Dementia: “Illness” Label Can Lower Mood
March 3, 2016
People who perceive dementia symptoms as an illness feel more negative than those who see it as an inevitable part of getting older, a new study indicates.
Research led by the University of Exeter looked at people who had recently been diagnosed with dementia, and encountered symptoms such as memory loss, difficulty concentrating or carrying out daily tasks. The study, supported by the Economic Social Research Council and the National Institute for Health Research, and by the European Regional Development Fund, found that people who saw these symptoms as an illness reported lower mood than those who saw it simply as part of the aging process.
Professor Linda Clare, of the University of Exeter, who led the study, said: “There’s a big emphasis on earlier diagnosis of dementia, but our evidence raises the crucial question of the extent to which giving a diagnostic label really benefits people. Some people do want their difficulties acknowledged with a diagnosis, but our research shows that many others understand what is happening to them as part of a normal process of ageing. For this group, we may be better targeting support and information based on their symptoms or the type of everyday difficulties they are having, rather than focusing on giving a diagnostic label. This is a relatively small study and we must now conduct further work to confirm this to ensure we are providing the best support in this crucial area of health diagnosis, which has enormous implications for how people adjust and cope with these changes in later life.”
The study, involving collaborators from Bangor and Cardiff universities and published in the Journal of Alzheimer’s Disease, looked at 64 people who had been given a diagnosis of mild to moderate Alzheimer’s Disease or dementia, and who took part in the Memory Impairment and Dementia Awareness Study. They completed interviews and questionnaires and in each case a family member or close friend was also interviewed. Despite the diagnosis, nearly two thirds of this group did not consider themselves to be “ill”, but saw the condition as a sign of ageing.
Those who considered themselves to have an illness had lower mood and described more emotional consequences including anger, sadness, embarrassment and a loss of confidence.
The paper, “I Don’t Think Of It As An Illness”: Illness Representations in Mild to Moderate Dementia, is published in the Journal of Alzheimer’s Disease, by Linda Clare, Catherine Quinn, Ian Rees Jones and Robert T Woods.
About the University of Exeter Medical School
The University of Exeter Medical School is improving the health of the South West and beyond, through the development of high quality graduates and world-leading research that has international impact.
As part of a Russell Group university, we combine this world-class research with very high levels of student satisfaction. The University of Exeter Medical School’s Medicine programme is ranked 11th in the Guardian University Guide 2016. Exeter has over 19,000 students and is one of the global top 100 universities according to the Times Higher Education World University Rankings 2015-16, positioned 93rd. Exeter is also ranked 7th in The Times and The Sunday Times Good University Guide 2016, 9th in the Guardian University Guide 2016 and 10th in The Complete University Guide 2016. In the 2014 Research Excellence Framework (REF), the University ranked 16th nationally, with 98% of its research rated as being of international quality. Exeter’s Clinical Medicine research was ranked 3rd in the country, based on research outputs that were rated world-leading. Public Health, Health Services and Primary Care research also ranked in the top ten, in joint 9th for research outputs rated world-leading or internationally excellent. Exeter was named The Times and The Sunday Times Sports University of the Year 2015-16, in recognition of excellence in performance, education and research. Exeter was The Sunday Times University of the Year 2012-13.
The Economic and Social Research Council (ESRC) is the UK’s largest funder of research on the social and economic questions facing us today. It supports the development and training of the UK’s future social scientists and also funds major studies that provide the infrastructure for research. ESRC-funded research informs policymakers and practitioners and helps make businesses, voluntary bodies and other organisations more effective. The ESRC also works collaboratively with six other UK research councils and Innovate UK to fund cross-disciplinary research and innovation addressing major societal challenges. The ESRC is an independent organisation, established by Royal Charter in 1965, and funded mainly by the Government.
The National Institute for Health Research
The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. The NIHR is the research arm of the NHS. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website.
NIHR supported this study through grant ES/L001853/1 ‘Improving the experience of dementia and enhancing active life: living well with dementia’.
ABOUT THE JOURNAL OF ALZHEIMER’S DISEASE (JAD)
The Journal of Alzheimer’s Disease is an international multidisciplinary journal to facilitate progress in understanding the etiology, pathogenesis, epidemiology, genetics, behavior, treatment and psychology of Alzheimer’s disease. The journal publishes research reports, reviews, short communications, book reviews, and letters-to-the-editor. Groundbreaking research that has appeared in the journal includes novel therapeutic targets, mechanisms of disease and clinical trial outcomes. The Journal of Alzheimer’s Disease has an Impact Factor of 4.151 according to Thomson Reuters’ 2014 Journal Citation Reports. The Journal is published by IOS Press.
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