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Life Span Perspectives on Families of Persons with Cognitive Disabilities

Life Span Perspectives on Families of Persons with Cognitive Disabilities. Marty Wyngaarden Krauss Heller School Brandeis University and Marsha Mailick Seltzer Waisman Center University of Wisconsin-Madison. “Exploring Research Frontiers and Partnerships in Cognitive Disability”

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Life Span Perspectives on Families of Persons with Cognitive Disabilities

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  1. Life Span Perspectives on Families of Persons with Cognitive Disabilities Marty Wyngaarden Krauss Heller School Brandeis University and Marsha Mailick Seltzer Waisman Center University of Wisconsin-Madison “Exploring Research Frontiers and Partnerships in Cognitive Disability” The Coleman Institute for Cognitive Disabilities Aspen, Colorado October 15, 2001

  2. Issues Addressed: • Prevalence of family-based care among persons with developmental disabilities • New knowledge about family-based care • Findings from a decade of research on older families • Challenges for the future

  3. Prevalence of Family-Based Care • Roughly 60% of persons with developmental disabilities reside with their families • Family-based care serves five times the number of people in other types of residential care • Among adults with DD living with family, 25% are aged 60 or over, 35% are between 41-59 years of age, and 40% are 41 years or younger • Over 83,000 individuals now on waiting lists for residential services • Only 3% of approximately $22.8 billion spent on DD services is targeted toward family support services

  4. New Knowledge About Family-Based Care • Increased life expectancy for persons with DD extends duration of family-based care • Family based care is preferred option • Need for a life span developmental perspective regarding family-based care • Unanticipated lives: Gratifications and challenges of family-based care

  5. Questions Addressed in our Research • How well do older families adapt to the challenges of lifelong caregiving? • What factors explain parental well-being in later life?

  6. Study Design • Sample Criteria • mothers age 55 and over • son or daughter with mental retardation lives at home • Sources of Data • mothers • fathers • siblings • Frequency of Data Collection • 8 waves of data collection (1988 - 2000) • every 18 months

  7. Sample Characteristics in 1988 (Time 1) • Average age of mothers: 66 years • 2/3 married • 1/4 employed outside the home • Average age of adults with mental retardation: 33 years • 54% sons; 46% daughters • 80% mild or moderate retardation • 1/3 Down syndrome • 90% in a day program

  8. The Well-Being of Mothers • No greater parenting stress than mothers of young children • No greater burden of care than caregivers of elderly relatives • Comparable levels of life satisfaction as other women their age and no greater level of depression • Comparable size of social support network as other women their age

  9. Question #2 • What factors explain parental well-being in later life?

  10. Mothers’ Subjective Perceptions of How They Have Coped • They have altered what they value in life. • Their child has given them a mission to work for. • The relationship with their son or daughter is reciprocal.

  11. Stress and Coping Framework (Pearlin) • Problem-focused coping aims to alter/manage the problem • Emotion-focused coping aims to reduce/manage emotional distress • Stressful situations • high levels of caregiving demands • severe behavior problems

  12. Buffering of Depressive Symptoms by Problem-Focused Coping

  13. Amplification ofDepressive Symptoms by Emotion-Focused Coping

  14. Other roles employee caregiver volunteer spouse parent/grandparent friend relative neighbor Multiple Role Effects • Role overload hypothesis • multiple roles are overwhelming • Role enhancement hypothesis • multiple roles promote social integration, social support, and self-esteem

  15. Social Support • Longitudinal effect of social support on psychological well-being • For women in their 60’s. . . • A larger network of friends and family was beneficial • For women in their 70’s and 80’s. . . • More emotional support was beneficial

  16. What Aging Mothers Can Do To Maintain Well-Being • Coping (problem-focused) • Maintain multiple roles • Social support

  17. Challenges For The Future • Creative family-service system partnerships • Extend our understanding of caregiving across multiple contexts • Increase public funding of family-support services

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