Alzheimer's Disease, Caregiving, and Social Networks
- 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.
|Official Title:||Alzheimer's Disease, Caregiving, and Social Networks|
- 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.
|Study Start Date:||December 2011|
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.
Please refer to this study by its ClinicalTrials.gov 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|
|Principal Investigator:||Laura M. Koehly, Ph.D.||National Human Genome Research Institute (NHGRI)|