More than 2 million adults with Alzheimer?s disease and related dementias in the United States never receive a formal diagnosis. For those who do, the diagnosis of Alzheimer?s disease often occurs late; 2-5 years after symptoms are first exhibited. With more than 70% of people with Alzheimer?s disease living in the community and receiving care and support from their family, there is a tremendous psychological, physical, and financial burden of the syndrome borne by family caregivers. This burden may be exacerbated by a delayed diagnosis of Alzheimer?s disease or related dementia. In the earliest stages of Alzheimer?s disease, family members of older adults may attribute the cognitive, functional and psychological symptoms of the syndrome to ?normal? aging. Also, family members may not notice their changing role as they take on more and more caregiving responsibilities, leaving them vulnerable or unprepared for the upcoming caregiver role. Early detection of Alzheimer?s disease through screening may enhance the family member?s transition to a family caregiver and reduce caregiver burden by providing an opportunity for the family member to learn about the syndrome, receive interventions, and to prepare for their new caregiving role. Alternatively, early detection by screening might trigger a process of role transition for the family member to a caregiver that evokes emotional and social costs that are too high given the lack of a cure. The risks and benefits of Alzheimer?s disease screening on older adults family members are unknown. We are proposing the Caregiver Outcomes of Alzheimer?s Disease Screening (COADS) trial, as the first study to examine the impact of Alzheimer?s disease screening on family members. We will also test the congruence of patient and family member (dyad) outcomes as a result of screening, and the impact of post-screening strategies on family member outcomes. This large randomized controlled trial will measure the risks (depression and anxiety) and the benefits (quality of life, caregiver preparedness and caregiving self-efficacy) of early detection of Alzheimer?s disease from screening by enrolling 1,800 dyads of older primary care patients and their family members.
Family caregivers of people with Alzheimer?s disease experience tremendous psychological, physical, and financial burden. It is unknown if identifying AD earlier through screening in primary care (PC) can reduce the burden of AD on family caregivers. We are proposing the first study to measure the benefits and harms of AD screening on family members of older adults and to measure how the risks and benefits vary between patients and their family members.
