What Matters to Patients with Alzheimer's Disease and Their Care Partners? Implications for Understanding the Value of Future Interventions.

Alzheimer's Disease (AD) is the most common cause of dementia. Recent thinking portrays AD as a continuum consisting of three stages: an asymptomatic preclinical period, a mild cognitive impairment phase, and dementia, which can be further classified as mild, moderate or severe. While many studies explore the cognitive and functional aspects of AD, fully understanding AD pathophysiology, as well as the potential value of pharmacological and psycho-social interventions, requires a deeper understanding of patient and care partner priorities, particularly in the early stages where such interventions may have the greatest impact in slowing or delaying progression. Available studies highlight a diverse range of patient and care partner priorities, including impacts on their emotions, moods, and social lives. These priorities have not been systematically incorporated in the clinical and value assessments of potential interventions. We propose approaches to better understand the humanistic impact of AD including conducting additional research into the impacts of interventions from the point of view of patients and care partners, expanding notions of 'value' and improving health system capacity for diagnosis.
Competing Interests: Dr. Jessen reports personal fees from Biogen, during the conduct of the study. Mr. Georges is the Executive Director of Alzheimer Europe which receives grants and support for its activities from the EU health and research programmes and from private and public organisations and institutions. Mr. Wortmann has nothing to disclose. Ms. Benham-Hermetz is the Director of Policy and Public Affairs at Alzheimer's Research UK, which receives grants and support for its activities from private and public organisations and institutions. This work was inspired by an educational symposium at the ISPOR EU 2020 Conference. The symposium included a panel with FJ, SBH, and MW and was sponsored by Biogen. The title of the panel discussion was “Insights into potential patient and caregiver benefits of changing disease course in AD: a discussion on the non-economic values of future potential early intervention. Medical writing support for this paper was provided by Shift Health and was funded by Biogen. Shift Health consults with organizations across the health and life sciences sector, including Biogen. The authors (FJ, JG, MW and SBH) had full editorial control of the contents of the manuscript. Biogen conducted a courtesy review of this manuscript.