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Rehabilitation & Research Training Center on
Aging with Developmental Disabilities

Project Progress Summary

R7Aging with a Dual Diagnosis: Families of Individuals with Developmental Disabilities and/or
    Severe Mental Health Problems

Principal Investigator: Jan Greenberg, PhD
Co-Principal Investigator(s): Marsh Seltzer, PhD & Marty Wyngaarden Krauss, PhD


PROJECT PROGRESS REPORT

The following sections that need to be filled in and submitted to RRTCADD.

  1. RESEARCH PROJECT ACTIVITIES
    1. IRB Status
    2. Assessment Tools
    3. Recruitment Status
    4. Data Collection Status
    5. Project Modifications
    6. Results

  2. SCHOLARLY ACTIVITIES
    1. Publications
    2. Presentations
    3. Trainings
    4. Technical Assistance
    5. Grants Funded
    6. Recognition and Service

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PROJECT PROGRESS SUMMARY

Review of Literature
Hypotheses/Research Questions
Sample Population and Methodology
Data Collection and Measures
Data Analysis
Anticipated Findings and their Implications for Future Research
Research Activities
Scholarly Activities


PROJECT PROGRESS SUMMARY

Review of Literature


The purpose of this project is to conduct secondary analyses of data from two longitudinal studies of families of individuals with autism (R01 AG08768) and schizophrenia (R01 MH55928) to identify the challenges facing aging families who have an adult son or daughter with a dual diagnosis of a (DD and a severe mental health problem. Such families will be compared with similar families who have an adult child with a single diagnosis only (either autism or schizophrenia)

With as many as 35% of the population with DD estimated to have mental health problems, there is a need to understand the unique impacts of psychopathology on families in the context of aging with DD. Although several studies have compared aging families of individuals with either DD or a serious mental illness (Essex, Seltzer & Krauss, 1999; Greenberg, Seltzer, Krauss & Kim, 1997; Pruchno et. al, 1996; Seltzer, et al., 2001), our review of the literature revealed no study on aging families of individuals with dual diagnoses. Parents who have an adult child with a single diagnosis of a DD (including autism) or a mental illness face many overlapping caregiving challenges. with respect to many of the caregiving tasks that they must perform for their adult child.

Parents of adults with a dual diagnosis of a DD (i.e., intellectual disability or autism) and mental illness face additional challenges arising from the unique needs of the adult child, including: a) both cognitive and functional deficits, associated with DD, and the cyclical behavior problems in persons with mental illness; b) negotiating between different systems of care that are poorly integrated; and c) coping with stigma and the “wear and tear” effects of caregiving that may intensify when a child has a dual diagnosis (Cook, Hoffschmidt, Cohler & Pickett, 1992; Seltzer et al., 2001). Given these cumulative, unique challenges faced by parents whose child has a dual diagnosis, research is warranted for investigating the impact of caregiving on parental well-being, and the unique service needs of these families.

Although there is an emerging literature on family caregivers of adults with DD or schizophrenia, little is known about the experience of African American families. The existing research comparing whites and African Americans is inconclusive as to whether caring for a child with a serious mental illness is more distressing to one racial group than another (Picket, Vraniak, Cook, 1993; Song, Biegel & Milligan, 1997; Stueve, Vine & Struening, 1997). Few studies have investigated the experiences of caregiving burden in aging African American parents of adults with DD (Heller & Factor, 1988; Mitiades & Pruchno, 2002; Pruchno, et al., 1998), and no study has examined the experience of families of adult children with a dual diagnosis.

Theoretically, the proposed research is guided by Pearlin’s (1989) conceptual model, which has been applied to the study of family caregiving of elderly persons (Li, Seltzer & Greenberg, 1997; Pearlin, Mullan, Semple & Skaff, 1990) and adult children with disabilities (Greenberg et al., 1993). Pearlin's model focuses on the larger social and structural context in which the caregiving role is enacted. The characteristics of the family and person with the disability influence caregiving stressors, as well as the psychological and social resources available to deal with these stressors, and the well-being of parents. Most research on the experiences of families of persons with disabilities has focused on negative manifestations of the stress process, such as depression, but it is also important to examine the positive psychological well-being of parents. (Ryff, 1989). We propose to study both positive and negative indicators of psychological well-being, based on Lawton, et al.’s (1991) two factor model.

