Researchers in the Duke Department of Population Health Sciences recently explored an often-overlooked aspect of Alzheimer’s disease or related dementia: how an early diagnosis affects financial planning and economic stress for patients and their families.
In a study published in Alzheimer's Research & Therapy, a team led by Courtney Van Houtven, PhD, professor in population health sciences, examined how receiving results from amyloid PET scans, which detect amyloid plaques associated with Alzheimer’s disease, affects economic strain and financial decision-making among people with cognitive impairment and their caregivers.
The researchers analyzed data and in-depth interviews from the national CARE-IDEAS study, which followed Medicare beneficiaries with mild cognitive impairment or dementia who underwent amyloid PET imaging. They found no significant difference in economic strain between participants who received a positive amyloid PET scan and those whose scans were negative. However, regardless of scan result, participants overall reported greater difficulty paying bills 18 to 24 months after the scan than about four months after the scan.
The findings suggest that while an amyloid PET result alone may not increase financial hardship, receiving the results can provide an opportunity for patients and families to begin planning for future financial and caregiving needs.
“A lot of the economic research on Alzheimer's has focused on healthcare utilization costs over time,” Van Houtven said. “But we didn't have the perspective of self-reported information from caregivers and patients about what it was like for them month by month. Did they have trouble paying their bills? Did they have to go on Medicaid?”
Van Houtven described the diagnosis as a potential “teachable moment” for families to begin working with clinicians and other providers to consider long-term care needs, sources of support, and available financial resources.
“There's a real value to having an earlier diagnosis for cognitive impairment,” she said. “It gives people a chance to engage in financial decision making and really think about the future financial burdens that patients and their care partners are going to face.”
One limitation, Van Houtven noted, is that the study population was unusually affluent, predominantly White, and generally better positioned to absorb financial challenges than the average Medicare beneficiary.
“Even among this really affluent group, the study interviews revealed that they were feeling a lot of economic stress and strain,” she said, raising questions about whether families with fewer financial resources may face even greater challenges.