One of the most important responsibilities you have as a caregiver for a loved one with dementia is supporting them during mealtimes. As the person with the best understanding of their mealtime behaviour, nutritional requirements, food preferences, and chewing capabilities, you are uniquely positioned to notice when they show early signs of dysphagia—a disorder characterized by difficulty in swallowing certain types of foods or liquids or coughing or choking when eating or drinking.
Why should you be aware of dysphagia and its health impact? It is estimated that 45% of people with dementia living in care homes have dysphagia. It can increase the risk of malnutrition, dehydration, choking, and aspiration pneumonia (food going down the wrong way and into the lungs), a potentially life-threatening condition. By recognizing the signs of dysphagia early on, you can get the support you need to help the person in your care swallow safely, preventing any negative consequences.
What causes swallowing difficulties in dementia?
There are several reasons why a person with dementia could develop dysphagia. As dementia progresses, brain regions involved in normal swallowing can be affected. Hence, the person may lose their ability to swallow safely. Dysphagia can also occur due to general frailty, resulting in the weakening of muscles that control swallowing.
An individual with dementia may also have difficulty eating and drinking due to a sore mouth or tooth decay. Environmental challenges, such as noisy dining rooms, could also be a contributing factor. Identifying the cause of dysphagia can help give the person appropriate support.
Identifying the signs of dysphagia
The initial signs of dysphagia may be pronounced, like visible or audible choking, or coughing when eating. At other times, the signs are very subtle or difficult to detect, such as a wet or gurgly voice during or after swallowing food or liquids. Other possible signs could include recurrent chest infections, difficulty chewing and moving food to the back of the mouth, holding food in the mouth for prolonged periods, and not swallowing at all. Dysphagia makes moving food from the mouth to the stomach challenging and takes more time and effort than usual.
Persistent dysphagia is a serious medical condition and requires immediate medical intervention.
Diagnosing dysphagia
Family physicians can help diagnose dysphagia and guide you through available treatment strategies. Upon referral, they perform an initial assessment and may ask a few questions, such as::
How long have you noticed signs of swallowing difficulties?
Have the signs you’ve spotted been getting worse?
Are the signs persistent, or do they come and go?
Has the problem affected their ability to swallow solids, liquids, or both?
Has the person you’re caring for lost weight?
Depending on their assessment, a family physician may subsequently refer the patient to one or more specialists:
Speech and language therapist (SLT) - A medical professional with expertise in treating swallowing and communication disorders
Gastroenterologist – A doctor with expertise in treating diseases and disorders involving the digestive system
Neurologist – A doctor with expertise in treating diseases and disorders involving the brain, nerves, and spinal cord
These specialists may perform additional tests to confirm dysphagia and, if confirmed, help determine whether the condition is due to a problem with the mouth and throat or the esophagus (the tube that carries food from the mouth to the stomach). They may also include nutrition tests. Specialists know the significant role played by caregivers like yourself. Therefore, if the person you’re caring for is found to have dysphagia, they will work with you closely to tailor the treatment and training to suit your needs.
When caring for someone with dementia, mealtimes can be challenging. There are several things to consider: Is the person eating a balanced diet? Are they hydrated? Are mealtimes enjoyable for them? If you notice changes in their behaviour during mealtimes, like swallowing difficulties, talk to your family physician and seek medical intervention. Your attentiveness and early observation of signs of dysphagia can help make mealtimes pleasant again.
References
Sura L, Madhavan A, Carnaby G et al. Dysphagia in the elderly: management and nutritional considerations. Clin Interv Aging. 2012; 7:287-298.
National Foundation of Swallowing Disorders. Caregiver’s Guide to Dysphagia in Dementia. Available from: Caregiver’s Guide to Dysphagia in Dementia | National Foundation of Swallowing Disorders (swallowingdisorderfoundation.com).
Social Care Institute for Excellence. Chewing and swallowing problems in dementia. Available from: https://www.scie.org.uk/dementia/living-with-dementia/eating-well/chewing-swallowing-problems.asp.
Hull University Teaching Hospitals. Swallowing Difficulties in Dementia. Available from: https://www.hey.nhs.uk/patient-leaflet/swallowing-difficulties-in-dementia.
Mayo Clinic. Dysphagia. Available from: https://www.mayoclinic.org/diseases-conditions/dysphagia/symptoms-causes/syc-20372028.
National Health Services. Dysphagia (swallowing problems). Available from: https://www.nhs.uk/conditions/swallowing-problems-dysphagia/diagnosis/.
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