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Alzheimer's Disease, Caregiving, and Social Networks


Most studies on Alzheimer's disease (AD) caregiving focus on the primary caregiver. More research is needed on how the disease affects the broader family network. In this study, researchers will examine caregiving in a family social network to consider how all family caregivers adapt to their roles. At least one caregiver and one family member who provides care indirectly (e.g., supports the caregiver) will be surveyed. Researchers will also compare levels of perceived family health history risk.

Minimum Age Maximum Age Gender Healthy Volunteers
18 Years 118 Years All Yes
December 6, 2011

  • Family members (biological and nonbiological) of individuals with AD or a related dementia; informal caregivers; caregivers' family members; and formal caregivers
  • Fluent in English

  • Unable to complete the survey and interviews
  • Fever or signs of acute infection
  • Have been hospitalized in the past 3 months
  • Women who are pregnant or nursing
  • Staff of National Human Genome Research Institute

For biological family members who are experiencing distress related to caregiving, information about genetic risk for AD may be a source of additional distress. Recognition of increased genetic risk may influence caregiver well-being, social relationships, and the standard of care they provide to the person with AD. Previous AD caregiving studies have not considered AD genetic risk as a possible stressor for caregiving families; the current project will fill this gap in the literature.

The social support network surrounding at-risk relatives and caregivers is likely to influence coping processes. Additionally, the social context of caregiving surrounding AD impacts the health and well-being of the person with AD, his or her caregivers, and other family members. In this study, we will employ social network methodology to examine the social contexts that surround families of individuals with AD and the interplay among network members. Specifically, we will evaluate the structural and functional characteristics of the caregiving and support networks of AD families and how these network characteristics are associated with caregiving strain and well-being.

We aim to recruit at least 3300 participants through an Alzheimer's residential and day care centers, advocacy groups, and the NIH Clinical Center. We will interview multiple adult family members, including biological and nonbiological relatives (i.e. spouses) of the people with AD, as well as staff members at this facility.

Name City State Zip Status Primary Contact
National Institutes of Health Clinical Center, 9000 Rockville Pike
Bethesda Maryland 20892 Recruiting

National Human Genome Research Institute (NHGRI)

Name Role Affiliation
Laura M. Koehly, PhD Principal Investigator National Human Genome Research Institute (NHGRI)

Name Phone Email
Mindy J. Perilla 866-585-7192
Laura M. Koehly, PhD 301-451-3999


Inherited Diseases, Caregiving, and Social Networks