"The Lesser of two Evils" Versus "Medicines not Smarties": Constructing Antipsychotics in Dementia

Dilbagh Gill, MPharm; Saleh Almutairi, PhD, MSc, BSc; Parastou Donyai, PhD, BPharm, BSc

Disclosures

Gerontologist. 2019;59(3):570-579. 

In This Article

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Interview Extracts as Illustrative Material

Extract 1: CHM interview 5, page 1, lines 12–13: "They've already showed, displayed symptoms of not coping at home or the family not being able to keep them safe. Incidents where they go out at night, they leave things on the stove."

Extract 2: GP interview 26, page 2, lines 75–76 "I would say so, that the benefit outweighs. It must be terrible to be 24 hours a day agitated and fearful, so I think it's perfectly reasonable to try medications to improve quality of life."

Extract 3: GP interview 10, page 1–2, lines 37–44 "Well, my experience, I mean the sort of things that I reserve antipsychotics for are uncontrollable difficult symptoms. I mean if somebody's wandering and they're harmless, that's fine. If someone's talking to everyone they meet or paranoid, but they're OK, not bothered about that. But when someone, when they start hitting the other patients, or hitting the staff or start trying to break down the window. We had someone the other week who ripped a radiator off the wall. Think of that, ripped a radiator off the wall. You know, what's the alternative? Are you going to put a waist, put a straitjacket on them? So these drugs, when they work, and they don't always do, they will reduce that often quite aggressive behaviour."

Extract 4: CPN interview 11, page 4, lines 115–121 "I saw a chap on Friday he said, I said, what do you think about trying to, because she's on quite a high dose, do you want, trying to reduce the dose you know, talked again about the stroke risk he said, absolutely not, please don't touch anything, I'm able to cope now, if it was altered I wouldn't be able to cope she'd have to go into a home, please don't tinker with it at all, it's at a really good level. So I come back and fed that back to her doctor and the doctor said, well we have to respect the fact that he's doing a very, very hard job keeping her at home and home is where she wants to be, home is where he wants her to be. I don't know it's, what do you do?"

Extract 5: CPN interview 11, page 2, lines 71–77 "It's funny I was just talking to one of our consultants about a lady that I visit, if she wasn't on these, the medication, at the level she's on, her husband wouldn't be able to manage her at home. But I think if he couldn't manage at home then she would have to go into residential care and if she was in residential care they would need far higher doses of the medication to manage her. She's very distressed, she's quite disorientated, she doesn't know where she is, she's quite aggressive when she's disorientated. So in some people's cases it, it's the lesser of two evils."

Extract 6: CHM interview 1, page 2, lines 64–68 "Well any medicine that works on the brain is going to have side effects on the brain, so it can actually give you more of the behaviours that you don't want, if it doesn't suit. It can make them extremely sleepy, can put them at a risk of falling if they are sleepy, it can exacerbate other symptoms that they have, make them feel really sick. There's not an awful lot of plusses are there?"

Extract 7: CHM interview 2, page 1–2, lines 45–49 "I do not like antipsychotic drugs for people with dementia. Because one, you are not getting the best out of them, they become very dopey, sometimes you see them salivating, you see them very sleepy and drowsy. And what you then doing for them is taking their skills away from them. By providing them with wonderful environment that will enhance them, you don't need medication for them. And by training the staff that are looking after them, you don't need all that."

Extract 8: CHM interview 2, page 3, lines 97–100 "The downside to it is because you deskilled them, in all their long life skills that they've got. Skills of having, looking after themselves, skills with cooking, skills with knitting or sewing, skills with washing themselves and so on. Or going out, socialising, you take that away from them when you use drugs on them."

Extract 9: CHM interview 2, page 2, lines 90–91 "I don't believe in my old people sitting in one big circle, looking into each other's face, or into each other's eyes and doing nothing."

Extract 10: GP interview 28, page 3, lines 116–119 "By taking an antipsychotic it actually dampens their natural reflexes, their natural, the way they would react naturally. So, it treats the aggression but it also calms them too much and I think you lose a little bit of the person's personality by giving them. You take away."

Extract 11: CHM interview 2, page 2, lines 57–62 "We use antipsychotic drugs to manage behaviour, instead of managing behaviour with activity, with communication, with taking them out and getting their wellbeing. When my wellbeing is adequately taken care off, my behaviour will not be a destructive one. You will enhance me, I'll be able to do things myself, or even by the time I cannot do it by myself and someone is assisting me to do it, I'll be able to comply, compliant with you doing things for me without belting you."

Extract 12: CPN interview 12, page 1, lines 29–42 "One of the things I do find as an, as a nurse, people in nursing homes, residential homes, will often phone us and want an increase or somebody to start on an antipsychotic to deal with the behaviours rather than looking at ways of deal, rather than at ways of managing the behaviours. It's something I feel quite strongly about, years ago I did a lot of support care work as a support worker and so I've worked on both sides. I've worked in care homes and things so I know the realities. In the care homes often staff are lowly paid, poorly motivated, often the staffing numbers you know there might be three to a whole room of people, obviously it's very difficult for care staff in the residential homes, the nursing homes, to actually manage the behaviours like we can. I think training could be better in a lot of nursing homes. Incidentally it's very hard when staff are very overworked in these places, I see both sides of the argument. And, as I said, we have a lot of sort of slight disagreements with nursing homes because they want us obviously to increase medication all the time and they'd like people to be sedated to make their life easier rather than looking at ways to work with the behaviours."

Extract 13: CPN interview 11, page 2, lines 67–68 "These are very powerful drugs that work on the brain it's not, you don't want to hand them out too readily like Smarties."

Extract 14: GP interview 10, page 3, lines 113–115 "Well, reaching for a prescription pad and a pen is very easy to do. And you're in a hurry, and the nurse on the ward says, oh Mrs Smith is terrible. Fine, let's give her some quetiapine. That's very, very easy to do and maybe not much thought has gone into it."

Extract 15: GP interview 7, page 4, lines 133–134 "They should always be justified but I think it's still used as the easy option. Because it's something as doctors, we do, we just prescribe a medicine."

Extract 16: GP interview 7, page 2, lines 63–66 "I suspect I have read them a long time ago. I can't remember them. I mean I've just, I read guidelines, but I don't, I mean I've kept about 50 guidelines there that are the most ones I refer to often, but other ones, after I've not referred to it for a long time I tend to throw them out and hope I get the gist of it."

Extract 17: GP interview 28, page 4, lines 154–157 "I've not read any guidelines. I just go according to what the consultants say to me so I'm not, I know there are NICE guidelines about antipsychotic risk. I mean, I'd, I've not read any but I think the reason we don't get involved with reading those is because a lot of our prescribing is based on secondary care advice."

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