Dementia: “illness” label may lower mood

North Walians have taken part in research which has just been published and indicates that people who perceive dementia symptoms as an illness feel more negative than those who see it as an inevitable part of getting older. ‌​‌​‌​​​‍‌​‌​​‌‌‌‍‌​‌‌​​‌​‍‌​‌‌‌​‌‌‍‌​‌‌‌‌​​

Research led by Professor Linda Clare, formerly of the School of Psychology and now at 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, 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, living in north Wales, 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 carer 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. ‌​‌​‌​​​‍‌​‌​​‌‌‌‍‌​‌‌​​‌​‍‌​‌‌‌​‌‌‍‌​‌‌‌‌​​

Co-author, Professor Bob Woods, from Bangor University’s Dementia Services Development Centre, comments: ‌​‌​‌​​​‍‌​‌​​‌‌‌‍‌​‌‌​​‌​‍‌​‌‌‌​‌‌‍‌​‌‌‌‌​​

“We need greater awareness of the different ways people with dementia cope with and adjust to their condition, so that we can tailor information, advice and support to the individual. One size does not fit all!’ ‌​‌​‌​​​‍‌​‌​​‌‌‌‍‌​‌‌​​‌​‍‌​‌‌‌​‌‌‍‌​‌‌‌‌​​

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 Bob Woods. ‌​‌​‌​​​‍‌​‌​​‌‌‌‍‌​‌‌​​‌​‍‌​‌‌‌​‌‌‍‌​‌‌‌‌​​