Dysphagia diets after a stroke, and mealtimes at home

A stroke can damage the part of the brain that coordinates the muscles of the mouth and throat, and the Stroke Association explains that swallowing problems, called dysphagia, are very common after a stroke. The danger is food, drink or saliva going into the airway instead of the food pipe. That is called aspiration, and it can lead to a chest infection. Changing the texture of food and the thickness of drinks gives the mouth and throat more time and more control.

Where your relative sits on the ladder was decided by a speech and language therapist who watched them swallow. IDDSI itself says that the clinician is responsible for recommending foods and drinks for a particular patient after a full assessment. So the level on the discharge letter is an instruction for this person, and only the therapist should move it. The Stroke Association points out that someone may feel they can swallow safely without that being certain. If you think things have improved, ask for the swallow to be looked at again. The same applies if they seem worse.

The ladder is the same whatever caused the swallowing problem, so the levels here also apply to swallowing and speech in Parkinson's and to eating and swallowing in later dementia. The Stroke Association also says that many people's swallowing improves in the first few weeks after a stroke, which is one more reason the level is reviewed rather than fixed. The first weeks home after a stroke covers the rest of what changes in that period.

1. 1

   Check the plan for the level and the product

   Before the first cup

   The plan should name the IDDSI level for drinks and the thickener to use. Guidance from one NHS formulary says thickeners should only be prescribed on the recommendation of a speech and language therapist, so ask them or the GP how to get more.
2. 2

   Follow the instructions on the tin for that level

   Every drink

   Each product has its own number of scoops per amount of liquid for each level, and some are added to the cup before the drink. The formulary guidance warns that mixing methods vary between products. Use the scoop that came in the tin.
3. 3

   Stir, then wait before serving

   As the tin says

   Stir until the powder has fully dissolved. Some thickeners need to stand for a short time before the drink reaches its final thickness, and the tin says how long.
4. 4

   Check it looks right, and ask if it does not

   Each time

   The therapist can show you what the level should look like on a spoon. If a drink seems too runny or too thick, make it again rather than adding more powder or water to the cup.

Every drink counts, including tea, soup, milk on cereal and the water taken with tablets. A Cambridge University Hospitals leaflet on mildly thick drinks at level 2 says plainly that all drinks should be at that level. It also says thickening nutritional supplement drinks is not recommended, so if your relative has been prescribed build-up drinks, ask the dietitian or therapist how they should be taken.

IDDSI publishes a flow test that uses a 10ml syringe to check which level a drink has reached. Leave it to the therapist unless they show you how to do it, because it needs the right syringe and careful timing. The IDDSI detailed definitions set out the test for anybody who wants to read how it works.

The Stroke Association suggests thickened drinks are more pleasant chilled, flavoured or made fresh. Drinking enough still matters, and keeping an older person hydrated explains the signs of not drinking enough and what helps. If thickened drinks are being left, tell the therapist.

Bread needs a special mention. IDDSI says there should be no regular dry bread, sandwiches or toast at level 5 or level 6. Its framework pages have instructions for a softened sandwich if the therapist agrees.

The practical work is in the cooking. An NHS leaflet on minced and moist food and IDDSI's own definitions both describe the same habits:

• Cook meat and vegetables until they are very soft, then mash, mince or blend them to the size the level allows. For level 5 that is lumps no wider than the gap between the prongs of a fork.
• Moisten with a thick, smooth sauce or gravy, and drain off any thin liquid so none separates on the plate.
• If meat cannot be minced finely enough, IDDSI says it should be pureed instead.
• Scrape off any crust that forms in the oven, such as a cheese topping.
• Mash each food separately, so a plate keeps its colours and flavours. The Stroke Association suggests food moulds for making pureed food look appetising.

An East Kent Hospitals leaflet on the level 5 diet says some supermarket ready meals such as cottage pie can be mashed to level 5, and it lists companies that deliver texture-modified meals. Check any ready-made meal against the level before serving it.

