseases, obesity-related diseases, etc.
  • Deconditioning and dysfunction
  • Loss of muscle reserve, changes in stamina,
    sensory impairments, mobility issues
  • Cognitive pathologies
  • Alzheimers disease, vascular dementia, MCI

19
Societal-related dependency
  • Death, infirmity, retirement, or move of parent
    or kin carers
  • Deficient social policies for helping people with
    disabilities
  • Lack of alternative places to live
  • Diminishing social network (loss of friends,
    relatives, others)
  • Lack of independent source of funds

20
Health concerns of women with disabilities
  • Discrimination against women with disabilities
    denial of services devalued status
  • Abuse and neglect
  • Variability of health care
  • Lack of screening for age-associated conditions
    due to disability
  • Inadequate research education

Source Walsh, P.N., Heller, T. (2002).
Health of women with intellectual disabilities.
Oxford Blackwell Science
21
Alzheimers disease and adults with disabilities
  • Increasing risk of Alzheimers disease (an
    age-associated condition) due to population aging
  • Greater risk of Alzheimers disease among adults
    with Down syndrome and with serious head injuries
  • Many carers or care provision agencies not
    prepared for occurrence of dementia as adults
    with disabilities age

22
WHO Promoting Healthy Aging gtgt the Barriers
ltlt
  • Barriers to Longevity
  • Disease/malnutrition/poverty in childhood
  • Lack of (or deficient) health services
  • Poor population health status
  • Poor nutrition and hygiene
  • Lack of employment or activities
  • Unavailable rehabilitation supports
  • Inadequate housing
  • Impediments to healthy aging
  • Myths and stigma associated with disability
  • Poor general or national health status
  • Specialty health systems lacking for persons with
    disabilities
  • Poorly organized state mechanisms for supports to
    persons with disabilities
  • Scant information or research

Source WHO. (2000). Ageing Intellectual
Disability Improving Longevity and Promoting
Healthy Ageing Summative report. Geneva World
Health Organization
23
Factors affecting quality of life and the aging
process of people with disabilities
  • Uncertainties related to aging of parents
  • Dysfunctional dependency
  • Role-reversal with adult with a disability
    assuming carer responsibilities
  • Challenging behaviors
  • Cognitive impairment or decline (pre-dementia)
  • Parents age they may retire, become ill or
    infirm, die, move
  • Some adults w/ ID have unnatural over-dependency
    some parents foster over-dependency
  • How effective an advocate can a son/daughter be?
    How to support them as carers?
  • Behaviors that irritate may evolve for varying
    reasons (chronicity, pain, lack of attention,
    etc.)
  • Judgment and other decision making, taking care
    of oneself, being able to be left alone

24
Aging good and bad parts
  • Things that are adverse with age
  • Sensory physical changes in old age occur with
    predictability
  • Decline occurs in expected patterns
  • Adults with motor, neurological and other
    significant co-conditions impacted much more
    adversely
  • Alzheimers disease other dementias occur at
    norm except for certain conditions (e.g., Down
    syndrome)
  • Things that are preventatives
  • Physical exercise can help keep bones and muscles
    in good condition
  • Nutrition and healthy diet helps keep body
    healthy
  • Movement, activities and social engagement keeps
    spirit up and cognitive functions healthy
  • Cardiovascular fitness, mental activity, and
    alertness helps keep cognitive decline at bay

25
What lifelong factors help produce an healthier
old age?
  • Exercise and fitness
  • Nutrition and diet
  • Disease prevention
  • Social involvement
  • Early medical attention
  • Periodic screenings and immunizations

Source WHO. (2000). Ageing Intellectual
Disability Improving Longevity and Promoting
Healthy Ageing Summative report. Geneva World
Health Organization
26
Transitions and Life Focal Points for People with
Intellectual Disabilities
Living on own or with group Retirement Health
care Community involvement
Living with family Help for family
carers Vocational training and work Health
care Community skill development
Life focal points
Old age
Pensioning Physical mental decline Loss of
carers
Middle age
Living with family Help for families Schooling Med
ical care Recreation
Living on own Changes in health Lifestyle
changes Family/carer aging
Young adult
School leaver Possible living on
own Independent of family
Transitions
Childhood
27
Daily Living
Housing
Health
Social Involvements
28
Housing
  • Issues related to
  • If living in family home
  • Supports for carers
  • Modifications to home if physical needs change
  • If in non-family settings
  • Financial supports
  • Aging in place supports
  • Home sharing finding housemates

Daily Living
  • Issues related to
  • Aid with finding employment
  • Enrolment in community third age activities
  • Learning community living skills
  • Self-advocacy for meeting needs
  • Help with shopping and other daily activities
  • Civic involvements

Social Involvements
Health
  • Issues related to
  • Maintaining a network of friends
  • Involvement in
  • community activities
  • neighborhood amenities
  • civic affairs
  • Recreational outlets (active and passive)
  • Self-initiated activities
  • Issues related to
  • Stable affiliation with physician, clinic, or
    other health care center
  • Periodic health screening for aging related
    conditions or diseases
  • Dental care (oral health)
  • Mental health care
  • Specialty care for physical disability

