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Article Dans Une Revue BMC Geriatrics Année : 2020

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

Jenni Kulmala
  • Fonction : Auteur
Sandrine Andrieu
  • Fonction : Auteur
Miia Kivipelto
  • Fonction : Auteur
Shireen Sindi
  • Fonction : Auteur
Alina Solomon
  • Fonction : Auteur
Hilkka Soininen
Anna Rosenberg
  • Fonction : Auteur
Edo Richard
  • Fonction : Auteur
Tobias Hartmann
  • Fonction : Auteur
Pim Van Gool
  • Fonction : Auteur
Eric Moll Van Charante
  • Fonction : Auteur
Cathrien Beishuizen
  • Fonction : Auteur
Susan Jongstra
  • Fonction : Auteur
Tessa Van Middelaar
  • Fonction : Auteur
Lennard Van Wanrooij
  • Fonction : Auteur
Marieke Hoevenaar-Blom
  • Fonction : Auteur
Tiia Ngandu
  • Fonction : Auteur
Mariagnese Barbera
  • Fonction : Auteur
Francesca Mangialasche
  • Fonction : Auteur
Juliette Guillemont
  • Fonction : Auteur
Yannick Meiller
  • Fonction : Auteur
Bram van De Groep
  • Fonction : Auteur
Carol Brayne

Résumé

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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hal-03254498 , version 1 (08-06-2021)

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Nicola Coley, Alexandra Soulier, Jenni Kulmala, Sandrine Andrieu, Miia Kivipelto, et al.. Experiences of dementia and attitude towards prevention : a qualitative study among older adults participating in a prevention trial. BMC Geriatrics, 2020, 20 (1), ⟨10.1186/s12877-020-1493-4⟩. ⟨hal-03254498⟩
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