Mealtimes often become the hardest part of the day, for the person and for whoever is feeding them. There is help for this, and asking early gives you more options.
What changes
Swallowing gets worse over time. When it does, food and drink can go the wrong way into the lungs, which can cause chest infections. Coughing at meals, a wet or gurgling voice afterwards, a long time holding food in the mouth, or chest infections that keep returning are all worth reporting.
Refusing food is not always about swallowing. The 2026 UK recommendations for CJD care note that refusal can come from the cognitive changes of the illness, or simply from being hand-fed by someone unfamiliar. The same person being fed by someone they know, in a quiet room, sometimes eats without difficulty.
Who to ask
A speech and language therapist. They assess swallowing and advise on what is safer, and the 2026 recommendations list a speech and language therapy assessment as the first step where eating by mouth continues. A dietitian advises on nutrition. Both come through a referral from the GP or the hospital team.
The CJD Foundation publishes a speech and language handout covering communication, swallowing and memory, which is a useful thing to take to that appointment.
What helps when someone still eats by mouth
The 2026 recommendations name four things together: a speech and language therapy assessment, changes to the texture of food and drink, good mouth and dental care, and one clear care plan that everyone involved follows.
Mouth care does more than people expect. For saliva that pools or drools, the guidance advises good mouth care, attention to how the head is positioned, and gentle suction at the front of the mouth, with medicines for saliva used cautiously.
What about a feeding tube?
This is decided case by case, and it is not a decision the family has to carry alone.
The 2026 recommendations say decisions about assisted feeding and fluids should be made in the person’s best interests, with their capacity reviewed and with input from the family and the wider care team, and reassessed regularly as things change. They also state plainly that tube feeding prolongs the late stage in which someone is awake but unable to move or speak, and that national guidance advises against routine assisted feeding in severe dementia unless there is another cause that could get better.
In some inherited forms, swallowing fails early while the person is otherwise much less affected, and the guidance says assisted feeding is more clearly justifiable there. Practice also differs by country. Tube feeding is common in Japan, and in Germany its use has fallen so that a feeding tube through the stomach wall is now reserved for exceptional cases.
If the discussion has not happened yet, you can ask for it. If it has happened and the answer no longer fits the situation, you can ask for it to be revisited.
Risk and the person’s own wishes
Continuing to eat by mouth with some risk is a legitimate choice, and the guidance asks that risks be weighed against the benefits and against the psychological harm of stopping. For many people, tasting food is one of the few pleasures left. That belongs in the conversation.
More detail sets out how these decisions are framed and what the evidence behind them says. End of life decisions covers planning ahead, and palliative and hospice care describes the teams who help with symptoms. Questions about this person’s swallowing belong with the treating team, not with a web page.