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Hypotheses/Research Questions


  1. What are the unique challenges (primary stressors of caregiving and secondary strains) faced by aging families of adults with dual diagnosis and how are the challenges distinct from those with a single diagnosis?
  2. Do aging parents of adults with a dual diagnosis have a more compromised profile of psychological, social, and physical well-being as compared with aging parents of adults with a single diagnosis?
  3. Do aging parents of adults with a dual diagnosis differ in their pattern of coping with the stresses and strains of caregiving and in the types of social support available? Do these coping strategies and social supports have different effects on aging parents of adults with a dual diagnosis versus a single diagnosis?
  4. What are the special challenges faced by African American aging parents caring for an adult child with a dual diagnosis?
We predict that aging parents of individuals with dual diagnoses will experience elevated levels of stress and caregiving strain and will have poorer well-being than parents of individuals with a single diagnosis (i.e., autism or schizophrenia). We also predict that their patterns of coping and social support may not protect them as well from the stresses and strains of caregiving as parents whose adult child has a single diagnosis.

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Sample Population and Methodology


The proposed secondary analysis will involve comparisons drawn from two ongoing NIH-funded longitudinal studies of families of individuals with either autism (R01 AG08768) or schizophrenia (R01 MH55928). Families of adults with schizophrenia (n=292) met two criteria when initially recruited: the mother was age 55 or older and the adult had a diagnosis of schizophrenia or schizoaffective disorder. The families of adults with autism were sampled from a larger study of families of adolescents and adults with an autism spectrum diagnosis (n=407). The sample used in the proposed project will be limited to mothers who have an adult child with autism age 18 and older (n=219).

The two studies used identical recruitment strategies. All sample members are volunteers. Mothers participate in a series of in-home interviews and complete a set of measures (described below). Data are collected from each family every 18 months, with three rounds of data collection for each study.

We propose to conduct two parallel lines of analysis comparing: (1) aging family caregivers of adults with a primary diagnosis of autism and a secondary mental health diagnosis (n=68) to families in which the adult has a single diagnosis of autism (n=151), and (2) aging parental caregivers of adults with a primary diagnosis of schizophrenia and a secondary diagnosis of DD (n=51), to families in which the adult has a single diagnosis of schizophrenia (n=241). In the schizophrenia study, fourteen African American parents have a child with schizophrenia and DD, and twenty-one African American parents have a child with a single diagnosis of schizophrenia. These families provide the opportunity to conduct exploratory analyses on the needs of African American families caring for a child with a dual diagnosis.

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Data Collection and Measures


Measures include demographics (gender, age, education, ethnicity, and employment status), caregiving stressor, other life stresses, secondary strains, and psychological and social resources. Outcomes are physical and psychological well-being.
Table R6 – 1: Reliability of Measures
Measures Reliability
Stressors
Amount of care a =.72, (Greenberg et al., 1993)
Behavior problems a =.77 (ICAP) (Bruininks, Hill, Weatherman & Woodcock, 1986)
Social strain (Finch, Okun, Barrera, Zautra, and Reich,(1989)
Role captivity a = .79 (Pearlin et al.’s ,1990)
Financial strains (single item)  
Resources
Mastery a =.85 ( Pearlin & Schooler's,1978)
Coping (problem, emotion focused) a =.86 and .79 (Carver, Scheier & Weintraub (1989
Dispositional optimism Life Orientation Test (Scheier & Carver, 1985)
Social support Antonucci's (1986) Social Networks in Adult Life
Marital satisfaction a= .96, test-retest = .84 , Marital Satisfaction Questionnaire for Older Persons, and an (Haynes et al., 1992)
Quality of the relationship a; alpha=0.91, Positive Affect Index (Bengtson & Black, 1973)
Informal caregiving support number of tasks for which other family/ friends help the adult child
Participation in support group Tessler (1992)
Use of formal services checklist of services received
Well-being
Caregiving burden a Zarit Burden Scale (Zarit, Reever & Bach-Peterson, 1980)
Caregiving gain a .78 (Pearlin et al., 1990)
Physical health conditions, symptoms, health status, health relative to others, health risk and health maintenance behaviors
Psychological well-being Ryff's (1989) measures of psychological well-being.
Depression CES-D (Radloff, 1977)

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Data Analysis


Two primary analytic strategies will be used to investigate the research questions and hypotheses: 1) cross-sectional ANOVA and MANOVA analyses to identify challenges faced by aging families of adults with dual diagnoses, and to examine differences between aging parental caregivers of adults with a dual diagnosis vs. aging parental caregivers of adults with a single diagnosis on psychological and social resources, and physical and psychological well-being; and 2) regression analysis and structural equation modeling to estimate the differential effects of stressors and resources on parental well-being and to examine invariance across the diagnostic groups.

