Cognitive Impairment in Later Life: Understanding Lay, Professional and Memory Service User Perspectives

This thesis explores what a range of people know and understand about cognitive impairment. The research presented here also explores the language and terminology that people use when discussing cognitive impairment. In order to do so, a mixed methods design was employed, involving three related studies; a systematic review of the literature about knowledge and understanding of mild cognitive impairment (MCI), a questionnaire study exploring respondents’ knowledge and understanding of cognitive impairment, and an interview study building on the results of the questionnaire and exploring perceptions of cognitive impairment in-depth.
The systematic review included 30 studies; 20 qualitative articles and 10 survey studies. The questionnaire study received 417 responses predominantly from England, but including some international responses. Questionnaire respondents were drawn from six population groups: people living with cognitive impairment, care partners, younger adults, older adults, healthcare professionals, and dementia specialists. Twenty-one semi-structured interviews were conducted with representatives from each of these six participant groups.
The findings from these studies suggest that most participants were able to offer a definition of cognitive impairment, highlighting similar symptoms (focusing on memory problems) and causes (such as brain damage and ageing). Participants discussed cognitive impairment in the context of dementia and were uncertain as to whether the two were synonymous or different. Where participants felt that cognitive impairment and dementia were different, they were unable to articulate these differences suggesting that the boundaries between cognitive impairment and dementia are not clear to the wider population. Participants offered causation accounts and narratives which suggested both controllable and uncontrollable factors may play a role in cognitive health, but participants generally claimed that cognitive impairment was beyond an individual’s personal sphere of control.
Participants identified that professionals and the lay population used different language and labels when discussing cognitive impairment and most felt that MCI was not an acceptable or appropriate label. The use of the word memory in diagnostic services for cognitive impairment and dementia (such as memory clinic, memory assessment service) is challenged as this may contribute to the perception that cognitive impairment and dementia are conditions which are solely or primarily characterised by a memory impairment.
The results of the studies inform the development of an illness representation model of cognitive impairment, providing a framework on which to base future information resources, media messages and public health and awareness campaigns. This thesis has begun to address a key gap in the literature, considering the views of a range of populations about cognitive impairment. However, future research is needed to explore factors which influence perspectives about cognitive impairment and to consider whether these perspectives change over time and can be influenced by educational campaigns and information.