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.
Funding: The study was funded by Economic Social Research Council, National Institute for Health Research, European Regional Development Fund.
Source: Louise Vennells – University of Exeter
Image Credit: Image is adapted from the University of Exeter press release.
Original Research: Abstract for ““I Don’t Think Of It As An Illness”: Illness Representations in Mild to Moderate Dementia” by Linda Clare, Catherine Quinn, Ian Rees Jones and Robert T Woods in Journal of Alzheimer’s Disease. Published online February 27 2016 doi:10.3233/JAD-150794
Abstract
“I Don’t Think Of It As An Illness”: Illness Representations in Mild to Moderate Dementia
The self-regulatory model proposes that illness representations influence adjustment and coping in chronic conditions. Better understanding of the illness representations held by people with dementia could help with targeting information and support so as to optimize adjustment and coping. In this mixed-methods study of illness representations among people with mild to moderate Alzheimer’s, vascular, or mixed dementia we aimed to clarify the nature of the representations held, to determine whether specific profiles can be identified based on perceptions of the identity and cause of the condition, and to examine associations between these profiles and other participant characteristics. Data were collected in the second wave of the Memory Impairment and Dementia Awareness Study (MIDAS). Sixty-four people with dementia, who had been told their diagnosis at a memory clinic, completed interviews and responded to questionnaires. In each case a carer was also interviewed. Cluster analysis based on responses about identity and cause identified three profiles. ‘Illness’ cluster participants saw themselves as living with an illness and used diagnostic labels, ‘ageing’ cluster participants did not use diagnostic labels and viewed their difficulties as related to ageing, and ‘no problem’ cluster participants considered that they did not have any difficulties. ‘Illness’ cluster participants had better cognition and better awareness, but lower mood, and perceived more practical consequences, than ‘ageing’ cluster participants. Holding an ‘illness’ model may not be advantageous. Rather than encouraging adoption of such a model, it may be preferable to target information and select interventions in line with the person’s representation profile.
““I Don’t Think Of It As An Illness”: Illness Representations in Mild to Moderate Dementia” by Linda Clare, Catherine Quinn, Ian Rees Jones and Robert T Woods in Journal of Alzheimer’s Disease. Published online February 27 2016 doi:10.3233/JAD-150794
