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.


| INTRODUCTION
Dementia is a major global challenge. Worldwide, 46.8 million people live with dementia and this figure is projected to increase to 74.7 million and cost $2 trillion per annum by 2030. 1 In the United Kingdom, the prevalence of dementia is estimated to double from 850,000 to 1.6 million people and cost £94.1bn per annum by 2040. 2 The impact of dementia extends beyond economics and includes the health, social and emotional lives of individuals, their families and wider society. [3][4][5] More than 90% of people with dementia live with at least one other health condition 6 and with no cure for dementia on the horizon, medication plays a central role in managing the symptoms of dementia 7 and the treatment of other existing comorbidities.
Around 61% of people with dementia live at home 2 where medication is a part of daily living. As a result, people with dementia and family carers have developed their own strategies for managing medication. [8][9][10][11] There are also interventions to improve medication management, 12 primarily rationalising the prescribing of psychotropic medication. Managing medication, however, remains complex and multifaceted for people with dementia and family carers 10,11 and can lead to medication errors and medication-related hospital admissions. 13 Figures show adherence rates in this group range from 17% to 100%. 13 What is more, people with dementia are three times more likely to be hospitalised due to medication misadventure 14 and when discharged, they have a two to threefold increased risk of taking either 30% less or 20% more of their prescribed medication. 15 Arguably, empowering this patient group to better manage medication at home should be a priority for health practitioners.
To provide help that is useful to them, it is important to understand how people with dementia themselves, in addition to their family carers, make sense of all their prescribed medication, which in turn influences how they manage their medications within the home setting. Although there have been studies exploring how people with dementia talk and make sense of their diagnosis 16,17 and dementia medication, 18,19 there is a dearth of literature focusing on how people make sense of all their medications, within the context of a dementia diagnosis. Personal accounts of experiences provide an important perspective; they not only give people a voice but also provide an important perspective to inform the development of support structures to enable people with dementia to live well with medications. The aim of this study was to describe in-depth, how people with dementia viewed and talked about their different medications and their medication-taking, whether or not the medications were related to their dementia.

| Study design
An Interpretative Phenomenological Analysis (IPA) 20 qualitative research design combining photo elicitation 21 and in-depth interviews was used. Photo-elicitation is a qualitative interview technique widely used in psychology and some social science disciplines where researchers seek to explore and understand responses, perceptions, reactions, world view, and insights from participants by using photographs or other images as stimuli.
Pictures used as stimuli to obtain qualitative data can be researcher-generated or participant-generated and each has particular benefits and challenges. 22 Participant-generated pictures were used in this photo elicitation interview study. The rationale was to directly involve people with dementia in co-producing research about their experiences, without being directed by researchers or others about what to say. Interview transcripts were analysed to explore how people with dementia ascribe meaning to medications and their use of them. The epistemological stance of IPA is that it is possible to gain insight into an individual's cognitive inner world. A researcher using IPA does this through a thorough and systematic interpretation of the dataset, paying close attention to each person's unique detailed accounts. 20

| Participant selection
Participants on the Berkshire Healthcare NHS Foundation Trust Research Interested List (a list of people with dementia and caregiver volunteers who were interested in taking part in dementia research) that met the inclusion criteria (see Box 1 for details) were invited to participate in the study. Determining a sample size for this study that focused on lived experiences was not straightforward. 23 When deciding on sample size, we were guided by Geertz (1973), 24 Smith 20 Creswell (2012) 25 and Alase (2017)

| Setting
An experienced female qualitative researcher with a background in anthropology and health research (TS) conducted face-to-face interviews at each participant's home at a mutually suitable time.

| Data collection
The researchers had no prior relationship with any of the participants. Participants were co-creators of research knowledge; they were loaned a digital camera and asked to take photographs of anything (e.g., objects and places not limited to their own home) that they viewed to be related to medication and medicationtaking, over any two-day period. Verbal and written guidance were provided. The photographs were then used as cues for subsequent in-depth interviews 27 -see Box 2 for the interview topic guide and Supplementary Information S1 for an excerpt of the interview transcript with photographs. Interviews were digitally audio-recorded and transcribed verbatim. To ensure participants were comfortable, some interviews took place with the family carer present forming participant-carer dyads. In these interviews, we maintained our focus on encouraging participants to share their personal experiences but did not stop carers from participating in the interview had they wished to; carer contributions were generally limited to prompting or clarifying statements made by participants.

BOX 2: Interview topic guide
Warm up questions � How did you find using the camera?

| Participants
Interviews took place between January-May 2017. Twelve in-depth face-to-face interviews were conducted with people with dementia. Table 1 shows the participant characteristics.

| Interview findings
In-depth analysis of interviews using IPA generated four main I know that I wouldn't be probably as I am without the medicine I take on a daily basis. It's not a choice thing.
It's a necessity of life I guess, for me. So, I've accepted that and that's it.

Participant 9
As such, medication, specifically their dementia medication donepezil, was viewed as the primary help to manage dementia.
Participants acknowledged that donepezil was not a cure, but key in halting the deterioration of dementia. All knew that donepezil was to be taken for life because there is currently no cure. One participant made explicit her own diagnosis of dementia as a terminal condition. She talked about donepezil as part of palliative care.
Well until they can give you new brain cells, that's it really. All they can do is palliative, isn't it really? Participant 10    Despite the uncertain and imperceptible effects of donepezil, participants were determined to continue taking it; the risk of a deteriorating condition was too great.

Theme 4: Sense of 'being' and being in control
Participants showed insight when they talked about themselves as someone with a diagnosis of dementia. There was a strong sense of 'being'; they talked about being grateful for being alive and for their life.
Yeah, another day outside with the sun shining out there, thinking I'm lucky to be alive.

Participant 5
There was clear acknowledgement across all participants that they needed others to journey with them, living with dementia.
Several showed empathy towards their carer.
I mean it must be irritating at times when you've told me something and then you, half an hour later or perhaps an hour or two later you will say, well I told you that, and I'll say oh yes, sorry, yes, of course you did.

Participant 12
Participant: When you hear that large thumping noise in the bath which does not happen very often, but that's me falling over.
Carer: Oh well. But anyway, we can mention it to the doctor when we go next, we have already.
Participant: Well you've put up with a lot haven't you?

Participant 7
The relationship between the participant and carer was crucial in determining the participants' sense of self. Most participants had carers who were empathic, encouraging, patient and kind.

| Strengths and limitations
There is limited in-depth exploration of the lived experiences of people with dementia and specifically their views on medications.
Our original study adds to this body of knowledge through careful and sensitive elicitation of knowledge, co-produced with people with dementia. The use of pictures, taken by people with dementia, had a two-fold advantage. First, giving control to people with dementia to

| CONCLUSION
This study provided unique insights into the views of people with dementia in terms of their medication. Dementia medication, donepezil, was viewed as a lifeline despite its imperceptible effects and reflects the uncertainty of living with dementia. Healthcare professionals can use these insights to shape their current practice around medication prescribing and advice. Future work can focus on using these insights to inform intervention development work to support medication management within the home setting.