1. SW 644: Issues in Developmental Disabilities Aging Parents of Children with Mental Retardation Lecture Presenter: Marsha Seltzer, Ph.D.

2. Family Care Givers  Care giving experience Type of relationship Type of disability Duration of dependency Characteristics of care giver and care recipient

3. 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

4. Background Information  Out-of-home placement vs. in-home placement  Lifespan  Percentage of people with MR residing in the parental home by age

5. Aging  Aging of US society (1900 – 2050)  Needs of older families differ from younger

6. Rationale  Dual challenge – continued care giving responsibilities and adjusting to their own aging (also, care giving to other family members)

7. 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

8. 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

9. 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%

10. 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

11. Measures  Interviews – self administered with siblings, adult with MR, and parent

12. Mothers of Adults with MR  Source of stress Aging process Care giving Other responsibilities

13. Sources of support  Family  Social  Formal

14. Personal Resources  Coping abilities  Locus of control  Self-esteem  Optimistic outlook

15. Well-being  Physical health  Mental health  Positive and negative feelings about care giving

16. Two Examples  Sullivans  Petersons

17. Findings – Comparison with Other Families  Comparison of well-being Better physical health Less depression More satisfied with life Less stressed Less burdened

18. Possible Explanations  Self-selection process  Adjustment over time  Deriving benefit from relationship  Continued sense of purpose

19. Motivation for Lifelong Care Giving  Family responsibility  Distrust of alternatives  Protection  Mutual benefits  No alternatives

20. 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%)

21. 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

22. 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

23. Impact of Out-of-Home Placement on Mothers  Higher rate of depressions Result of care giver’s own illness Loss of meaningful role

24. Coping with Dual Challenge  Benefits of giving

25. Statements from Mother

26. 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