William & Mary

College research center to study how families cope with Alzheimer's

The Center for Public Policy Research of the Thomas Jefferson Program in Public Policy at the College of William and Mary is pleased to announce that researcher Christine Jensen has received a $25,000 grant from the Alzheimer’s and Related Diseases Research Award Fund (ARDRAF) to study the relationship between Alzheimer’s patients, their families and their doctors.

Through this study, “Promoting an Effective Partnership between Families Coping with Alzheimer’s Disease and Their Healthcare Providers,” Jensen hopes to identify the types of information and resources family caregivers and primary care physicians most need in order to strengthen the healthcare provider—caregiver partnership.

Jensen will gather data from both caregivers and healthcare providers. Individuals caring for a relative with dementia and/or Alzheimer’s disease who reside in the southeastern and south central areas of Virginia are invited to participate in a 15-minute phone survey. A toll free number is available for the convenience of participants. Interested parties should contact Christine Jensen at [[cjjens]] or (866) 397-3503. The survey is confidential and provides an opportunity for caregivers to help others who are dealing with the challenges of Alzheimer’s disease.

Research Findings:

Alzheimer’s and Related Diseases Research Award Fund Project: “Promoting an Effective Partnership Between Families Coping with Alzheimer’s Disease and Their Healthcare Providers"

Non-Technical Summary

The primary objective of this project was to determine the needs of family caregivers and healthcare providers who care for persons with memory loss. 128 caregivers from the study area participated with 64% completing the online version of the survey. The hypothesis that primary care physicians would be more likely to provide a diagnosis of Alzheimer’s disease than a specialist was not supported; however, it is imperative that the primary care physician be made aware of the diagnosis. Caregivers reported their primary source of information about the disease was the doctor; however, the majority reported that the doctor provided information about medications than about the course of the disease or available resources. Physicians and nurses who participated in the focus groups (n = 27) identified time to spend with patients and families, and awareness of community services were their biggest challenges.
These findings suggest a number of policy implications to address the identified health literacy issues and to strengthen the family caregiver – healthcare provider partnership. Proposed recommendations include:  1) Increase awareness of the local Alzheimer’s Association among medical professionals and family caregivers; 2) Enhance literacy of Alzheimer’s disease and related dementias through  training programs for family caregivers and for junior physicians, nurses, and ancillary staff; 3) Raise awareness of the Certificate for Added Qualifications in Geriatric Medicine (available for physicians board certified in Family Medicine and Internal Medicine) and encourage support for the Geriatric Loan Forgiveness bill; 4) Encourage greater utilization of technology among healthcare providers to track the needs of persons with dementia; and 5) Expand clinical standards to include support for the health care triad in dementia care.