A Complete Guide To Swallowing Problems After Stroke

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A complete guide to swallowingproblems after strokeA complete guide toSwallowingproblemsafter stroke

Swallowing problems are very common after a stroke.If your swallowing has been affected, this guide canhelp you understand what you need to do.It explains why swallowing problems happen after astroke and what you can do to improve them. It alsotells you how speech and language therapists anddietitians can support you.It’s aimed at people who have had a stroke but there isinformation for family and friends as well.We have information on all aspects of stroke.If you have a question that is not answered in thisguide, visit stroke.org.uk or call our Stroke Helplineon 0303 3033 100.The cost of printing this leaflet has been paid for byWiltshire Farm Foods. The Stroke Association retainsindependent editorial control over all content.2Swallowing problems after stroke

What’s in this guide?Why can’t I swallow?4Can swallowing problems make you unwell?6Will my swallowing get better?7Are there treatments that can help?8Changing your diet8Swallowing assessments9Tube feeding10What can I do about swallowing problems?12Where to get help and information15From the Stroke Association15Other sources of help and information15Tips for family and friends16About our information17Swallowing problems after stroke3

Why can’t I swallow?Swallowing is a complicated task that needsyour brain to coordinate many differentmuscles. If your stroke damages the partsof your brain that do this, then this will affectyour ability to swallow. Swallowing problemsare also known as dysphagia.Other effects of stroke can make eating,drinking and swallowing difficult too. If yourarm or hand has been affected by your stroke,you may not be able to use a spoon or a cupproperly. This can affect the way you swallow.If your face or lip muscles are affected, thiscan make you dribble.4Swallowing problems after strokeIf your balance has been affected, you maynot be able to sit up straight, which can makeswallowing more difficult. If you’re drowsy ornot able to concentrate very well, then youmay not swallow your food in the right way.There are several stages to swallowing.A stroke can affect any one of these stages.

The four stages of swallowing1. You see and smell food and put it inyour mouth. You then prepare it forswallowing by chewing and moving itaround your mouth.2. Your tongue moves the food or drink tothe back of your mouth.3. The food or drink moves through yourthroat to your food pipe (oesophagus),which carries food to your stomach. Atthe point of swallowing, a flap in yourthroat (the epiglottis) moves to closeover and protect your airway. This stopsany food from going into your lungs.4. The muscles in your oesophagussqueeze in waves from top to bottom,moving the food down into yourstomach.Swallowing problems after stroke5

Can swallowing problems make you unwell?If you can’t swallow correctly then food anddrink may be getting into your airway andlungs. This is called aspiration. If this happensit can lead to infections and pneumonia,which can be very serious. So it’s extremelyimportant that any change to your swallowingis spotted early, to avoid this happening.Aspiration isn’t always noticeable. Somepeople seem to swallow well, but food ordrink may still be getting into their lungs. Thisis called silent aspiration. So you’ll need anassessment with a trained professional toconfirm whether you are swallowing safely.6Swallowing problems after strokeSigns of swallowing problemsEveryone who has a stroke should bechecked to see if they can swallow safely.This should happen within the first fewhours of being in hospital. However,problems aren’t always obvious, so it’sgood to know what to look out for.These are some signs of swallowingproblems: coughing or choking when you’reeating or drinking bringing food back up, sometimesthrough your nose food or drink going down the wrongway feeling that food is stuck in your throat not being able to keep food or drink inyour mouth still having food or drink left in yourmouth after you’ve swallowed not being able to chew food properly a croaky or ‘wet’ sounding voice dribbling taking a long time to swallow or finish ameal having to swallow a lot to clear yourthroat, or loudly clearing your throat being short of breath when you’reswallowing.

