Aging With A Developmental Disability

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Aging With A Developmental Disability

• Shahin Shooshtari, PhD
• Assistant Professor
• Departments of Family Social Sciences
• Community Health Sciences
• University of Manitoba
• Researcher, St Amant Research Centre

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OUTLINE

• Background
• Prevalence
• Older Adults with DD
• Health Disparities and DD
• Aging with DD Key Issues
• Current Gaps in Knowledge
• COA Funded Research Project

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BACKGROUND

• Developmental Disabilities (DDs) defined as
  conditions originating before the age of 18 that
  result in significant limitations in intellectual
  functioning, and conceptual, social and practical
  adaptive skills.
• (Luckasson et al. 2002)

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BACKGROUND

• Life-long conditions
• Direct and indirect impacts on all aspects of
  individuals lives.
• Those affected will need lifelong family and
  organizational support for health, education and
  social services, such as housing, recreation, and
  transportation.

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BACKGROUND

• Genetic syndromes (e.g., down syndrome, Fragile X
  syndrome, and Prader-Willi syndrome)
• Problems with the central nervous system (e.g.,
  cerebral palsy)
• Milder developmental disabilities

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PREVAELNCE

• In 2001, WHO estimated that 3 of the world
  population has some form of developmental
  disability.
• There are variations in the prevalence due to
• (1) true difference in prevalence
• (2) differences in definition of DD
• (3) differences in case-finding techniques.
• (Schrojenstein Lantman-de Valk et al. 1997)

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PREVALENCE IN CANADA

• In 1988, the rate of DD among Canadians was
  estimated at 0.8 (Health and Welfare Canada,
  1988).
• In 1996, the rate of DDs among Ontarians was
  estimated at o.56 (Nuyen, 1996).
• The overall administrative prevalence of DD in
  Lanark County in Ontario was estimated at 0.65
  using an agency survey (Ouellette-Kuntz
  Paquette, 2001).

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PREVALENCE IN CANADA

• When the survey data was combined with the data
  from the Ministry of Community and Social
  Services, the overall prevalence was increased to
  0.8-0.9 (Ouellette-Kuntz Paquette, 2001).
• Bradley et al. (2002) estimated prevalence of DD
  among teenagers in the Niagara Region of Ontario
  at 0.7.

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POPULATION WITH DD, CANADA, MANITOBA, 2001
Source Statistics Canada (2002). A Profile of
Disability in Canada, 2001.
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POPULATION HEALTH RESEARCH DATA REPOSITORY (MCHP)
Population-Based Health Registry
Census Data at EA level
National surveys
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PREVALENCE IN OTHER COUNTRIES
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Source Statistics Canada (2003)
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LIFE EXPECTANCY

• Life expectancy at birth for children with Down
  syndrome
• Year LE (Years)
• 1929 9
• 1947 12-15
• 1961 18
• 1980-1990s gt50
• (Source Haveman, 2004)

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GROWING POPULATION

• There were an estimated 526,000 individuals aged
  60 living with a developmental disability in the
  United States in 1998. This number is projected
  to double by 2030 (Heller and Factor, 1998).
• 479,000 adults with DD were living at home with
  parents who were aged 60 or older (Developmental
  Disabilities Act, 2000)

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Age-specific Rates (per 1,000) of Mental
Retardation, 1963-1998, England and Wales
Source Braddock et al. (2001)
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AGING WITH DD

• An area of growing concern
• Focus of research in some of the developed
  countries (e.g., Australia, Finland, U.S.,
  England)
• Very limited research in Canada

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HEALTH DISPARITIES AND DD

• Physical health
• Disability-related health problems
• Syndrome-related issues
• Lifestyle-related health problems
• Mental health
• Social well-being

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PHYSICAL HEALTH Disability-related health
problems

• Epilepsy (20)
• Mobility problems (30)
• Hearing Impairment (10)

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PHYSICAL HEALTH Syndrome-related issues

• Down Syndrome
• Congenital heart anomalies
• Respiratory Infections
• Leukaemia
• Early onset of Alzheimers type dementia

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PHYSICAL HEALTH Syndrome-related issues

• Fragile X Syndrome
• Problems in motor coordination
• Attention deficit disorders

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PHYSICAL HEALTH Lifestyle-related health
problems

• Mobility disorders, low level of physical
  activity, inadequate nutrition, and frequent
  medication use
• Osteoporosis and Fractures
• Obesity (29.5-50.5) Heart disease
• Malnutrition Hypertension
• Constipation Diabetes

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Physical Health Lifestyle-related health
problems

• Uptake of Health Promotion/Disease Prevention
  Activities
• Poor knowledge about dental hygiene (e.g., UK
  Department of Health, 2001 Waldeman and Perlman,
  2002)
• Low rate of screening and immunization (e.g.,
  Lewis et al. 2002)

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MENTAL HEALTH

• Psychiatric problems are more prevalent among
  people with DD (e.g., Esbensen et al. 2006).
• 50 of individuals with DD have a diagnosis of a
  psychiatric or behavioural disorder (e.g., Santos
  et al. 2002).
• High use of anti-psychotics and anti-epileptics
  (e.g., Branford 1994).
• Higher level of stress (e.g., Olsson Hwang
  2003).

