A qualitative study of mealtime difficulties in patients with dementia who feed themselves

Background Caregivers looking after persons with dementia may often experience mealtime difficulties. This has been described in persons with severe dementia in the West. But data from Asian countries such as Sri Lanka is limited, and there has been less focus on problems associated with the care of people with mild or moderate dementia. Aims The aims of this study were to describe mealtime difficulties experienced by caregivers of individuals with dementia who feed themselves, and the responses by the caregivers to these problems. Methods A focus group discussion was conducted with the participation of twelve caregivers of individuals living with dementia who feed themselves and are receiving home based care. A pretested semi structured discussion guide was used. An abridged transcript was developed from the audio tape recording, transcribed notes and observations by the moderator. Braun and Clarke’s six step approach to thematic analysis was adopted in the analysis. Results The main themes identified were; problems experienced by the caregivers when preparing food, changes in quantity of food consumed, measures taken by caregivers to overcome mealtime difficulties and the emotional responses of the caregivers. Mealtime difficulties can lead to reduced intake as well as overeating. Voluntary overfeeding by the caregivers was observed. Modification of dining environment or use of adaptive utensils were not practiced. Emotional exhaustion among the caregivers, and humiliating or dishonouring the individuals with dementia were the maladaptive responses. Conclusions Some of the mealtime difficulties in individuals with dementia in the Sri Lankan setting differ from those described in international literature. Early recognition of difficulties and guidance on adaptive measures will enable independence for a longer period and better nutrition.