Experiences of Participation in a Multimodal Preventive Trial MIND-AD(MINI) Among Persons with Prodromal Alzheimer’s Disease: A Qualitative Study

INTRODUCTION: Alzheimer’s disease (AD) is one of the world’s leading public health challenges. One-third of AD cases are attributable to modifiable vascular and lifestyle-related risk factors. The Multimodal Preventive Trial for Alzheimer’s Disease, MIND-AD(MINI) a 6-month multinational parallel-group randomized controlled trial (RCT), targeted persons with prodromal AD and built on the positive outcomes from the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) trial. The intervention consisted of four main components of (i) physical exercise training program, (ii) nutrition guidance, (iii) cognitive training, and (iv) social stimulation, as well as (iv) monitoring of metabolic/vascular risk factors. AIM: The study aimed to explore and describe the experiences of participation in MIND-AD(MINI) among persons with prodromal AD. METHODS: This qualitative study was part of the larger MIND-AD(MINI) project. Eight participants were interviewed twice, before and after the intervention. The data was analyzed using qualitative content analysis. RESULTS: The results are presented as categories of (i) knowledge of AD and prevention, (ii) motives for study participation, (iii) experiences of the received information about the study, (iv) taking the decision to participate, (v) expectations on study participation, (vi) experiences of study participation and (vii) internal and external factors influencing study participation. CONCLUSION: The MIND-AD(MINI) was well-tolerated by the participants. At the beginning of the study, the number of tasks and visits was perceived as burdensome but was later well-tolerated. The participant’ knowledge about AD and prevention increased during the trial. Their motives for participating in MIND-AD(MINI) were described as both altruistic and self-beneficial. Health benefits from the study components, access to specialized medical care were identified as benefits. Managing the intensive flow of information was described a major challenge. The participants’ needs for personalized support during the trial stress the importance of applying a person-centered approach providing the preventive trials.