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SOCIAL WELL-BEING

• Poverty (U.K. Department of Health 2001 LeRoy
  and Johnson 2002).
• Increased risk of social isolation (e.g., Solish
  et al. 2003 Balandin et al. 2006)
• Abuse and neglect (e.g., Aziz et al. 1999)

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AGING with DD Key Issues

• Physical Health
• Earlier development of some of the chronic
  conditions or diseases (dementia, arthritis)
• More severe degrees of sensory impairment
• More severe loss of flexibility in joint function
  
• Lack of basic knowledge about healthy lifestyle
  behaviors
• Receive less preventive health measures (e.g.,
  pap smears and mammograms)

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AGING with DD Key Issues

• Mental Health
• 30-60 of older persons with moderate to severe
  DD have a mental disorder.
• Challenge differentiation between dementia,
  depression and behavioral conditions related to
  developmental disability. Why?
• Seniors will DD will have difficulty in
  expressing their psychological problems.
• Care providers lack of expertise

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AGING with DD Key Issues

• Social Well-being
• De-institutionalization community living
  Challenge Aging parents/siblings providing care
  to an aging child with DD.
• Support services for caregivers
• Caregivers access to information
• Community participation leisure opportunities
• Few opportunities for decision-making
• Good substitute decision maker

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AGING with DD Key Issues

• Living Arrangements
• No national data on living arrangements of
  Canadian seniors with DD.
• Across Canada, group homes are the most
  frequent type of residential services provided by
  the community-based agencies (Pedler et al.,
  2000).

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Canada's Seniors At A Glance

• Canadian Council on Social Development for the
  Division of Aging and Seniors, Public Health
  Agency of Canada (2005)

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Seniors in Canada 2006 Report Card
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Seniors on the Margins
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CURRENT GAPS IN KNOWLEDGE

• Older Canadians with DD
• Who they are
• Where they live
• The kind of supports and services they have
  access to
• Unmet health care needs
• Unmet needs for social support services (e.g.,
  housing, recreation, social participation and
  transportation)

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PROPOSED STUDY

• Aging with A Developmental Disability
• Unmet Health Care and Social Services Needs

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STUDY OBJECTIVES

• 1) To create a demographic, socio-economic and
  health-related profile of older Canadian adults
  (45) who live with a developmental disability
  (DD) in the community
• 2) To enhance the current knowledge of their
  unmet health and social support services needs.

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International Classification of Functioning,
Disability and Health
Source World Health Organization, 2001
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RESEARCH METHODS

• Study Design Analysis of cross-sectional data
• Data Sources 2001 and 2006 PALS adult surveys.
• Target Population Individuals aged 15 living in
  private households and some non-institutional
  collective households, who answered yes to at
  least one of the two disability questions on 2001
  or 2006 Census.
• Study Samples The study sample will be
  restricted to respondents who (1) were at least
  45 years old at the time of their survey
  interview, and (2) reported having a
  developmental disability.

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STUDY MEASURES

• Developmental disability
• Has a doctor, psychologist or other health
  professional ever said that you () had a
  developmental disability or disorder? These
  include, for example, Down syndrome, autism,
  Asperger syndrome, mental impairment due to a
  lack of oxygen at birth, etc.

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Demographic Characteristics

• Age
• Sex
• Place of residence
• Living arrangements

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Socio-economic Characteristics

• Highest Level of Education
• Personal Income level
• Household Income Level
• Main Sources of Income

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Health-related Characteristics

• Overall Health Status
• Level of Functioning
• Smoking Behaviour
• Drinking behaviour

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Social Participation

• Frequency of participation in leisure and
  recreational activities within home
• Frequency of social activities outside home
• Barriers to doing more leisure activities

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Health Care Utilization

• Frequency of contacts with a physician
• Frequency of contacts with a psychologist, social
  work or counselor

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Health Care and Social Support Needs

• Help with everyday activities
• Unmet health or social needs
• Type of unmet health care or social support needs
  
• Reasons for not receiving the help, which was
  needed

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Health Care and Social Support Needs Help with
everyday activities Unmet health or social needs
Type of unmet health care or social support
needs Reasons for not receiving the help, which
was needed Health Care and Social Support
Needs Help with everyday activities Unmet
health or social needs Type of unmet health care
or social support needs Reasons for not
receiving the help, which was needed
Caregiver characteristic(2006 PALS)

• Age
• Sex
• Paid or unpaid work
• Relationship

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STATISTICAL ANALYSIS

• Unweighted and weighted frequencies
• A series of bivariate analyses to examine the
  cross-sectional association between each
  characteristic and unmet health and social
  support service needs
• Multiple logistic regression modelling
• Applying bootstrap weights to fully account for
  the survey design effect
• Data will be analyzed by sex (male versus female)
  and location of residence (rural versus urban)

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ETHICAL CONSIDERATION

• University of Manitoba Health Research Ethics
  Board (HREB).
• Statistics Canada (SC) and Social Sciences and
  Humanities Research Council of Canada (SSHRC)
• Location Manitoba RDC
• A number of measures will be employed to protect
  the confidentiality of the data.

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TIMELINE

• To start data extraction and preparation in July
  of 2008
• Data analysis to be completed by Dec. 2008
• Development of a CIHR Grant application for
  submission in March of 2009.

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SIGNIFICANCE

• Essential knowledge for those across different
  government departments including health, family
  services and housing, as well as community-based
  agencies and voluntary sectors involved in
  policy development, planning and provision of
  services to population of older adults with DD.

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SIGNIFICANCE

• Information on barriers to receiving the care and
  support which was needed, but not received,
  suggests great opportunities to intervene to
  enhance the quality of life of this population.

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ACKNOWLEDGMENT

• Centre On Aging
• University of Manitoba
• Eric Langlet Susan Stobert Statistics Canada

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THANK YOU