Alzheimer's Disease, Caregiving, and Social Networks

This study has been completed.
Information provided by (Responsible Party):
National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) ) Identifier:
First received: December 21, 2011
Last updated: November 11, 2014
Last verified: July 2014


- Most studies on Alzheimer's disease (AD) focus on the primary caregiver. More research is needed on how the disease affects the broader family network. Researchers want to study caregiving in a family social network. This framework will consider how all family caregivers adapt to their roles.


- To study how multiple family members provide care for a person with AD.


  • Family members who are caring for a person with AD.
  • Participants will be drawn from a specific Alzheimer s care facility.


  • Participants will be at least one caregiver and one family member who provides care indirectly (e.g., supports the caregiver). The study will try to include at least one biological family member and at least one nonbiological member (e.g., spouse). This will allow researchers to compare levels of perceived family health history risk.
  • Family members will complete face-to-face or phone interviews. These interviews will ask about caregiving stress and concerns.
  • Other family members may be contacted for further surveys.
  • Participants will receive a $25 gift card after they finish the survey.

Alzheimer's Disease

Study Type: Observational
Official Title: Alzheimer's Disease, Caregiving, and Social Networks

Resource links provided by NLM:

Further study details as provided by National Institutes of Health Clinical Center (CC):

Primary Outcome Measures:
  • Develop measures of caregiving processes, identify family network characteristics associated with positive adaptation, and investigate the role of perceived AD risk in caregiving and social support processes.

Estimated Enrollment: 130
Study Start Date: December 2011
Detailed Description:

Recent genomic advances in Alzheimer s disease (AD) have identified genetic factors that unavoidably concern biological family members of AD patients. For family members who are already experiencing distress associated with caregiving, genetic risk information about AD may be a source of strain and additional distress. Thus, recognition of increased genetic AD risk may influence caregiver well-being, social relationships, and the standard of care that they provide to the AD patient. Previous AD caregiving studies have not considered AD risk as a possible stressor for caregiving families; the current project will fill this gap in the literature.

Biological family members of AD patients need to adapt to their increased risk of developing AD in their lifetime and the strain of providing care to their affected relative as he/she negotiates the struggles of daily living. The social support network surrounding at-risk relatives and caregivers is likely to influence coping processes. Additionally, the social context of caregiving surrounding AD patients impacts the health and well-being of the patients, their caregivers, and other family members.

Since caregiving research has traditionally focused on primary caregivers, in this study we will employ social network methodology to examine the social contexts that surround families of AD patients and the interplay among network members. Information regarding participants beliefs and perceptions about AD as well as caregiving, and caregiving/support network systems will be assessed through one time interview or survey. We aim to recruit at least 120 participants through an Alzheimer s residential and daycare center in Memphis, TN. We will interview multiple adult family members of AD patients, including biological relatives of the patient and non-biological relatives (i.e. spouses), as well as staff members at this facility and integrate their responses to construct the caregiving and support network systems.

The current project will develop, adapt, and evaluate commonly used measures of caregiving roles using a social network framework. In so doing we will evaluate the psychometric properties of the newly developed and adapted measures. Using these measures, 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. The moderating role of family members perceptions of AD risk, which is likely to depend on family history of AD, on these social and coping processes will also be considered.

Findings will guide future research to develop network-based interventions aimed at promoting positive adaptation to the presence of AD in families through improvement of their social environment.


Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No

Family members of the individuals affected by AD or related dementia, informal caregivers of the affected individual, caregivers family members, and formal caregivers at the recruitment sites who are identified as part of patients caregiving networks will be eligible for recruitment in the study. Because the focus of this study is family involvement in the caregiving process, family members of both the individual affected by AD and his/her informal caregivers will be recruited. Family members include both biological and non-biological (i.e. step or adopted) family members. We will recruit both male and female adult family members and formal caregivers (ages 18 years or older). Families and individuals will not be excluded based on their race, ethnicity or cultural background.


Individuals affected by AD will not be interviewed and family members with physical, cognitive, mental, or emotional difficulties will be excluded from the study. In addition, fluency in English will be needed to complete interviews as well as to read, comprehend, and sign written consent forms, as appropriate validated measures in other languages are not readily available.

  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01498263

United States, Maryland
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, United States, 20892
United States, Tennessee
University of Memphis
Memphis, Tennessee, United States
Sponsors and Collaborators
Principal Investigator: Laura M. Koehly, Ph.D. National Human Genome Research Institute (NHGRI)
  More Information

Responsible Party: National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) ) Identifier: NCT01498263     History of Changes
Other Study ID Numbers: 999912022, 12-HG-N022
Study First Received: December 21, 2011
Last Updated: November 11, 2014
Health Authority: United States: Federal Government

Keywords provided by National Institutes of Health Clinical Center (CC):
Family Systems
Alzheimer Disease
Family History
Alzheimer's Disease

Additional relevant MeSH terms:
Alzheimer Disease
Brain Diseases
Central Nervous System Diseases
Delirium, Dementia, Amnestic, Cognitive Disorders
Mental Disorders
Nervous System Diseases
Neurodegenerative Diseases
Tauopathies processed this record on June 28, 2015