In plain English
Swallowing difficulties (dysphagia) and unintended weight loss are common in moderate to severe dementia and have significant implications for safety, nutrition and quality of life. Speech and Language Therapy and dietetic assessment are key.
What to look out for
- Coughing or choking on liquids or solids;
- "Wet" voice after swallowing;
- Food pocketing in the mouth;
- Slow eating;
- Refusal of certain foods, particularly tough textures;
- Recurrent chest infections (suggesting silent aspiration);
- Unintended weight loss (more than 5 per cent in 6 to 12 months).
Why this happens
Several mechanisms contribute:
- Reduced attention to the mechanics of eating;
- Loss of coordination of the swallow;
- Dentition problems;
- Dry mouth (often medication-related);
- Reduced appetite (medication, depression, illness);
- Cognitive failure to recognise food, or to chew and swallow as needed.
Speech and Language Therapy assessment
Speech and Language Therapy (SALT) provides specialist assessment of dysphagia. Referral via GP or memory clinic. Assessment includes:
- Observation of eating and drinking;
- Clinical bedside swallow assessment;
- Where indicated, videofluoroscopy or fibreoptic endoscopic evaluation of swallowing;
- Recommendations on safe textures and consistencies.
Modified textures
The International Dysphagia Diet Standardisation Initiative (IDDSI) framework is used in UK practice. Levels range from thin liquids (Level 0) through nectar-thick liquids (Level 2), pureed food (Level 4), to soft and bite-sized solids (Level 6) and regular textures (Level 7). Speech and Language Therapy advises on which level is safest.
Strategies that help
- Calm, unhurried mealtimes;
- Sit upright at 90 degrees;
- Small, frequent meals rather than large ones;
- Finger foods if cutlery is difficult;
- Familiar foods at familiar times;
- Adequate fluids between meals;
- Good oral and dental care;
- Energy- and protein-dense foods if weight loss is a concern;
- Dietary supplements (Fortisip, Ensure) where intake is inadequate;
- Eat together; people with dementia eat more in company.
Tube feeding in dementia
Tube feeding (PEG, NG) is not routinely recommended in advanced dementia. Trials and guidelines find no clear benefit on survival or quality of life, and tubes carry risks (infection, pressure injury, agitation, restriction). The Royal College of Physicians and Alzheimer's Society recommend careful conversation about goals of care before any tube placement.
Hand feeding, even where slow, is generally preferred for quality of life. Discussion about feeding decisions should be part of end-of-life planning while the person has capacity.
Weight loss in dementia
Unintended weight loss is common and contributes to frailty, infection risk and falls. Practical steps:
- Monitor weight monthly;
- Track food and fluid intake for a week if concerned;
- Dietitian referral for individual advice;
- Energy-dense diet (full-fat dairy, nut butter, olive oil, supplements);
- Treat underlying causes (depression, dental problems, medication side effects);
- Adapted mealtime support.
Frequently asked questions
Is choking common in dementia?
Aspiration (food or liquid entering the airway) is common in moderate to severe dementia, often silent (without obvious coughing). Speech and Language Therapy assessment identifies risk and advises on safer textures.
Should we get a feeding tube?
Tube feeding is not routinely recommended in advanced dementia. Hand feeding, even if slow, is generally preferred for quality of life. Discussion of goals of care is essential.
What is the IDDSI framework?
An international texture grading system used by Speech and Language Therapy. Levels run from 0 (thin liquids) to 7 (regular food).
Can supplements help?
Yes. High-energy and high-protein supplements (Fortisip, Ensure) increase intake where appetite or efficiency is reduced.
When should I seek SALT review?
Any new coughing or choking with eating or drinking, recurrent chest infections, or significant weight loss.
References
- NICE NG97 recommendation 1.5.
- Royal College of Physicians. Oral feeding difficulties and dilemmas. 2010.
- International Dysphagia Diet Standardisation Initiative. https://iddsi.org
- Sampson EL et al. Enteral tube feeding for older people with advanced dementia. Cochrane Database 2009.