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Anticipated Findings and their Implications for Future Research


The proposed research will be the first to describe the lives of aging families whose adult child has a dual diagnosis, to analyze their unique needs and challenges, and to identify patterns of vulnerability and resilience. We will generate implications for service provision relevant to this large but unstudied group of older caregiving families, and will use the results to guide the development of a new line of original data collection designed to elucidate gaps in our understanding of the needs of such families. In addition, the results of the exploratory analysis of the African American caregivers will be used to generate hypotheses for a larger scale study of African American parents of adults with dual diagnoses In year 3, we will meet with service providers in Milwaukee County to recruit a sample of 50 African American families. Our goal is to use this project to enhance the quality of lives of such families and of the individuals with the dual diagnosis.

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Research Activities


IRB Status
Active Protocol # SE 2003-5735 & 04-01-06

Tools Being Adapted

Not Applicable.

Recruitment Status
Not Applicable.

Data Collection Status
Not Applicable.

Project Modifications
Project has been modified. For the substudy of persons with autism and a severe mental illness, we have had to delay the analysis of the data until the completion of the fourth wave of data collection on the autism study. In our original proposal, we planned to select the sample for the secondary data analysis based on data collected during the first wave of the study. However, in analyzing the first wave of the data, we discovered that we needed additional information to determine the validity of the diagnostic categories. These additional questions were added to the fourth wave of data collection. The fourth wave of data collection is nearing completion (about 90% of the interviews have been completed. Once these interviews are completed we will have much better diagnostic data to draw our samples for the analyses proposed in the original grant. No other modifications have been made to the study.

Project Progress to Date
A case control design was used to compare aging mothers caring for an adult son or daughter with a dual diagnosis of schizophrenia and intellectual disabilities to aging mothers caring for an adult child with schizophrenia but without intellectual disabilities. Of our 292 interviews with mothers of adults with schizophrenia, 24 (15 sons and 9 daughters) mothers indicated that the child had an intellectual disabilities, in this case mostly mild mental retardation. We attempted to match each of these 24 mothers with three mothers who participated in our study who was caring for a child with schizophrenia but who did not have an intellectual disability. The cases were matched on the mother=s age (within 5 years), marital status, and race, and the gender of the adult child and whether the child co-resided with his/her mother or not. Each dual diagnosis case was matched with three control cases to increase our power to detect differences!

The three African American mothers caring for a son with a dual diagnosis had very similar characteristics, and we did not have a sufficient number of African American control cases to develop a separate match for each of these mothers. We treated these three cases as a block with two matching African American mothers caring for a son with schizophrenia but who did not have an intellectual disability. Thus, the case control design had 22 separate blocks, with a block representing a mother caring for a child with a dual diagnosis (except for the African American cases) and three matching mothers caring for an adult child with schizophrenia but who did not have an intellectual disability. The mothers in both groups were on average 68 years old and approximately 60% per married. With respect to education, approximately 46% of the mothers of adult children with a dual diagnosis had some college education compared to approximately 54% of the mothers of adults with schizophrenia only. About one-quarter of the mothers of adults with a dual diagnosis were working compared to 31% of the mothers of adults with schizophrenia but who did not have an intellectual disability.

The adult sons averaged 37 years old, about three years younger than the adult sons with schizophrenia who did not have an intellectual disability, not a significant difference. The majority of sons coresided with their parents. ith respect to other diagnoses, there was a trend for sons without an intellectual disability to be more likely to have a diagnosis of bipolar disorder.

The adult daughters averaged approximately 40 years old. Only 11% coresided with their parents. The two groups of adult daughters were similar in terms of their marital status and whether they had children. However, whereas 22% of the adult daughters who had schizophrenia but no intellectual disability also had a diagnosis of alcoholism, none of the daughters with a dual diagnosis had an additional diagnosis of alcohol or drug abuse. As in the case of the adult sons, adult daughters with schizophrenia but no intellectual disability were more likely to have bipolar disorder, although this was not statistically significant given the small sample size.

