Alzheimer’s Foundation of America Launches Survey for Spouses of Dementia Patients

NEW YORK—The Alzheimer’s Foundation of America (AFA) has launched a national research study examining the impact caring for a spouse or partner with dementia has on physical and mental health, stress levels, brain function, social relationships and overall quality of life. 

AFA said its study aims to gather crucial, evidence-based data directly from spousal caregivers about how dementia caregiving affects them physically, emotionally and socially over time. Findings will help guide future programs, resources and policies to better support the millions of Americans caring for loved ones with dementia.

Despite the central role spousal caregivers play, their health outcomes remain understudied and underrepresented in research, AFA said. Most dementia research focuses on the person who is diagnosed. Far less data exists about the caregiver walking beside them—particularly spouses who are aging themselves, navigating emotional and health challenges while continuing to provide care.

More than 11 million Americans serve as caregivers to a loved one living with dementia, providing more than 18 billion hours of unpaid care, according to the Centers for Disease Control and Prevention (CDC). The demands of caregiving can have a significant impact on caregivers’ own health and well-being.

“Spousal caregivers devote tremendous amounts of time, energy and compassion to caring for their loved ones, sometimes at the expense of their own health,” said Charles J. Fuschillo, Jr., AFA’s president and CEO. “By participating in this study and sharing their experiences, caregivers will help provide crucial information needed to help improve support for families affected by dementia.”

“Our healthcare system has made remarkable advances in understanding Alzheimer’s disease, but there is a lack of quantifiable, evidence-based data on what caregiving does to the spousal caregiver,” said Donna de Levante Raphael, AFA’s director of research and the study’s principal investigator. “This research will help generate the evidence needed to improve care and support for millions of caregiving families.”

Eligible participants must:

• Be 21 years of age or older
• Serve as the full-time primary caregiver for a spouse or partner living with dementia
• Live in the United States
• Have access to the internet

Participation consists of a confidential online survey that takes approximately 30 to 45 minutes to complete. There are no in-person visits or travel requirements.

Individuals who provide or have provided care for a spouse with Alzheimer’s disease or another type of dementia can learn more or participate in the free online survey by clicking here.