Will my swallowing get better?Swallowing problems can get better and mostpeople are able to swallow safely again withinthe first few weeks. A small number of peoplehave problems that last longer than this. Onlya very small number of people are left withlasting difficulties.Even if you are left with permanentdifficulties, they don’t have to stop you fromdoing what you want to do. Most people findthat they’re still able to live full lives despitethem. But it may take some time to adjust tothe changes that you need to make.Swallowing problems after stroke7

Are there treatments that can help?If you have problems with swallowing youshould be referred to a speech and languagetherapist, who will work with you to try toimprove it.Your speech and language therapist willcomplete an assessment with you, to workout exactly what’s going on. Once theyknow this, they’ll be able to talk to you andyour family about the best ways to treat ormanage your swallowing difficulties.It’s important that you don’t eat or drinkanything until your swallowing has beenchecked. Your doctor or nurses may referto you being ‘nil by mouth’ until you’ve hadan assessment – this is when you’re toldnot to eat or drink anything.To begin with, the most important thing willbe making sure that you can swallow safely.If you’re not swallowing safely, it could causeinfections or mean that you’re not gettingenough food or fluids into your body. Yourspeech and language therapist will explainthe different things you can do.This could include: changing your diet learning techniques that can help you toswallow using aids that can help you to eat or drinkmore easily.As well as these, your speech and languagetherapist may also get you to practiseexercises. Strengthening the muscles in yourface, tongue, lips and mouth may help you toswallow better.8Swallowing problems after strokeChanging your dietIf you can’t swallow safely, then you’llprobably need to make changes to your dietuntil you can. With advice from a speech andlanguage therapist, you may need to makecertain changes. Thicken your drinksWater and other thin liquids are thehardest things to swallow because they’redifficult to control. However, there arepowders you can add to make themthicker and easier to swallow. Thereare lots of different powders, which canthicken drinks to different consistencies,depending on what you need. Eat soft or pureed foodSolid food needs to be chewed to make iteasier to swallow, and reduce the risk ofinhaling small particles of food (aspiration).So if you’re having problems, you may needto stick to soft food (like mashed potato),which doesn’t need much chewing. Or youmay need to have pureed food to beginwith, which is very smooth and doesn’tneed to be chewed at all. Change the temperatureHot foods and drinks can be difficult toswallow because you can’t hold them inyour mouth as long. So your therapistmay suggest that you stick to cold foods,or allow hot food to cool down quite a bitbefore you try to eat it. Change how and when you eatEating small amounts throughout the day,rather than three big meals, for example,may be better for you if you’re finding ithard to concentrate or you get tired veryquickly. You may also find small portionsare easier to manage, or that eating earlierin the day when you have more energy,works better.

Your speech and language therapist willexplain to you and your family exactly whatfoods are safe for you to eat. They’ll alsomake sure that the rest of your stroke teamare clear about what you can and can’t eat,and how you should be eating.You may only have to change your diet fora short time. As you start to recover you’llprobably move on to more solid foods andthinner drinks. You may be able to introduceother foods bit by bit, until you’re back toeating a normal diet again.It’s likely that your stroke team will have adietitian who can help you with any changesto your diet. They can also help if you havedietary needs because of another conditionsuch as coeliac disease or allergies.Dietitians work with people to make sure thatthey’re getting the nutrition and fluids thatthey need. They’ll monitor your weight andhow much you’re eating and drinking, to makesure that you stay healthy. If they’re worriedthat you’re not getting everything you need,they may suggest that you take supplementsor try special foods to boost your diet. Youmay need to add supplements to your foodand drinks that can give you extra nutrientsand calories.Swallowing assessmentsYou’ll probably have a number of swallowingassessments while you’re in hospital, tomonitor how well you’re improving. Theseassessments will be carried out by yourspeech and language therapist and caninvolve different tests. You may have to do allof them or just one or two. Your therapist will usually begin by askingyou to swallow a very small amount ofwater, followed by food and drinks ofdifferent consistencies. This lets themsee whether you are able to swallowthem safely. They may also do a physicalexamination. A videofluoroscopy involves taking a videoX-ray of your mouth and throat whileyou swallow. This allows your speech andlanguage therapist and radiologist tosee the food or fluid you are swallowing.You will sit beside an X-ray machine andbe given different foods and drinks toswallow. These will be mixed with a specialliquid called barium that will show up onthe X-rays. Barium is safe to eat and won’tcause you any harm, although it may makeyou feel slightly sick and can sometimesmake you constipated. It can also makeyour poo white for a few days. A fibreoptic endoscopic evaluation ofswallowing (FEES) uses an endoscopeto find out what’s happening when youswallow. An endoscope is a long, thin,flexible tube that has a light and a tinycamera at the end of it. It’s inserted intoone of your nostrils and down your throat,so that your therapist can see how wellyour muscles are working and where theproblems may be occurring. If you havejust had a stroke or are not able to get up,it can be done at your bedside.Swallowing problems after stroke9

