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					    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



                                                                          1
      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



                                            2
   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


                                                      3
 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



                                               4
 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?




                                            5
          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

                                              6
  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



                                                   7
     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




                                               8
        Question #2



What factors explain parental

     well-being in later life?




                                 9
     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.




                                               10
    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



                                         11
Buffering of Depressive
Symptoms by Problem-
   Focused Coping

        15

        10
CES-D




        5

        0
                   Low           High
                 CAREGIVING DEMANDS

             Low use of PFC   High use of PFC




                                                12
   Amplification of
Depressive Symptoms by
Emotion-Focused Coping


         12
         10
          8
 CES-D




          6
          4
          2
          0
                Low             High
                CAREGIVING DEMANDS
              Low use of EFC   High use of EFC




                                                 13
  Multiple Role Effects

 Other roles
  employee           parent/grandparent
  caregiver          friend
  volunteer          relative
  spouse             neighbor

 Role overload hypothesis
  multiple roles are overwhelming

 Role enhancement hypothesis
  multiple roles promote social
    integration, social support, and
    self-esteem
                                       14
         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



                                             15
What Aging Mothers
Can Do To Maintain
    Well-Being

 Coping (problem-focused)

 Maintain multiple roles

 Social support




                             16
 Challenges For The
       Future

Creative family-service system
 partnerships

Extend our understanding of
 caregiving across multiple
 contexts

 Increase public funding of
 family-support services


                                  17

				
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