Caring for a spouse or partner with Alzheimer's or related dementia can be a challenging task. Research launched this month looks to get data from around the country about the experience.
The Alzheimer's Foundation of America is running the online survey. It asks full-time primary caregivers who have a spouse or long-term partner with dementia to weigh in on their own well-being.
“What's their access to social support and intervention that's needed to assist caregivers?” said Charles Fuschillo, AFA’s president and CEO. “How are they functioning cognitively as they're caregiving for somebody they love? Are they taking care of themselves?”
The 30- to 45-minute online survey asks respondents about physical health, stress levels, depression, anxiety, fatigue and other aspects of day-to-day caregiving.
In 2025, there were approximately 197,000 unpaid family caregivers in Connecticut for people with Alzheimer's or other dementia, according to the Alzheimer’s Association. Nationwide, that number stands at 12.7 million.
As the population ages, the number of people with dementia, and people caring for them, is expected to grow.
“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,” Donna de Levante Raphael, AFA’s director of research, and the study’s principal investigator, said in a press release.
Some of these impacts are already known: One study found caregivers to a spouse with dementia had a 30% increase in depressive symptoms compared to caregivers that weren’t a partner or spouse.
Palliative care researcher and clinician Chetna Malhotra, with the Duke-NUS Medical School in Singapore, told Connecticut Public in April that spousal caretakers have even more intense feelings because of the close bond.
Fuschillo hopes the new survey's findings will help contribute to Alzheimer's and dementia research, and also better inform healthcare, support groups and policy efforts.
The survey, and more information, can be found on The Alzheimer's Foundation of America’s website.
