How do people with dementia make sense of their medications? An Interpretative Phenomenological Analysis study

Managing medication is complex and multifaceted for people with dementia and their family carers. Despite efforts to support medication management, medication errors and medication-related hospital admissions still occur. This study investigated how people with dementia viewed and talked about their different medications and their medication taking.

An interpretative phenomenological analysis (IPA) qualitative research design combining photo elicitation and in-depth interviews was used. People with a diagnosis of mild or moderate dementia took photographs of anything they viewed to be related to medication, with or without the help of family carers, over any two-day period. The photographs were then used as cues for subsequent in-depth interviews, which were analysed using IPA.

Twelve people with dementia were interviewed. Four themes encapsulated the experiences: (1) Medication as a lifeline, (2) Managing medications dominates daily lives and plans, (3) Struggling with uncertainty about the effectiveness of dementia medication and (4) Sense of 'being' and being in control. People with dementia viewed medication as a lifeline, especially donepezil, giving it preference over other daily medication they were using. Managing medications dominated the daily lives and plans of people with dementia and changed the way they viewed themselves and their life. People with dementia continually struggled with the imperceptible benefits of donepezil on their dementia, but despite such uncertainties, continued to take donepezil.

This study provided unique insights into how people with dementia made sense of their medication. Healthcare professionals can use these insights to shape their practice around medication prescribing and advice in dementia. The findings are also useful to researchers looking to develop interventions to support medication management within the home setting.