Caroline Rosenthal Gelman

Young Children in Early-Onset Alzheimer’s Disease Families: Research Gaps and Emerging Service Needs

Early-onset Alzheimer’s disease (EOAD), defined as affecting those under age 65, afflicts between 200,000 and 500,000 people in the US. EOAD tends to be a fast-progressing and aggressive form of AD. There is a beginning body of research exploring EOAD patients’ experience and needs, as well as that of their primary family caregivers, often spouses. However, there has been very little written about the experience and needs of EOAD patients’ children, who because of the early onset, and increasing postponement of childbearing, may be latency-aged or in their early teens. This paper reviews existing and related literature in this area, and illustrates the psychosocial impact on children using the case of a 50 year-old father diagnosed with AD and his 16 year-old daughter and 11 year-old son. The need for increased research and program development to address these children’s needs is discussed.

Familismo and its impact on the family caregiving of Latinos with Alzheimer's disease: a complex narrative.

Despite the long-held view that Latinos’ value and reliance on family leads to greater involvement of extended family in caring for sick members and reduced perception of burden, some research reports low levels of social support and high levels of distress among Latino caregivers. We explore this seeming discrepancy in a qualitative study of 41 Latino caregivers of family members with Alzheimer’s disease, interviewing them regarding the role of familism in their caregiving experience. For some it facilitates caregiving in the traditional, expected manner. Other caregivers disavow its current relevance. Yet others feel a contrast between familism, which they may value in a general, abstract way and more personal, immediate negative feelings they are experiencing from caregiving. We discuss these complex, multidimensional findings, the variation among caregivers, and present implications for practice, policy, and research.

Intervention Research With Minority Older Adults Challenges Encountered, Solutions Enacted, and Implications for Future Work

Minority older adults are the fastest-growing segment of the older adult population, and a disproportionate number have the greatest psychosocial needs. It is the need to understand and bridge existing racial and ethnic disparities that makes research with minority older adults so necessary. However, these very vulnerabilities may lead to ethical dilemmas in undertaking research with this population, particularly because for many minority older adults, interventions offered through research may be the only treatment option available. This article discusses this and other ethical issues that may arise in the development and implementation of research protocols with minority older adults. By presenting specific examples of research challenges encountered the authors aim to encourage discussion about the clinically and ethically responsible ways of anticipating, preparing for, and addressing ethical research with minority older adults in ways that foster research integrity, best serve study participants, and contribute to greater knowledge and understanding for bridging disparities.

Engaging Students in Gerontological Work Through Innovative Caregiving Programming: Introduction to Three Brief Reports

The number of Americans aged 65 and older is projected to increase from 35 million to 88.5 million in the first half of the 21st century. However, there is a serious gap between the number of health care and social service practitioners needed to work with the aging and the number available and trained to do so. The authors review current research on what works in engaging students in geriatric and gerontological work. The authors then present three projects from the Weinberg Caregiver Initiative as illustrations of innovative caregiver programming building on community-based partnerships which successfully incorporate aspects of best practices in gerontological education to increase student interest in work with the aging populations, while serving older adults and their caregivers.

In their own words: The experience and needs of children in younger-onset Alzheimer's disease and other dementias families

Because of the age of persons diagnosed with younger-onset Alzheimers disease or other dementias (YOD), an important and as yet relatively little explored area of YOD, particularly in the United States, is the impact on young children of having a parent with YOD. After reviewing the small but growing research in this area, we report on findings from 12 in-depth interviews with children and well-parents in families with a parent with YOD on the experience and needs of children having a parent with this diagnosis. Children report disruption in many aspects of their lives: their developmental trajectory, emotional and psychological development, familial and broader social relationships, and financial stability. Despite these significant disruptions, and a dearth of information, resources, and services tailored to their individual and familial needs, these children demonstrate remarkable resilience and self-awareness. We discuss implications for interventions with these families.

Brief Report #2: The Caregiver Ombudsman Outreach Program (Co-Op): Lessons Learned for Engaging Students and Impacting the Community

We discuss a program designed collaboratively by eight community-based agencies and a school of social work to serve ethnically-diverse caregivers of older adults in an under-resourced area of New York City. The program offered comprehensive assessments, referrals and information, and respite care to maximize use of existing resources and build a stronger web of support for caregivers. Social work and nursing students participated in all aspects of the project, including development, implementation, and evaluation. This level of involvement facilitates a deep understanding of the interconnections among practice, research, policy, and education, and fosters an interest in and commitment to working with older adults and their families.