Researchers from the University of Manchester, Bangor University, Salford Royal NHS Foundation Trust and Salford R&I spoke with a number of stroke survivors to get an understanding of how stroke has affected their ability to look after their mouths and how important having a clean mouth is. The quotes below are an example of some these discussions and give a very personal and poignant insight into the importance of oral health to them.
Why is mouth care important?
“….your mouth projects who you are. It gives you your profile and because you’ve got no teeth, people will look at you in a different…I think a different way and light. I still keep going back, like I’m talking now with you, I’m ever so dry, and that’s the biggest thing with a stroke is things are not the same on this side….”
“….it’s very, very hard, very difficult, but very rewarding. So you put yourself through the purgatory of trying to do something without knowing where something is in relationship to your face, and you put yourself through that. But when it’s over, your whole body feels better….”
“….out of ten I think it’s got to be up there with an eight or a nine, because the stroke’s not that far away from where it’s happened, your mouth….”
“….I think they (hospital staff ) take it for granted that you’re going to brush your teeth and I think they take it for granted that everybody’s got a full set of teeth. And I think they also think that there’s no underlying problems when a person’s had a stroke….”
What are the issues for stroke patients when trying to clean your mouth?
“….you have really no feeling of whether you’re cleaning your teeth, cleaning your gum or cleaning fresh air, because you don’t have that reality of where it is in your mouth. If you put your finger in your mouth, you know your finger is in your mouth. If I put my finger in that side, I know it’s in my mouth because it’s gone in there, but on to that side it’s no real reference to where it is. So yes, I badly clean my teeth with an electric toothbrush now….”
What are the issues for stroke patients when attending for a dental appointment?
“….I’d got into the chair…and it was just, I’m not saying impossible, but it was a major trauma in my life trying to actually get myself positioned where I could more or less fall into the chair….”
“….then she started poking around with the probes, or whatever she was doing, and not saying what she was doing. And to me, I just felt as if I’d been invaded. I’d been invaded, I had no idea what was happening. She had a suction pipe in my mouth, it made it almost impossible to talk under normal circumstances, so my stroke was just doubly different and much harder….”
How important is keeping your mouth clean for stroke patients?
“…I think it is incredibly important, because the amount of bacteria that live in your mouth and are present in your mouth can have an impact on your whole wellbeing, so keeping it clean, or as clean as possible, is to me now important…”
“….oral hygiene…to me, my speech I can live with my speech. I find it annoying, frustrating, but I can live with it. A dirty mouth, to me that’s just something that’s inbred in me, I would never dream of coming out in the morning without cleaning my teeth….”
How does it affect your day-to-day life?
“….trying to learn to eat and talk, like a baby when you put food into a baby’s mouth, it comes out of one side. So it just slobbers out. It’s a strange feeling ‘cause….”
“….the whole life cycle of eating has had to change, where if we go out for a meal, I feel a bit embarrassed because I try not to speak. You know, it’s strange ‘cause they look…they see…they don’t… I always feel that they’re looking at me talking funny ‘cause I’ve got no teeth in. They don’t realise why I’ve got no teeth in. But to eat, sometimes the wife might have to cut up, you know, if it’s meat, but I would tend to go for softer food.…”
Do you get much oral health advice in hospital?
“….I never saw my teeth again then for three months, and by then it were too late to really ask something of your body to try and accept them….”
“….I didn’t have any oral care in hospital, apart… I had a stroke. I said I was getting ready. I was in me chair and I wouldn’t have put in me false teeth. I have false teeth. And I never saw them again for about three month probably….”
“….nobody really said put your teeth in. I did try it but obviously because of the stroke, the brain can’t… I don’t think me brain could really realise what was happening….”
“….no-one really talked to me about me dentures at all. It were only mentioned on the odd occasion, you know. It didn’t really come to light until probably three months, four months, down the line at home….”
“….I appreciate when the doctors put me on the ward, the concern is that the person, mobility and how we can get them back. I think teeth or the mouths, I think that’s the last thing that they don’t really bring into focus with a stroke….”
“….there was no leaflets, that’s the only thing. There’s leaflets for, you know, helping you with your physiotherapy and everything else but there were nothing about oral hygiene….”
How can we do things differently?
How care could be organised
Nothing for your mouth on discharge
“….I think it should have been picked up when the person’s starting to recover, because when you have a stroke, the recovery starts then, not….”
“….prevention has got to be done right at the beginning. I mean it’s got to be part of, I keep saying, that first part of if you’ve had a stroke. Because I know they examine you and make sure that your airways are all clear and all that, and…but it doesn’t… Probably a dentist consultant or…should go in and look at the mouth and look to see that the patient is okay….”
The research team also distributed a questionnaire to a larger group and found the following:
When we asked how important looking after their teeth and gums was (after their stroke), the majority of people who have had a stroke said that it was very important or important. Stroke appeared to have had a dramatic effect on person’s ability to care for their mouth. Difficulty gripping or holding objects like a toothbrush was highlighted, alongside the inability to “feel” anything in their mouths (due to sensory changes caused by the stroke). Difficulty with eating was also raised as a problem, as was being treated in the dental chair (in the supine position). Three quarters of the patients said that none of the staff in hospital had provided any oral health education or instruction during their in-patient stay.