‘If I had dementia, the things that might help me to eat include...’: Exploring findings from a massive open online course

Background

Maximising opportunities to enhance nutrition are a crucial part of providing care to people with dementia, since their risk of malnutrition is increased due to progressive symptoms. A person-centred approach to eating coupled with skilled caregivers is essential to minimise symptom burden, reduce dependence and maintain quality of life. The aim of this study was to explore perceptions of encouraging eating for those with dementia from responses to a discussion board within a free and openly accessible course: the Understanding Dementia Massive Open Online Course (UD-MOOC), which asks ‘If I had dementia, the things that might help me to eat include...’.

Method

A total of 3,651 participant discussion responses were collected from 2018 and 2019 course enrolments. Responses were analysed using structural topic modelling followed by secondary thematic analysis to develop meaningful themes to depict participant perceptions.

Result

The majority of participants were female, tertiary educated Australians over 50 years old. One third were paid caregivers. Thirteen topics were isolated from structural topic modelling, from which six major themes were identified: personalised food modifications (such as changes to texture, meal size and frequency of food offered), meal choice (including eating implements and providing food options), meal presentation (including sensory stimulation), eating environment (such as dining and social surroundings), eating assistance (with a focus on independence and encouragement) and end of life nutrition (such as eating safety and perceptions of tube feeding). Meal timing preference was seldom raised.

Conclusion

By exploring perceptions from a discussion board provoking a first-person stance, participants demonstrated diverse awareness of important aspects to encourage eating in dementia. Furthermore, the opportunity to explore perceived experience provided an understanding of what eating means to caregivers and how they may approach person-centred eating for people with dementia. In the context of previous research, the findings of this study suggest a gap between perceived best care strategies and practical application of these strategies. This supports the need to nurture opportunities that allow awareness to be implemented in practice and education programs that support current and future dementia caregivers.