Although your therapist will probably doregular assessments with you, don’t beafraid to ask for another if you think you’veimproved. Your therapist may not be able tosee you every day, so they may not realisehow well you’re progressing.Although swallowing problems often getbetter within the first few weeks, it can takelonger for them to improve. If you’re not ableto swallow, you’ll be given fluids through adrip to make sure that you don’t becomedehydrated. It’s also important that you getthe right nutrition, so your stroke team mayalso talk to you about being fed by a tube.Tube feedingTube feeding means putting liquid fooddirectly into your digestive system through atube. This is also known as enteral feeding.There are different types of feeding tubes.The two that are used most often aftera stroke are nasogastric (NG) tubes andpercutaneous endoscopic gastrostomy (PEG)tubes.NG tubes go through the nose into thestomach. They tend to be temporary and arenormally used if you’ll need to be tube fed forless than four weeks. Whereas a PEG tubeis inserted into the stomach through a holein your skin. They tend to be used for longerperiods.Your team may suggest that you try an NGtube to begin with, as you can always move toa PEG tube later. But if you don’t think you’regoing to be able to cope with an NG tube, youcan try a PEG tube straight away.There are advantages and disadvantages toboth. You’ll need to talk through both optionswith your stroke team and family to decidewhich one is best for you.10Swallowing problems after strokeNG tubeA very thin tube, not much wider than apiece of spaghetti. It goes up your nose,down the back of your throat and intoyour stomach.Advantages Easy to insert. Safer to insert than a PEG tube, as it’sless invasive. Easy to remove. No need for sedation.Disadvantages Can be uncomfortable when it’s inplace. Can fall out easily, so it may need to bereplaced regularly. Some people don’t like how it looks.PEG tubeA tube that is inserted directly into yourstomach, through your skin.Advantages Rarely falls out. More comfortable. Can be hidden under your clothes.Disadvantages More difficult to replace if it does fallout. You may need to be sedated when it’sinserted, which has risks. The area around the tube can becomeinfected.

Tube feeding at homeIf your overall recovery is good, then yourstroke team may suggest that you go home,even if you’re still being fed by tube. This canworry some people as they think it can be alot to cope with.However, most people cope very well with tubefeeding at home, even people who live on theirown. Once you’ve given it a go, you’ll probablyfind it’s not as difficult as you thought.Five reasons to consider tube feeding athome1. Feeding machines are usually very easyto use.2. There’s not much that can go wrongand nothing that can put you in danger.3. You and your family will be shownexactly what to do before you go home.4. You’ll have support from communitynurses once you are home.5. You can always consider other optionslater, if you do find it too much.It’s up to your stroke team to make sure thatyou and your family have all the information,support and equipment you need beforeyou go home. You’re likely to have lotsof questions, and the earlier you get theanswers, the more confident you’ll feel aboutgoing home.So ask your speech and language therapist ordietitian to go through it all with you as soonas they can. We’ve suggested some things toask them below.Questions to ask before you go home How do I use the feeding machine? How do I know if the tube is in place? Will I still be able to eat using my mouthif I want to? What do I do if the tube becomesblocked? Do I have to clean the machine? Howdo I do it? Are there written instructions I canhave? How do I get more food? Who do I contact if I have a question? Who do I contact in an emergency?Some people don’t completely recover andif you’re left with lasting problems, you mayhave to continue being fed by tube or stay onsoft food permanently.Although this can take some getting used to,it doesn’t have to stop you from doing thingsthat you want to do. Over time you’ll adjustto the changes you need to make and, witha little extra planning, still be able to enjoythings like going out and going on holiday.Your dietitian or speech and language therapistwill be able to give you any advice you need.Swallowing problems after stroke11

