The incidence of both Alzheimer?s disease and related dementias (AD) and of breast cancer increases with age; thus, many older women with AD are faced with questions about breast cancer screening. Having AD impacts a woman?s life expectancy and their ability to participate in her medical decision-making about breast cancer screening. As a result, AD family caregivers are frequently involved in making decisions about mammography. Each year over 800,000 older women with AD receive screening mammography. Caregivers cite decision-making and procedures related to mammograms as particularly stressful and there is no data that mammography screening helps women with AD live longer or better. No randomized trials evaluating the benefits and harms of mammography screening include women with AD and current guidelines recommend not screening women with a life expectancy of <10 years. The rationale is that these women will not live long enough to experience the life prolonging benefits of mammography screening. Instead, screening these women can put them at risk for physical and psychological harm as a result of overdiagnosis, overtreatment, additional tests due to false positives, and the identification of clinically unimportant cancer. Conversely, while mammography screening may not help older women with AD live longer, it may help find breast cancers earlier when they are easier to treat. Therefore, it is important that women with AD and their caregivers have information to make an informed decision about screening. Decision aids have promise to improve the quality of medical decision-making for patients with AD and inform family caregivers about the risks, benefits, and choices about screening mammography in this population. Our team has created and evaluated a mammogram decision aid for use with caregivers of older women with AD. This decision aid includes specific information about the relationship between life expectancy with AD and benefit from mammograms, the impact of mammography on quality of life for older women with AD, and a recognition of the emotions and experience of caregivers when making decisions about mammography for a relative with AD. We are proposing the Decisions about Cancer screening in Alzheimer's Disease (DECAD) study, as the first study to test if an evidence-based decision aid for AD caregivers can support decision-making about mammography and improve the quality of medical decision-making about breast cancer screening. This large randomized controlled trial will recruit 426 dyads of older women with AD and a family caregiver from 24 primary care practices in central Indiana to test this decision aid.
As women age, their chances of developing Alzheimer?s disease and related dementias (AD) and breast cancer increases and many older women with AD must consider if they want to continue getting mammograms. Because AD impacts a women?s ability to participate in her medical decision making, many AD caregivers participate in decisions about mammography and find medial decision-making about cancer screening difficult given that the burdens and risks of having a mammogram and undergoing follow-up tests and treatment are significantly greater for older women with AD. We are proposing the Decisions about Cancer Screening in Alzheimer's disease (DECAD) study to test if an evidence-based decision aid about mammography screening can improve the quality of caregivers medical decision-making about mammogram in older women with AD.