The families of older adults value early dementia risk information provided by clinicians, a study of their post-disclosure reactions shows. The knowledge may prompt them to change their own behavior and begin stepping into new care roles.
The researchers interviewed 70 partners of cognitively healthy adults who were shown Alzheimer’s disease risk estimates and amyloid-β PET scan results of their family member or friend. About 70% were spouses or significant others, 18% were children or siblings, and 12% were friends of the study subject.
Interviewees were asked whether they wanted to know the information about their family member’s dementia risk, their expectations of risk level, and their understanding of the scan results. They also were queried about the impact of the dementia risk information on their emotions, health behaviors and future plans, as well as on the perceptions of their family member’s or friend’s memory.
Partners said that they understood the cognitively unimpaired older adult’s dementia risk information and considered it valuable, the researchers found. Not surprisingly, favorable risk information prompted feelings of happiness and relief, while unfavorable information resulted in disappointment. Notably, partners of those at high risk said the information gave them a heightened awareness of the family member’s memory capabilities and prompted some to monitor their loved one for new cognitive changes, according to Emily A. Largent JD, Ph.D., RN, of the University of Pennsylvania Perelman School of Medicine.
Partners understood that the dementia risk information was not medically actionable due to a lack of disease-modifying therapies. But some interviewees said the knowledge led to changes in each partner’s health behaviors and future plans, Largent and co-authors wrote.
The takeaway: Clinicians who disclose Alzheimer’s disease dementia risk estimates and test results to cognitively unimpaired adults should also account for the needs and interests of not only the patient, but their family members, who may then step into a pre-caregiver role, the researchers concluded.
The study was published in the Journal of the American Geriatrics Society.