Our first question was: Do aging parents of adults with a dual diagnosis have a more compromised profile of psychological and physical well-being as compared with aging parents of adults with a single diagnosis? We examined both indicators of distress as well as indicators of positive psychological well-being. The indicators of distress were caregiver burden, depressive symptoms, and anxiety, and indicators of positive well-being included Carol Ryff=s psychological well-being scale, optimism, and self-esteem.

We found that the experience of having an adult child with a dual diagnosis on maternal well-being depended on the child=s gender. Mothers of sons with a dual diagnosis reported higher levels of burden than mothers of sons with a diagnosis of schizophrenia but no intellectual disability, whereas mothers of daughters with a dual diagnosis reported slightly lower levels of burden. A similar pattern is found with respect to anxiety, however, it is the mothers of daughters with a dual diagnosis who report substantially lower levels of anxiety than the mothers of daughters with schizophrenia. Although there was no significant differences between the two groups of mothers in levels of depression, mothers of sons with a dual diagnosis had slightly elevated levels of depression in relationship to mothers of adult sons with a schizophrenia, but there was no difference between the two groups in levels of depression between mothers of daughters. A similar pattern was found for measures of positive well-being. Mothers of sons with a dual diagnosis reported lower levels of well being than mothers of sons with schizophrenia but there was only a small difference between the groups of mothers of daughters with disabilities. There also was a significant gender by diagnostic group interaction for self-esteem. Again, mothers of sons with a dual diagnosis had lower self-esteem than mothers of sons with schizophrenia but who had no intellectual disability. Mothers of daughters with dual diagnosis had slightly higher levels of self-esteem relative to mothers of daughters with schizophrenia. There a trend for parents of adult children with a dual diagnosis to be less optimistic than parents in the comparison group. Although the interaction is not significant, the significant main effect appears due to difference to the fact that mothers of sons with a dual diagnosis had lower levels of optimism than mothers of son with ! schizophrenia.

A similar patterns of findings emerged when we looked at health problems. Mothers of sons with a dual diagnosis reported on average 2 additional health problems than mothers of sons with schizophrenia. There was a much small difference in the number of health problems between mothers of daughters in the two groups. Turning to our second research question, we sought to explore to what extent these differences in well-being might be explained by differences in the caregiving context. We looked at differences in the amount of help the mother provided, the presence of behavior problems including negative symptoms of schizophrenia, and the extent to which the mother felt like she was walking on egg shells in public or private around her child. The interaction between gender and diagnostic group was either significant or showed a trend effect for all the indicators of the caregiving context. Mothers of sons with a dual diagnosis provided more assistance with activities of daily living than did mothers of sons who had schizophrenia but no intellectual disability. These mothers also reported their sons had higher levels of behavior problems and negative symptoms than mothers who sons with schizophrenia only. These mothers also reported that they were more likely to feel like they were wal! king on egg shells. Except for caregiving assistance, the comparison of daughters with a dual diagnosis to daughters with schizophrenia produced the mirror image of the pattern found with sons. Mothers of daughters with a dual diagnosis reported their child had fewer behavior problems and negative symptoms, and these mothers were less likely to report feeling like they were walking on egg shells.

Finally, we examined whether the differences in well-being were due to these differences in caregiving context. We reran out analysis on well-being outcomes controlling for these differences in caregiving context, namely the amount of caregiving assistance, behavior problems, and negative symptoms. Upon controlling for these variables, the originally significant interaction between diagnosis and gender on caregiver burden and anxiety became non-significant and these controls reduced the original significant interaction effects of gender by diagnosis on positive psychological well-being and self-esteem to trend levels. These context variables had no effect on optimism. In summary, we found that a pattern of wear and tear@ characterized the caregiving experience of aging mothers caring for a son with a dual diagnosis of mental retardation and schizophrenia. Relative to aging mothers caring for a son with schizophrenia but who did not have intellectual disabilities, mothers of sons with a dual diagnosis of schizophrenia and intellectual disabilities experienced elevated levels of caregiver burden and anxiety, and lower levels of positive well-being and self-esteem. They also faced many more caregiving challenges that parents caring for an adult child with schizophrenia. These mothers provided more care and reported that their sons had more behavioral problems and negative symptoms than mothers caring for an adult son with schizophrenia. This exploratory analysis suggests that aging mothers sharing a household with an adult son who has a dual diagnosis of schizophrenia and intellectual disabilities are a group at particularly high risk fo r experiencing the deleterious effects of caregiving. It is possible that the higher levels of negative symptoms and behavior problems in adult sons with a dual diagnosis reflect underlying differences in the course of schizophrenia when an intellectual disability is superimposed on schizophrenia. The increase in symptoms may be a product of the high rates of alcohol abuse in our sample of adults with a dual diagnosis of schizophrenia and intellectual disabilities. The prevalence of alcohol use in persons with mental retardation but who do not have a psychiatric diagnosis is very low. In our study, a third of the dual diagnosed sons had a diagnosis of alcohol and drug abuse. It is likely that the challenges for aging parents of adults with schizophrenia and intellectual disabilities are multiplied many fold when problems with alcohol abuse are present.

