3.1 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.
58.3% (n=7) of the participants were male with a mean age of 75.2 years (standard deviation (SD) 9.1, range 60-89). Most participants had received a diagnosis within the previous 5 years (n=10, 83.3%). The mean MoCA score was 17.3 (SD 4.4, range 12-25). Two participants lived on their own. Interviews with participants lasted between 18 and 66 minutes (mean 35 minutes).
Table 1: Demographic details of participants (n=12)
Age (years)
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60-69
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4 (33.3%)
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70-79
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4 (33.3%)
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80-89
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4 (33.3%)
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Gender
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Female
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5 (41.7%)
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Male
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7 (58.3%)
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Diagnosis
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Alzheimer’s Disease
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10 (83.3%)
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Mixed dementia
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2 (16.7%)
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Years since diagnosis
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0-2
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7 (58.3%)
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3-5
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3 (25.0%)
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6-10
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1 (8.3%)
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>10
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1 (8.3%)
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MoCA score
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10-17 (moderate cognitive impairment)
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7 (58.3%)
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18-25 (mild cognitive impairment)
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5 (41.7%)
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Living arrangements
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Alone
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2 (16.7%)
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With a partner/spouse
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10 (83.3%)
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3.2 Interview findings
In-depth analysis of interviews using IPA generated four main themes: 1) Medication as a lifeline, 2) Overcoming the uncertainty about the effectiveness of donepezil, 3) Managing medications dominate daily lives and plans and 4) Sense of being and being in control. Figure 1 shows the relationship between the four inter-related themes.
Theme 1: Medication as a lifeline: “Without it [medication], life would be very difficult or impossible”
Participants talked about their experiences from a position of acceptance of their dementia diagnosis and their need for medication.
“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 donepezil, was viewed as the primary help to manage dementia. 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
Donepezil was a lifeline and hope for ‘more years’ with their loved ones. Participants wanted to enjoy life with their family and donepezil was a key part to enabling life to continue.
“In one sense. It is one of the key things in my life. Without it life would be very difficult or impossible wouldn’t it? Yes. Oh yes, I regard it as a very necessary and important thing that I must be careful with, that I must keep on taking it and taking it at the right time, yes.” Participant 11
To not take donepezil was to give up on life. Participants wanted to live life to the fullest, for as long as possible and donepezil was a means for that to happen.
“I take it [donepezil] because I know it helps me. So, I’m, there’s no point me saying I don’t want it, I, then I may as well give up… But that helps me to keep going and enjoying life and that’s what, that’s what I want to do.” Participant 8
Theme 2: Contending with the uncertainty about the effectiveness of donepezil.
Although participants did not view donepezil as a cure for dementia, they expected it to have an effect on their dementia; positive or negative. When talking about these effects, however, there was a tentative response.
“I’m grateful that these things have been developed because I know that they have probably prolonged my memory, if I were without them, I would be pretty helpless I think.” Participant 12 [emphasis added]
“I guess I think I’ve lived a bit longer maybe, taking all this medicine. I’m not sure.” Participant 9 [emphasis added]
The participants’ view about the effectiveness of donepezil were tentative because they saw no changes in cognitive test results, could not perceive relief of their physical symptoms or did not associate a positive emotional response from taking it. Contrast was made with taking other medications such as aspirin for a headache or lansoprazole for stomach pains; here, the removal of pain would indicate that the medication had taken effect but not so for donepezil.
“It’s [picture of Venice], reminds me of holidays and relaxation which the tablets [donepezil] were supposed to give me same pleasure, make me feel better but they don’t.” Participant 5
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 3: Medications dominate life
It followed that medication dominated the daily lives and plans of participants. Medication-taking revolved around the establishment and maintenance of an intricate personalised routine within the home. The extent and complexity of the routine differed. Routines were associated with a particular time, space, activity and specific objects. For example, medication in a visible pillbox on the kitchen table was taken at breakfast time. A wide range of objects were used such as compliance aids, alarms, calendars, and record books – these were made clearly visible and easily accessible. These routines were established over time following trial and error (see Box 1). Participant-carer dyads were strict in following these routines.
Box 1: Examples of participant medication management routines.
Participant 1 receives a pre-packed medication blister pack from the community pharmacy. Sometimes she forgets the time and day, so she places a day clock in a prominent place in her living room. She takes her medication once a day at breakfast time.
