Alzheimer's Disease Education and Referral Center

Alzheimer's Disease, Caregiving, and Social Networks

Alzheimer's Disease, Caregiving, and Social Networks

Overall Status: 
Completed
Brief Description: 

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.

Patient Qualifications: 
Min AgeMax AgeGenderHealthy Volunteers
18 Years
N/A
Both
Accepts Healthy Volunteers
Inclusion Criteria: 

  • Family members (biological and nonbiological) of individuals affected by AD or a related dementia; informal caregivers of the affected individual; caregivers' family members; and formal caregivers

Exclusion Criteria: 

  • Individuals affected by AD will not be interviewed.
  • Family members with physical, cognitive, mental, or emotional difficulties
  • Fluency in English

Detailed Description: 

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 interview or survey at least 120 participants through an Alzheimer's residential and day care center in Memphis, TN. 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.

Locations: 
Map Marker CityStateZip CodeStatusPrimary Contact

Geolocation is 39.0023604, -77.097455

Site
Bethesda
Maryland
20892
Name:
Phone:

Geolocation is 35.1495343, -90.0489801

Site
Memphis
Tennessee
Name:
Phone:
Lead Sponsor: 
Agency
National Human Genome Research Institute (NHGRI)
Collaborator Sponsor: 
Facility Investigators: 
NameRoleAffiliation
Laura M. Koehly, Ph.D.
Principal Investigator
National Human Genome Research Institute (NHGRI)
Study Contact: 
NamePhoneEmail
Andrea F. Goergen
(301) 443-8185
Laura M. Koehly, Ph.D.
301-451-3999
Locations
 
 
ClinicalTrials.gov ID 
NCT01498263 (follow link to view full record on ct.gov in new window)
Official Title: 
Alzheimer's Disease, Caregiving, and Social Networks
Study Start Date: 
December 2011
Study End Date: 
None given
Enrollment: 
120