AGING MOTHERS OF RETARDED ADULTS--IMPACTS OF CAREGIVING

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This application seeks support for the continuation (Years 6-10) of our longitudinal study of 461 aging families who have an adult son or daughter with mental retardation. In Phase l (Years 1-5), contrary to our hypotheses, we discovered unexpectedly favorable levels of personal well- being in the mothers, an absence of elevated levels of family distress, and a pattern of effective adaptation and accommodation to the needs of a family member with lifelong disabilities. However, the transition from maternal to non-maternal care is fraught with complexity for the mothers, particularly related to the loss of the central parenting role. Preliminary analyses of these data, based on the small number of cases who have placed thus far, suggest that the catalytic factors which propel placement and the protective factors which forestall it warrant continued longitudinal investigation. Four waves of data have been collected during Phase l. A supplement to our current award to support a fifth wave of data collection during the final year of the current project period has received full funding. This new application will support Waves 6, 7, and 8, resulting in a full data set of 8 waves over a 10-year period. The methodology proposed for Phase ll is consistent with that used successfully during Phase I. We will conduct in- person interviews with mothers and fathers at 18 month intervals, and a mailed survey of adult siblings of the person with retardation. The project will yield an unusually rich and complex data set, with respect to repeated waves of data collection, the number of participating families, the availability of multiple respondents in each family, and of a duration necessary to observe short-term and long-term changes in adults with retardation and their families. By the end of Phase ll, we estimate that at least 200 of the 461 families will have experienced the transition from maternal to non-maternal care, a sufficiently large number to model the dynamics of changes that accompany old age in families of adults with retardation. To this end, the proposed study examines (l) the antecedents and consequences of the transition to non-parental caregiving, (2) the effects of lifelong caregiving on the family as a unit and on each individual, and (3) the influence of normative life stressors on caregiving capacities within the family.