What can I do about swallowing problems?1Listen to your therapistThe most important thing for youto do is to follow the advice thatyour speech and language therapistgives you. Even though you maythink that you’re able to swallowsafely, you can’t know for sure.Not being able to eat the things youenjoy is difficult, especially whenyou’re stuck in hospital, or if you arefeeling down. However, avoidingdifficult foods, however much youmiss them, will help you recover.23DoCreate time and space foryou to concentrate on whatyou’re doing. So turn offthe TV or draw the curtainround your hospital bed.Sit up with a straight back,arms and hands forwards.If you are in a chair, keepyour feet flat on the floor.Take your time.Ask questionsIt’s important that you understandthe instructions and advice you’regiven, so ask your speech andlanguage therapist to explain thingsagain if you need them to. Don’tworry if you feel that you’re alwaysasking questions. Your stroke teamwould much rather you ask thando something that puts yourself atrisk. So if you want to eat somethingbut you’re not 100% sure it’s OK,double check. Or if you think yourswallowing has improved, ask foranother assessment, so that youcan be sure.Learn how to swallow safelyAlthough your speech andlanguage therapist will show you,our swallowing dos and don’ts canremind you how to swallow safely.Take small amounts. Cutfood up into small pieces,and just take small sipswhen you drink.Swallow twice after eachmouthful, to make surenothing is left in yourmouth.Don’tTry to eat or drink if you’refeeling tired or drowsy.Try to eat or drink lyingdown.Talk while you’re trying toswallow.Use straws or cups withspouts unless your speechand language therapist hastold you it’s safe.Eat foods with a variety oftextures, such as soup thathas large chunks in it, orcornflakes with milk.12Swallowing problems after stroke

4Look after your mouth and teethIf you don’t clean your teeth andmouth, then bacteria will build uparound them. This can make yourmouth sore and lead to infections.It’s even more important if you haveswallowing problems, because tinytraces of food and drink are morelikely to stay suck to your teethand gums and in your cheeks. Thisencourages bacteria and plaque togrow. Plus, we all feel better whenwe have a clean mouth and freshbreath. Here are some tips to help:1. Looking after your teeth maybe the last thing on your mind,especially in the early stagesafter your stroke. Ideally youshould brush your teeth or cleanyour dentures after every meal,but this may not be possible. Tryto aim for at least twice a day ifyou can.2. If you have swallowing problems,ask your nurse or your speechand language therapist to showyou the safest way to cleanyour teeth, tongue and mouth.You can get non-foamingtoothpaste, which doesn’tcreate as much foam in yourmouth when you brush. Or youmay need to use a special gel toclean your teeth.3. Make sure you use a toothpastewith high levels of fluorideand that your toothbrush isdry before you start to use it.When you’ve finished brushing,spit out the toothpaste, butdon’t rinse your mouth. Thatway, more fluoride from thetoothpaste stays in your mouthand protects your teeth.4. If you wear dentures, it’simportant to clean your mouthand tongue as well as yourdentures. You can do this with asoft brush or using some gauzearound your finger. Someone inyour stroke team can show youthe safest way to do this.5. Avoid sugary drinks and snacks,as these will damage your teeth.If your dietitian advises you toeat sweet foods, clean yourteeth carefully after eating. Foodsupplements can also increaseyour chance of developing toothdecay, so clean your teeth orrinse your mouth with waterafter taking them.6. It’s important to keep your mouthmoist. Even if you can’t drink, youmay be able to use a saliva sprayor special gel to stop your mouthfrom getting dry. Ask your speechand language therapist.7. Use lip balm to stop your lipsgetting dry or cracked.8. Make sure you know what youneed to do before you go home. Ifyou’re still having some problemswith swallowing, make sure youhave any special equipment orproducts you need to keep yourteeth and mouth clean.9. See your dentist regularly. Theycan make sure that your teethand mouth are healthy and giveyou any advice you need. You mayalso need new dentures or haveyour current ones adapted to helpyou put them in and take themout. If you can’t get to the dentistyourself, ask whether they canvisit you at home.Swallowing problems after stroke13