These points come from the Stroke Association's advice for family members helping someone eat. The therapist may add strategies for your relative, such as a particular head position, because NICE asks for people with dysphagia after a stroke to be supported using methods advised by a dysphagia-trained professional. Write those down with the plan. An NHS leaflet adds that the mouth should be fully cleared at the end of a meal. If eating tires them, the Stroke Association suggests smaller meals through the day.

Mouth care matters more when the swallow is unsafeSection titled Mouth%20care%20matters%20more%20when%20the%20swallow%20is%20unsafe

The mouth holds a lot of bacteria, and if saliva carrying them is breathed in, it can cause pneumonia. NICE says people with dysphagia after a stroke should be supported with an effective mouth care routine because this decreases the risk of aspiration pneumonia. NICE asks for teeth and gums to be brushed at least twice a day. Where somebody cannot do it themselves, NICE says a trained professional, family member or carer should do or supervise it. An Oxford Health NHS leaflet on mouth care for people with swallowing problems suggests a soft, small-headed toothbrush. It also says to check the weaker side of the mouth is clear of food after every meal, and to ask the therapist before using mouthwash, because mouthwash is a thin liquid. The Stroke Association adds that non-foaming toothpaste can reduce the risk of aspiration. Ask the ward or the therapist to show you how before discharge, and daily mouth care, dentures and when to call a dentist covers the routine at home.

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A tablet with a glass of water is a thin drink with a solid in it. Do not crush tablets, open capsules or mix medicines into food without advice. The NHS says a pharmacist can advise on other forms of a medicine, such as a liquid or a dissolvable tablet, and that crushing or opening should only be done on their advice. NICE asks for medicines to be reviewed where somebody with dysphagia cannot take tablets. Ring the community pharmacist or the GP, and what carers can and cannot do with medication covers the carer's side of it.

The NHS lists coughing or choking when eating or drinking, a wet, gurgly voice and repeated chest infections as signs of dysphagia, and says that over time it can cause weight loss and dehydration. The NHS page on pneumonia notes that confusion is a common symptom in older people, so new muddle can be the first sign rather than a cough. NICE also asks that families and carers are given information on how to help someone who is coughing or choking while eating or drinking. Ask the therapist for that before discharge, and consider a first aid course for whoever does the meals.

Keeping weight and fluids upSection titled Keeping%20weight%20and%20fluids%20up

A modified diet can make it harder to eat enough. The Stroke Association says that if someone weighs less than usual or their clothes are getting looser, speak to the dietitian, the therapist or the stroke nurse. The East Kent leaflet suggests weighing once a week, eating little and often, and making food more nourishing with whole milk, cheese, butter and cream. What happens when an older person does not eat enough sets out why weight loss matters. If swallowing stays unsafe and weight keeps falling, the stroke team may raise tube feeding, and PEG feeding at home explains what that involves.

Carers on PrimeCarers are self-employed and set their own rates, and you choose them yourself. Before a carer appears, we check their identity and right to work and an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and we interview them online. We do not check qualifications, training or references, so anything a carer says about dysphagia or texture-modified food is their own account on their profile, and it is for you to ask them about it. Every visit booked through PrimeCarers is insured, by the carer's own policy or by cover PrimeCarers arranges where they do not hold one. How we check every carer sets this out.

Ask the therapist to show the carer, as well as you, how the drinks are made and how a meal is given, then write it into a care plan you draw up together. Under the agreement between client and carer, the carer keeps discretion over how they work and should not take on work they feel unqualified to do, so ask whether they are comfortable before the first visit. Tube feeding is different: it is a healthcare task that a carer may do only after a professional has trained and signed them off for that person, which delegated healthcare tasks explains.

If you would like help at mealtimes, you can search for carers near you and compare their rates. An hour at lunch and an hour at teatime every day is 14 hours a week, which costs £252 to £350 on PrimeCarers with our fee included. An agency charges £28 to £35 an hour for the same visit. How many visits a week your parent needs helps you build the rest of the week, and rehab at home after a stroke covers how the carer fits around the therapists.