Search

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.

Health-care stakeholders increasingly recognize that the scientific and economic challenges associated with Alzheimer's disease (AD) are simply too great for individual stakeholder groups to address solely from within their own silos. In the necessary spirit of collaboration, we present in this perspective a set of multicountry multistakeholder recommendations to improve the organization of existing AD and dementia care and the development of new treatments. In brief, the five recommendations are (1) health-care systems must make choices regarding the patient populations to be diagnosed and treated, (2) health-care systems should use an evidence-based standard of care, (3) increased collaboration between public and private institutions is needed to enhance research, (4) reimbursement end points need to be agreed on and validated, and (5) innovative business models should be used to spur the introduction of new medicines., (Copyright © 2015 The Alzheimer's Association. Published by Elsevier Inc. All rights reserved.)

Understanding and appreciating the awareness of, and attitudes towards, Alzheimer's disease (AD) in the general public is of paramount importance to those charged with the development of health care policy. Furthermore, it is essential that this policy be formulated with consideration given to both the attitudes of the general population and to those within society more directly affected by AD; namely, the caregivers of patients with the disease. In the IMPACT survey, approximately 1000 members of the general public and 250 caregivers in 5 European countries (France, Germany, Italy, Spain, and the United Kingdom) completed a 30-minute, Web-based questionnaire. In this article, we compare and contrast the attitudes and opinions of these populations in an attempt to define specific themes. Indeed, caregivers were more concerned about consequences of growing old and were more fearful of AD than general public respondents, although a high proportion in both groups acknowledged the significant impact of the disease. Similarly, although most respondents in the 2 groups recognised that early signs and symptoms of AD are difficult to detect, caregivers were more skeptical of the abilities of both primary physicians and specialists to detect these early signs and symptoms. In terms of treatment, caregivers were less convinced of the effectiveness of treatment beyond the early stages of AD and more likely to agree that current treatments are associated with side effects. Respondents in both groups had a negative view of their government's investment in AD, but caregivers, particularly those in France, Spain and the United Kingdom, were more likely to feel that their government acts as a barrier to treatment. Some survey respondents from the 2 groups also had a negative view of their governments' attempts to raise awareness of AD and make its treatment a high priority. Overall, comparison of responses from these 2 groups suggests that caregivers' personal experiences of AD profoundly affect their attitudes and perceptions surrounding the disease.

Background: Alzheimer's disease (AD) impacts on persons with AD as well their families. This survey aimed to identify information/communication gaps, and quality of life and other issues, from both perspectives., Methods: Persons with AD and their families or other carers from Europe, Brazil, and North America completed telephone interviews. Responses were analyzed by country., Results: Five hundred two persons with AD and 614 carers were included. Issues important to persons with AD were treatment that helps control symptoms; feeling safe and supported at home; and ability to enjoy life. Most felt well-respected by family members. Families/carers considered a wider range of issues important, including detailed information about AD, regimens that are easier to comply with, and medication in a form that is easier to take. This reflects the fact that carers very often manage medications., Conclusions: This is the first global survey to include persons with AD themselves. Differences between responses from persons with AD and their caregivers highlight the importance of considering both viewpoints.