In contrast, aging mothers of daughters with a dual diagnosis and aging mothers of daughters who had schizophrenia but who did not have an intellectual disability showed a quite similar psychological profile. It was only with respect to anxiety that they differed, with aging mothers caring for a child with a dual diagnosis of ID and schizophrenia showing the lowest levels of anxiety. However, aging mothers caring for a daughter with schizophrenia but no ID reported facing more caregiving stressors than aging mothers caring for a daughter with a dual diagnosis. We suspect these differences are due in large part to difference between the two groups in the use of alcohol and other drugs. Whereas only one mother with an adult daughter with a dual diagnosis reported that her daughter had a problem with drugs and alcohol, over a third of the mothers of daughters with schizophrenia reported that their daughter had a past or current problem with alcohol and drugs. We hope in fu! ture research with a larger sample to look at the impact of parental caregiving for a daughter with a dual diagnosis controlling for alcohol use. The adult sons averaged 37 years old, about three years younger than the adult sons with schizophrenia who did not have an intellectual disability, not a significant difference. The majority of sons coresided with their parents. ith respect to other diagnoses, there was a trend for sons without an intellectual disability to be more likely to have a diagnosis of bipolar disorder. We recognize that any conclusions must be very tentative given the very small sample size and the exploratory nature of this study. Yet, this exploratory study offer considerable evidence that aging mothers caring for a son with a dual diagnosis of schizophrenia and an intellectual disability are a caregiving group at considerable risk and in need of targeted and specialized services to help them cope with the multiple challenges that they face.

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Scholarly Activities


Publications
  • Greenberg, J.S., Seltzer, M.M., Brewer, E. (in press). Caregivers to older adults. In B. Berkman & S. D’Ambruoso (Eds.), The Oxford Handbookook of Social Work in Aging. Oxford University Press.
  • Seltzer, M. M., Shattuck, P. , Abbeduto, L., & Greenberg, J. (in press). The trajectory of developments in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews.
  • Parish, S.L., Seltzer, M.M., Greenberg, J.S., & Floyd, F. J. (in press). Economic implications of caregiving at midlife: Comparing parents of children with developmental disabilities to other parents. American Journal of Mental Retardation.
Presentations
  • Greenberg, J.S., Seltzer, M.M., Kovac, K.K., & Hong, J. (2004, November). Aging with a dual diagnosis: Families of individuals ith intellectual disabilities and schizophrenia. The Gerontological Sociaty of America, Wasington, DC.
  • Seltzer, M.M., Lounds, J., Floyd, F., Greenberg, J.S., & Hong, J. (2004, November). The effect of IQ discrepancies on siblings in midlife. The Gerontological Sociaty of America, Wasington, DC.
Training/Workshops

Technical Assistance

Grants Funded
NIMH Predoctoral Training Program in Family Caregiving and Mental Health Services. University of Wisconsin-Madison. (September 2004 to present). Approximately $420,000.
Recognition and Service
Greenberg, J.S. Advisory Member CSWE/NIMH Predoctoral Training program for minority scholars.
Greenberg, J.S. Member, Program Committee of the Hartford Doctoral Fellows Program. The Gerontological Society of America. October, 2003 to present.
Greenberg, J.S. National Mentor, Hartford Faculty Scholars Program. The Gerontological Society of America. October, 2001 to present.
Greenberg, J.S. Member, NIMH Small Business Innovation Research Review Committee.

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