5Talk to someone about itSwallowing problems can beespecially difficult to cope with athome. A large part of our familyand social lives is about eating anddrinking, so it can have a big impactwhen you’re not able to enjoy thesethings any more. Many strokesurvivors feel left out when they’renot able to take part in familymealtimes like they used to. Or youmay not look forward to meals out,because you’re embarrassed toeat in front of other people or feelawkward if you’re not eating witheveryone else.These feelings can take their toll.So make sure you talk to someoneabout them. Support groups can behelpful, because you can talk aboutyour problems with people who aregoing through the same thing. Butthey’re not for everyone, so talk toa friend or family member instead ifthat’s easier for you – whoever youfeel comfortable confiding in whenyou’re finding it tough.Other things to think about Just because you haveswallowing problems, itdoesn’t mean you can’t enjoyeating. Hospital food canbe pretty bad, so if you’remissing your favouritemeals and snacks, speak toyour speech and languagetherapist or dietitian. Theremay be a way for you to havethem, or to enjoy somethingsimilar. Soft foods don’t have to beboring. There are lots ofcookery books and onlinerecipes for tasty pureedmeals. Or if you’re not ableto cook, there are companiesthat will deliver meals to youthat look and taste great. Askyour speech and languagetherapist or dietitian if theyhave any recommendations. Medication comes in differentforms, including liquids,patches and inhalers. Soif you’re finding it hard toswallow your tablets, speak toyour doctor or pharmacist tosee if your medication comesin a different form that may beeasier for you to take. Alwayscheck with your pharmacistfirst before crushing tablets,as this can change the waysome medications work andcan even be dangerous14Swallowing problems after stroke

Where to get help and information?From the Stroke AssociationTalk to usOther sources of help andinformationOur Stroke Helpline is for anyone affected bya stroke, including family, friends and carers.The Helpline can give you information andsupport on any aspect of stroke.Below are some other organisations in the UKthat may be able to help. Contact our StrokeHelpline if you’d like to know about others inyour area.Call us on 0303 3033 100, from atextphone 18001 0303 3033 100 or emailinfo@stroke.org.uk.Association for the Rehabilitation ofCommunication and Oral Skills (ARCOS)Website: www.arcos.org.ukTel: 01684 576 795Email: admin@arcos.org.ukA charity that supports people whohave problems with eating, drinking andswallowing, as well as communication.Read our publicationsWe publish detailed information about a widerange of stroke topics including reducing yourrisk of a stroke and rehabilitation. Read onlineat stroke.org.uk or call the Helpline to ask forprinted copies.My Stroke GuideMy Stroke Guide is the stroke support tooland online community from the StrokeAssociation. Log on at mystrokeguide.com.Our Enquiry Line can support you with usingMy Stroke Guide: call 0300 222 5707 or emailmystrokeguide@stroke.org.uk.Talk to others affected by strokeThere may be a stroke group in your localarea where you can meet other strokesurvivors. You can meet people on ourMy Stroke Guide online chat forum atmystrokeguide.com, and our Facebook pageFacebook.com/TheStrokeAssociation.Call our Helpline or visit stroke.org.uk/supportfor more information on stroke groups andother face-to-face support.MyTubeWebsite: mytube.mymnd.org.ukMyTube is a website for people using tubefeeding and their carers. It includes videos,personal stories and practical informationabout tube feeding.NHS Choices (England, Wales, NorthernIreland)Website: www.nhs.ukNHS Inform (Scotland)Website: www.nhsinform.co.ukNHS websites that can tell you more aboutswallowing problems and how they arediagnosed and treated.Patients on Intravenous and Naso-gastricNutrition Treatment (PINNT)Website: www.pinnt.comA support group for people who are beingfed by tube. By becoming a member, you canreceive information, regular newsletters andinvitations to local meetings. Full membershipnormally costs 5 a year.Swallowing problems after stroke15

