SW 644: Issues in Developmental DisabilitiesAging Parents of Children with Mental
Retardation
Lecture Presenter:
Marsha Seltzer, Ph.D.
Family Care Givers
Care giving experience Type of relationship Type of disability Duration of dependency Characteristics of care giver and care
recipient
Study – Aging Families of Children with MR: The Impact of Lifelong Care Giving
Variables of interest Coping style Consequences of changes in family
composition Factors associated with favorable well-
being in older women with an unusual care giving experience
Background Information
Out-of-home placement vs. in-home placement
Lifespan Percentage of people with MR
residing in the parental home by age
Aging
Aging of US society (1900 – 2050) Needs of older families differ from
younger
Rationale
Dual challenge – continued care giving responsibilities and adjusting to their own aging (also, care giving to other family members)
Goal – Respond to Gap in Knowledge Base
Predictors of positive outcomes for young families with an adult child with MR
Gerontology – caring for an elderly relative
Why Study Older Care Giving Families?
Persons with MR are living longer Older persons can be family resources Parenting after the child is an adult is
an “off-cycle” role In this example, the care recipient will
be the survivor We’ll need to learn more about
changes in family composition
Methods Sample drawn from 2 states
Massachusetts (225) and Wisconsin (225) = 450
Sample is mainly middle class, Caucasian
Age of mother: 55-64 ~ 50% and 65+ ~ 50%
Age of adult with MR: 20-34 ~50% & 35+ ~ 50%
Methods (cont.)
Gender of adult – ½ male & ½ female Level of MR: mild/moderate ~75%
and severe/profound ~25% Low divorce rate ¼ still employed
Measures
Interviews – self administered with siblings, adult with MR, and parent
Mothers of Adults with MR
Source of stress Aging process Care giving Other responsibilities
Sources of support
Family Social Formal
Personal Resources
Coping abilities Locus of control Self-esteem Optimistic outlook
Well-being
Physical health Mental health Positive and negative feelings about
care giving
Two Examples
Sullivans Petersons
Findings – Comparison with Other Families
Comparison of well-being Better physical health Less depression More satisfied with life Less stressed Less burdened
Possible Explanations
Self-selection process Adjustment over time Deriving benefit from relationship Continued sense of purpose
Motivation for Lifelong Care Giving
Family responsibility Distrust of alternatives Protection Mutual benefits No alternatives
Future Options of Adult Child with MR
Another family member takes over care (50%)
Out-of-home placement, formal (9%) Both (23%) No plans (17%)
Siblings of Adult with MR
Provide emotional support (80%) Provide direct care (20%) Older sister is most likely to have
greater involvement, or the sibling of the same sex
Siblings of Adult with MR (cont.)
No sibling – mother tends to feel greater degree of burden, stress, and is at greater risk for poorer health and less life satisfaction
Mother sensitivity toward sibling and adult with MR relationship
Family size and maternal well-being
Impact of Out-of-Home Placement on Mothers
Higher rate of depressions Result of care giver’s own illness Loss of meaningful role
Coping with Dual Challenge
Benefits of giving
Statements from Mother
Conclusions
Later life parenting provides a meaningful role to older persons
Function of giving or nurturance in older age
What differentiates the mothers in the study from other older women is that their “giving” has lasted much longer and is much more intensive