29
Factors that can enhance quality of life
  • Network of friends and involvement in life of
    community
  • Easy use of neighborhood amenities
  • Accessible and affordable housing
  • Work or other challenging activities
  • Recreational outlets (active and passive)
  • Valued status by community

30
Partnerships, planning, and improving quality of
life. . . How do we address these challenges?
31
Social planning
  • Planning for aging population
  • Identifying who are the older adults and carers
  • Determining what they may need
  • Looking at demographic trends
  • Recognizing that needs are often linked to age
    (younger-older vs. older-older)
  • Thinking in terms of creative approaches to
    supports
  • Involving the families in the planning
  • Working with government for institution of
    universal models for helping families and people
    with disabilities
  • Factors affecting planning
  • Dynamics of population demographics how they
    change?
  • Economic security extant pensions and financial
    aid to people with disabilities?
  • Presence or lack of aging-friendly communities
    neighborhoods
  • Public policy focus with increasing age aging
    or disability?
  • Governmental policies and commitment to solving
    long-term or future problems - what level and
    whether legislative or administrative?

32
Extracts from Hong Kong Rehabilitation Programme
Plan
  • ?General
  • To conduct regular statistical surveys to update
    the data of different categories of persons with
    disabilities with a view to formulating
    appropriate rehabilitation policies and services.
  • ?Day Care, Community Support and the Development
    of Self-help
  • Organizations
  • To continue to strengthen the day care and
    community support services provided to persons
    with disabilities living in the community with a
    view to improving the quality of life of persons
    with disabilities and their carers.
  • ?Residential Care
  • To develop diversified residential services by
    continuing to provide subvented hostel service to
    those in need, assisting NGOs in developing
    self-financing hostels and regulating the service
    quality of private hostels.
  • ?Prevention and Identification
  • To develop effective measures for disease
    prevention by carrying out extensive consultation
    with persons with disabilities, people with
    chronic illness and self-help organizations.


http//www.lwb.gov.hk/eng/advisory/rac/rpp_report.
htm
33
Directions for Sustainable Development Hong Kong
Rehabilitation Programme Plan 2005-2007
Rehabilitation Programme Plan Review Working Group
  • 8.3 With an ageing population, the demand of
    persons with disabilities for residential
    services will increase progressively. Moreover,
    it is envisaged that drastic changes in social
    environment and increase in work pressure will
    also lead to a rise in the number of persons with
    psychiatric disabilities and their demand for
    residential services. In this connection, it is
    recommended to
  • formulate long-term plan for persons with
    disabilities in terms of residential services and
    develop in a continuous manner various kinds of
    residential services with different levels of
    support to meet the needs of persons with
    disabilities
  • continue to strive to help persons with
    disabilities to live in the community and to
    ensure that residential services and community
    support services complement each other and are
    developed in parallel
  • 9.3 to help persons with disabilities integrate
    fully into the community day care and
    community services can help persons with
    disabilities continue to live at home by
    developing their abilities to live independently
    and enhancing the caring capacity of their
    families, so as to improve the quality of their
    lives. These services have been playing a very
    important role in achieving this particular
    objective of the rehabilitation policy. Hence, it
    is recommended to
  • continue to develop the day care and community
    support services, with special efforts dedicated
    to enhancing people oriented service programs,
    support to carers, community mutual help networks
    and multi-disciplinary support, with a view to
    helping persons with disabilities integrate fully
    into the community and
  • promote tripartite collaboration among the
    Government, business sector and the community,
    and explore and utilize social resources for
    providing support and services to persons with
    disabilities in an innovative manner.

34
Partnerships and collaborations
Academic institutions
NGOs/charitable organizations/ Providers/Business
community
Government agencies/ departments
National advocacy organizations/ parent
associations
35
Social planning goals
  • Effective accessible health services
  • Ensuring diseases and conditions are caught early
  • Nutrition and exercise
  • Preventing obesity and deconditioning
  • Prevention of secondary conditions
  • Avoiding additional impairments from occurring
  • Geriatric assessments
  • Diagnosing ills and problems of older age
  • Mental health interventions
  • Preventing depression, and other ills

36
Ensuring healthier and productive aging for
people with disabilities
  • Promote a better understanding of people with
    aging with a disability and their needs
  • Work to make communities disability friendly
  • Assure that services and supports have quality
    as a defining factor
  • Promote greater education of personnel
  • Involve people with disabilities in decision
    making
  • Provide adequate financing for community services
    and aid to families

37
Societal end products
  • Promoting life-long health to produce healthy
    aging
  • Providing health care and attending to disability
    related needs
  • Having accessible and affordable housing
  • Continuing involvement in the fabric of community
    social situations and experiences
  • Addressing problems stemming from pathological
    aging
  • Helping older families who are carers

38
Concluding points
  • Becoming enablers
  • Educating - stimulating awareness of aging, its
    physical, social, and mental components among
    providers
  • Planning understanding the demographics of the
    ID population and projecting the trajectories of
    health status, housing needs, and other supports
  • Financing ensuring that budgets reflect
    resources for supporting retirement, aging in
    place, and dealing with pathological aging issues

39
Overview on Aging and Related Issues to Adults
with Intellectual Disabilities Hong Kong, June
29, 2009
Matthew P. Janicki, Ph.D. University of Illinois
at Chicago mjanicki_at_uic.edu
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