Overview on Aging and Related Issues to Adults with Intellectual Disabilities

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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
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• 935am 1015am ? 40 minutes
• 35 slides

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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?
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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

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Percent of national population age 65 and older
Hong Kong - Population 2000 7.1m
Population 2020 8.7m Population
gt65 12
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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
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Proportion of older populationof 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
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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)

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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

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W.H.O. concerns of aging people with
disabilitiesWhat are the key concerns and issues?
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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
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• 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

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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)

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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
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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
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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
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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

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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

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Health concerns of womenwith 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
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Alzheimers disease and adultswith 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

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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
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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

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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

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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
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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
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Daily Living
Housing
Health
Social Involvements
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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

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Factors that can enhancequality 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

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Partnerships, planning, and improvingquality of
life. . . How do we address these challenges?
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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?

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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
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Directions for Sustainable DevelopmentHong Kong
Rehabilitation Programme Plan2005-2007
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.

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Partnerships and collaborations
Academic institutions
NGOs/charitable organizations/ Providers/Business
community
Government agencies/ departments
National advocacy organizations/ parent
associations
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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

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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

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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

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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

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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