Tips for family and friendsIt can be difficult to know how tohelp someone with swallowingproblems. So here are some tips tohelp you.Always checkIt’s difficult to know what helpsand what doesn’t when it comes toswallowing. A straw, for example,may seem pretty harmless.However, most people withswallowing problems shouldn’tuse them. It should be OK to bringin food or drinks for someone inhospital, but just double checkthat it’s safe with someone in thestroke team first.Don’t ignore adviceThe best way to help your friend orfamily member is to make sure theystick to the advice they are given.You may be worried that they’regoing hungry or that not being ableto eat is getting them down. Talkingto their speech and languagetherapist about it should help to putyour mind at ease. Together youmay be able to think of somethingyou can do to help your friend orfamily member feel better.Give them time and privacySwallowing problems can makepeople feel very self-conscious.So make sure your friend or familymember has some privacy whenthey’re eating. Even if it’s justpulling the curtain round theirbed or asking visitors to pop outfor twenty minutes while theyeat. Time is also really important.Eating probably feels stressfulenough for them, so rushing isonly going to make it worse. Soencourage them to take their timeand enjoy their food.16Swallowing problems after strokeCoping with swallowing problemscan feel very overwhelming. Sodon’t be afraid to ask for help.Before your friend or familymember is discharged fromhospital, make sure you knowwho you can contact if you have aquestion once they’re home. Talkto your GP if it’s getting too muchand ask what support you can get.It may also help to talk to someoneelse about it, especially someonewho’s gone through a similarsituation. There will probably be acarers’ group in your area or youcould try your local stroke club.Do Make sure they’re sitting upstraight. A pillow may helpsupport their trunk if theyare leaning to one side. Allow plenty of time. Show them what they’reabout to eat, or describe it tothem. Eating is just as muchabout how the food looksand smells as how it tastes. Present food so it looksnice, and be positive andencouraging about it.Keeping food separate on theplate is more appetising thanmashing it all together. Foodmoulds can also help youpresent pureed food nicely.Don’t Give them food or drink ifthey are tired or drowsy. Rush them or offer too much. Move from one food toanother without asking them. Forget that you’re feeding anadult, not a child.

About our informationWe want to provide the best information for people affected by stroke. That’s whywe ask stroke survivors and their families, as well as medical experts, to help usput our publications together.How did we do?To tell us what you think of this guide, or to request a list of the sources we used tocreate it, email us at feedback@stroke.org.uk.Accessible formatsVisit our website if you need this information in audio, large print or braille.Always get individual advicePlease be aware that this information is not intended as a substitute for specialistprofessional advice tailored to your situation. We strive to ensure that the contentwe provide is accurate and up-to-date, but information can change over time.So far as is permitted by law, the Stroke Association does not accept any liabilityin relation to the use of the information in this publication, or any third-partyinformation or websites included or referred to.Swallowing problems after stroke17

Your notes18Swallowing problems after stroke

Swallowing problems after stroke19

Contact usWe’re here for you. Contact us for expert information andsupport by phone, email and online.Stroke Helpline: 0303 3033 100From a textphone: 18001 0303 3033 100Email: info@stroke.org.ukWebsite: stroke.org.ukWe are the Stroke AssociationWe believe in life after stroke. That’s why we supportstroke survivors to make the best recovery they can. It’swhy we campaign for better stroke care. And it’s why wefund research to develop new treatments and ways ofpreventing stroke.We rely on your support to fund life-saving researchand vital services for people affected by stroke. Join thefight against stroke now at stroke.org.uk/fundraising.Together we can conquer stroke Stroke Association 2018Version 2. Published: April 2018To be reviewed: April 2021Item code: A01F05CGStroke Association is a Company Limited by Guarantee, registered in England and Wales (No 61274).Registered office: Stroke Association House, 240 City Road, London EC1V 2PR. Registered as a Charity in England and Wales (No 211015)and in Scotland (SC037789). Also registered in Northern Ireland (XT33805) Isle of Man (No 945) and Jersey (NPO 369).

It’s aimed at people who have had a stroke but there is information for family and friends as well. We have information on all aspects of stroke. If you have a question that is not answered in this guide, visit stroke.org.uk or call our Stroke Helpline on 0303 3033 100. The cost of printin

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