TY - JOUR
T1 - Experiences of dementia and attitude towards prevention: A qualitative study among older adults participating in a prevention trial
AU - Rosenberg, Anna
AU - Coley, Nicola
AU - Soulier, Alexandra
AU - Kulmala, Jenni
AU - Soininen, Hilkka
AU - Andrieu, Sandrine
AU - Kivipelto, Miia
AU - Barbera, Mariagnese
AU - Kivipelto, Miia
AU - Sindi, Shireen
AU - Solomon, Alina
AU - Andrieu, Sandrine
AU - Coley, Nicola
AU - Soininen, Hilkka
AU - Rosenberg, Anna
AU - Richard, Edo
AU - van Middelaar, Tessa
AU - Hartmann, Tobias
AU - Brayne, Carol
AU - Richard, Edo
AU - van Gool, Pim
AU - Moll van Charante, Eric
AU - Beishuizen, Cathrien
AU - Jongstra, Susan
AU - van Middelaar, Tessa
AU - van Wanrooij, Lennard
AU - Hoevenaar-Blom, Marieke
AU - Soininen, Hilkka
AU - Ngandu, Tiia
AU - Barbera, Mariagnese
AU - Kivipelto, Miia
AU - Mangialasche, Francesca
AU - Andrieu, Sandrine
AU - Coley, Nicola
AU - Guillemont, Juliette
AU - Meiller, Yannick
AU - van de Groep, Bram
AU - Brayne, Carol
PY - 2020/3/12
Y1 - 2020/3/12
N2 - 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.
AB - 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.
KW - Alzheimer's disease
KW - Cognitive impairment
KW - Dementia
KW - Family history
KW - Healthy ageing
KW - Older adults
KW - Prevention
KW - Qualitative research
KW - Randomised controlled trial
KW - Risk reduction
UR - http://www.scopus.com/inward/record.url?scp=85081910482&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s12877-020-1493-4
DO - https://doi.org/10.1186/s12877-020-1493-4
M3 - Article
C2 - 32164544
SN - 1471-2318
VL - 20
JO - BMC geriatrics
JF - BMC geriatrics
IS - 1
M1 - 99
ER -