Does universal health care affect attitude toward dementia?

Britons perceive greater societal stigma from diagnosis than do Americans

INDIANAPOLIS, 15 jan 2009 – A new study has found that in spite of their universal health care system which facilitates access to free dementia care, older adults in the United Kingdom are less willing to undergo dementia screening than their counterparts in the U.S. because the Britons perceive greater societal stigma from diagnosis of the disease than do Americans.

Researchers surveyed 125 older adults in Indianapolis and 120 older adults in Kent, England, on their opinions on the perceived harms and benefits of dementia screening. None of those surveyed had been diagnosed with dementia, however significantly more of the U.K. participants (48 percent) had close friends or relatives who have or had Alzheimer's disease compared to U.S. participants (27 percent).

The study of public attitudes toward early detection of dementia across different health-care systems was conducted by researchers from Indiana University in the United States and the universities of Kent and London in the United Kingdom. The research was funded in part by the U.S. National Institute on Aging, and appears in an advance online publication of the International Journal of Geriatric Psychiatry.

"From my prospective, it was a genuine surprise that having a universal health care system, which provides services and support to all those who need it, didn't protect from perceived stigma and negativity," said the study's corresponding author, Malaz Boustani, M.D., assistant professor of medicine at the IU School of Medicine and a Regenstrief Institute research scientist.

Even when taking into account education and race differences, Britons indicated greater concern with the stigma of diagnosis, with potential loss of independence, and with emotional suffering than their American counterparts.

"This study, which investigates the acceptance and societal stigma associated with dementia – something very difficult to track – provides us with a unique insight as Americans debate the pros and cons of universal health care," said study first author, Michael Justiss, Ph.D., assistant professor of occupational therapy, School of Health and Rehabilitation Sciences, Indiana University-Purdue University Indianapolis.

Dementia is a growing global public health problem in both countries leading to a high burden of suffering for society with an annual cost of $100 billion in the U.S. and $10 billion in the U.K.

"In spite of the fact that new strategies for both treatment and prevention of dementia are currently being developed, this study gives us an initial awareness so that we can develop improved care pathways for dementia. We hope the United Kingdom's Dementia Strategy published in the next few months will consider some of this study's findings," said Chris Fox, MB, BS of the University of Kent, who led the British researchers.

"This pilot study is the beginning, not the end. We need to do further exploration with a bigger sample, with different types of individuals. But this study which found deep concern about dementia screening despite access to health care services in U.K., clearly tells us that there are many issues we must explore as we attempt to retool the American health care system. We have to be careful not to put the horse before the cart as we debate national health care in the U.S.," said Dr. Boustani, who is also an IU Center for Aging Research center scientist. Dr. Boustani has written extensively on the dementia screening.

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Co-authors of the study include Christopher Callahan, M.D., Sui Hui, Ph.D., Greg Sachs, M.D., and Hugh Hendrie, MB, ChB of the IU School of Medicine, the Regenstrief Institute and the IU Center for Aging Research; Patrick Healey, M.D., at St. Vincent Hospital, Institute on Aging, Indianapolis; Cornelius Katona, M.D., of University College London and researchers at the University of Kent.