Participant 4 does not use a compliance aid. She places the same red cup on the same red table mat, along with her medication bottle, at a specific corner of the kitchen before she goes to bed every night. This visual arrangement reminds her to take her medication when she enters the kitchen the next morning.
Participant 6 does not use a compliance aid. She and her husband both take medication. All their medications are stored in the same green box. She takes medication once a day, at breakfast, the same time that her husband takes medication.
Participant 8 does not use a compliance aid. Due to an incident involving the participant taking an unintentional overdose (he forgot he had already taken his medication so took it again), his wife keeps all his medication in a cashbox. When it is time to take medication i.e. breakfast time, he tells his wife he needs his medication. She then opens the cashbox and takes out the medication. The participant then takes the medication. He marks on a paper calendar placed in the kitchen that he has taken his medication.
Participant 12 refills his dosette box every Monday at 8am. He is prescribed a range of medication. Immediately after his morning wash, he takes one medication in the bathroom. This tablet is taken out from an original pack of medication. He says there is no space in his dosette box, so he keeps it in the bathroom and takes it in the morning. At breakfast time, he takes three tablets. These tablets are removed from his dosette box and placed in a special small ceramic bowl, that he associates with medication. As for donepezil, this is kept in the original box. He takes donepezil with a main meal; this could be in the afternoon or in the evening. As he often visits his partner in the flat next door and sometimes have a main meal there, he keeps a store of donepezil in her flat.
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An established routine was key in helping participants take their medication as independently as possible. Social events and holidays however, required further proactive planning with medication-taking. For one participant who takes a motorcaravan on holiday, the inside of the motorcaravan was set up to be almost identical to their kitchen at home to recreate a familiar environment associated with medication-taking. One participant poignantly talked about his experience of restricting himself from drinking wine during “card night” with his family because he is on medication (see Figure 2).
“Right this picture, it’s obviously, someone has had a glass of wine, there’s some crisps there…It probably meant that if we were drinking wine I shouldn’t drink too much of it because I need to take the tablets.” Participant 5
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 participant’s sense of self. Most participants had carers who were empathic, encouraging, patient and kind. These carers played a key role in ‘scaffolding’ the participant to enable them to be as independent as possible in managing medications. They ‘engineered’ the environment with and for the participant to take their medications. This resulted in participants being able to manage their own medications as independently as possible within a (carer-) controlled environment. Their ability to manage their own medications i.e. being in control, was key to their sense and view of self, and their wellbeing. Being in control of their medications meant being in control of their dementia.
“There it is. Well that’s it. I think it’s absolutely brilliant and you can see what it’s called. PPPP, and I just think it’s great that I can tick everything off so easily, yeah, and yeah, it’s made all the difference, because I’d never have remembered otherwise, would I?” Participant 2
“Oh I'm quite pleased with that really. I'm not, I don't know, maybe I'm doing myself down a bit but I've always thought I'm not the most organised person in the world. But with this, I'm organised so that's comforting.” Participant 10
Managing medications can also cause stress and tension within the participant-carer dyads and this was often due to differing concerns and priorities. Where the relationship between participant-carer dyads were fraught, these related to past negative experiences for example, the participant took an accidental overdose. In these cases, carers took over all or most of the medication management process, for fear of potential harm to and loss of the participant. The need to manage medications led to a change in dynamics within the participant-carer dyad and as a result, some participants viewed and talked about themselves differently, both positively and negatively.
Participant: Do you think I’m a simpleton? [angry voice]
Carer: Course I don’t think you’re a simpleton. I know you act like one but
Participant: I know. I take five in the morning and two at night. Is that correct?
Carer: No. But that’s all right.
Participant: Right so what do I take then? Participant 9
Most participants were careful to only take medications prescribed by the doctor. But for one participant, the carer researched a combination of medication/vitamins that could help dementia and made the participant take them, which the participant agreed to, against the consultant doctor’s advice.
“I researched, in America, to do with dementia a dose, small dose of folic acid, B6 and B12 daily helps, there’s been a small research, they’ve done quite a few small studies, they haven’t done big studies… and I put you on that, and Dr (name), your doctor, she didn’t want us to go on that, she said, no don’t do that…But I wasn’t interested in that, I wanted as many good things going in..[for the participant to take it].”
Participant 4 [emphasis added]