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      Experiences of dementia and attitude towards prevention: a qualitative study among older adults participating in a prevention trial

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          Abstract

          Background

          A better insight into older adults’ understanding of and attitude towards cognitive disorders and their prevention, as well as expectations and reasons for participation in prevention trials, would help design, conduct, and implement effective preventive interventions. This qualitative study aimed at exploring the knowledge and perceptions of cognitive disorders and their prevention among participants in a prevention trial.

          Methods

          Semi-structured interviews were conducted among the participants of a multinational randomised controlled trial testing the efficacy of a lifestyle-based eHealth intervention in preventing cardiovascular disease or cognitive decline in community dwellers aged 65+. Participants were probed on their reasons for participation in the trial and their views on general health, cardiovascular disease, ageing, and prevention. The subset of data focusing on cognitive disorders (15 interviewees; all in Finland) was considered for this study. Data were analysed using content analysis.

          Results

          Participants’ knowledge of the cause and risk factors of cognitive disorders and prevention was limited and superficial, and a need for up-to-date, reliable, and practical information and advice was expressed. Cognitive disorders evoked fear and concern, and feelings of hopelessness and misery were frequently expressed, indicating a stigma. Strong heredity of cognitive disorders was a commonly held belief, and opinions on the possibility of prevention were doubtful, particularly in relation to primary prevention. Family history and/or indirect experiences of cognitive disorders was a recurrent theme and it showed to be linked to both the knowledge of and feelings associated with cognitive disorders, as well as attitude towards prevention. Indirect experiences were linked to increased awareness and knowledge, but also uncertainty about risk factors and possibility of prevention. Distinct fear and concerns, particularly over one’s own cognition/risk, and high motivation towards engaging in prevention and participating in a prevention trial were also identified in connection to this theme.

          Conclusions

          Family history and/or indirect experiences of cognitive disorders were linked to sensitivity and receptiveness to brain health and prevention potential. Our findings may be helpful in addressing older adults’ expectations in future prevention trials to improve recruitment, maximise adherence, and facilitate the successful implementation of interventions.

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          Most cited references 31

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          Dementia prevention, intervention, and care

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            Effect of the Apolipoprotein E Genotype on Cognitive Change During a Multidomain Lifestyle Intervention

            The role of the apolipoprotein E (APOE) ε4 allele as an effect modifier in lifestyle interventions to prevent cognitive impairment is still unclear.
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              A systematic review of the public's knowledge and understanding of Alzheimer's disease and dementia.

              This paper reports findings from a systematic review of the literature on the general public's knowledge and understanding of dementia/Alzheimer's disease. The key purpose of the review was to evaluate existing literature with specific attention paid to conceptual and methodological issues and to key findings. Over a 20-year period, 40 published articles satisfied the inclusion criteria. Only 4 of these were qualitative and 5 were cross-national. The review revealed a lack of consistency across studies regarding how knowledge was operationalized, approaches to sampling, response rates, and data collection instruments used including validated scales. A consistent finding across the vast majority of studies was the only fair to moderate knowledge and understanding the general public had. The most common misconception was that dementia was a normal part of aging and there was a lack of clarity about at which point normal age-related memory loss problems become severe enough to indicate dementia. Knowledge of dementia was found to be particularly poor among racial and ethnic minority groups where several myths about causes of dementia were found. Findings point to the need for more educational and advocacy programmes on dementia to be developed particularly in low-income to middle-income countries.
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                Author and article information

                Contributors
                anna.rosenberg@uef.fi
                Journal
                BMC Geriatr
                BMC Geriatr
                BMC Geriatrics
                BioMed Central (London )
                1471-2318
                12 March 2020
                12 March 2020
                2020
                : 20
                Affiliations
                [1 ]GRID grid.9668.1, ISNI 0000 0001 0726 2490, Department of Neurology, , Institute of Clinical Medicine, University of Eastern Finland, ; Kuopio, Finland
                [2 ]GRID grid.11417.32, ISNI 0000 0001 2353 1689, LEASP, UMR 1027, INSERM/Université Toulouse III Paul Sabatier, , University of Toulouse, ; Toulouse, France
                [3 ]GRID grid.411175.7, ISNI 0000 0001 1457 2980, Department of Epidemiology and Public Health, , Toulouse University Hospital, ; Toulouse, France
                [4 ]Public Health Promotion Unit, Finnish Institute for Health and Welfare, Helsinki, Finland
                [5 ]GRID grid.4714.6, ISNI 0000 0004 1937 0626, Division of Clinical Geriatrics, Center for Alzheimer Research, Department of Neurobiology, Care Sciences and Society, , Karolinska Institutet, ; Stockholm, Sweden
                [6 ]GRID grid.449631.d, School of Health Care and Social Work, , Seinäjoki University of Applied Sciences, ; Seinäjoki, Finland
                [7 ]GRID grid.410705.7, ISNI 0000 0004 0628 207X, Neurocenter Finland, Neurology, , Kuopio University Hospital, ; Kuopio, Finland
                [8 ]GRID grid.9668.1, ISNI 0000 0001 0726 2490, Institute of Public Health and Clinical Nutrition, , University of Eastern Finland, ; Kuopio, Finland
                [9 ]Stockholms Sjukhem, Research & Development Unit, Stockholm, Sweden
                Article
                1493
                10.1186/s12877-020-1493-4
                7068959
                32164544
                © The Author(s). 2020

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100002341, Academy of Finland;
                Award ID: 291803
                Award Recipient :
                Funded by: VTR Kuopion Yliopistollinen Sairaala (FI)
                Award ID: 5772815
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/501100001665, Agence Nationale de la Recherche;
                Award ID: ANR-14-JPPS-0001-02
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/501100002347, Bundesministerium für Bildung und Forschung;
                Award ID: FKZ01ED1509
                Funded by: FundRef http://dx.doi.org/10.13039/501100001826, ZonMw;
                Award ID: 733051041
                Funded by: FundRef http://dx.doi.org/10.13039/501100004359, Vetenskapsrådet;
                Award ID: 529-2014-7503
                Award Recipient :
                Funded by: Stockholm Sjukhem Foundation
                Funded by: FundRef http://dx.doi.org/10.13039/501100008599, Alzheimerfonden;
                Funded by: FundRef http://dx.doi.org/10.13039/501100006129, Konung Gustaf V:s och Drottning Victorias Frimurarestiftelse;
                Funded by: FundRef http://dx.doi.org/10.13039/100011102, Seventh Framework Programme;
                Award ID: 305374
                Funded by: FundRef http://dx.doi.org/10.13039/100013278, EU Joint Programme – Neurodegenerative Disease Research;
                Funded by: FundRef http://dx.doi.org/10.13039/501100003125, Suomen Kulttuurirahasto;
                Funded by: Finnish Brain Foundation
                Funded by: FundRef http://dx.doi.org/10.13039/501100004756, Emil Aaltosen Säätiö;
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

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