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 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 ( )  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 of Depressive Symptoms by Emotion-Focused Coping

14 Multiple Role Effects  Other roles  employee  caregiver  volunteer  spouse  parent/grandparent  friend  relative  neighbor  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