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