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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, ColoradoOctober 15, 2001

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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

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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

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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

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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?

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Study Design

Sample Criteriamothers age 55 and overson or daughter with mental retardation

lives at home

Sources of Datamothersfatherssiblings

Frequency of Data Collection8 waves of data collection (1988 - 2000)every 18 months

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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

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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

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Question #2

What factors explain parental

well-being in later life?

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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.

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Stress and Coping Framework (Pearlin)

Problem-focused coping aims to alter/manage the problem

Emotion-focused coping aims to reduce/manage emotional distress

Stressful situationshigh levels of caregiving demandssevere behavior problems

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Buffering of Depressive Symptoms by Problem-

Focused Coping

0

5

10

15

Low High

CAREGIVING DEMANDS

CES-

D

Low use of PFC High use of PFC

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Amplification ofDepressive Symptoms by Emotion-Focused Coping

02468

1012

Low High

CAREGIVING DEMANDS

CE

S-D

Low use of EFC High use of EFC

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Multiple Role Effects

Other rolesemployeecaregivervolunteerspouse

parent/grandparent friend relative neighbor

Role overload hypothesismultiple roles are overwhelming

Role enhancement hypothesismultiple roles promote social integration, social support, and

self-esteem

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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

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What Aging Mothers Can Do To Maintain

Well-Being

Coping (problem-focused)

Maintain multiple roles

Social support

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Challenges For The Future

Creative family-service system partnerships

Extend our understanding of caregiving across multiple contexts

Increase public funding of family-support services