Dysphagia Patients’ Emotional Health – How Can We Reduce The Stress Right Now?
By Sumathi Sinnappan, dysphagia specialist and speech and language therapist.
With three quarters of care home residents reported to suffer from dysphagia, these are worrying times.
Not only are patients having to come to terms with their swallowing difficulties, they’re also hungry for information and in many cases, in need of urgent treatment.
Yet compared to other conditions, readily accessible details, beyond a cursory internet search, remain relatively sparse. Left untreated, dysphagia can lead to possible malnutrition and that can also mean an increased chance of clinical depression.
As a pandemic takes hold, some dysphagia patients may confuse their symptoms with a much more serious condition, leading to even more stress.
People are understandably anxious faced with an overworked NHS that can’t see them or adds them to a monumental waiting list. Or, due to their age, they may feel they don’t want to make a fuss or a be burden.
That’s on top of the demands of living with a condition that’s perceived as a decline in dignity, and for some, still a bit of a taboo.
In my work with dysphagia patients, under normal circumstances, sessions are repeated between three and five times a week until swallowing patterns have improved and restored to a near normal or normal level. Sufferers see improvements in six to 20 daily sessions, sometimes, thanks to specialist VitalStim technology, in as little as three days.
As a specialist in dysphagia since 2005, I’ve seen the massive difference the right help can bring, changing lives for the better, finding new joy for people who feared they may never swallow properly again. I’ve worked diligently with this advancing technology to improve things greatly.
I’ve watched with pride as patients go on to enjoy a hearty meal without a feeding tube.
I’m not the only one. Without the current pressures and national lockdown to contend with, there’s good medical provision in place.
But as an independent consultant specialising in dysphagia and acquired neurological conditions, I fear for the effect of the pandemic and lockdown on patients’ emotional health. Would you want to spend this time concerned by a declining ability to communicate? Was there ever a worse era for this to happen? My heart goes out to patients who’ve been unable to access the help they undoubtedly need.
‘Nobody is listening to me, my family don’t want to know,’ one patient confided. Who could blame them?
Bafflingly, for the general public at least, the term dysphagia and its symptoms are not as widely known as they could be. This also adds to uncertainty and fear from a newly-identified sufferer or for all of those in the limbo of waiting a diagnosis and appropriate rehabilitation therapy, monitoring of patients, or intervention.
The fact that swallowing difficulties have also been identified as potential signs of Covid-19 is even more frightening for people of an advancing age or with other underlying health conditions. Being confined to lockdown and not being able to see loved-ones is bad enough, or being hit by bereavement.
HOW CAN WE HELP? Awareness and peace of mind:
Patients need to feel listened to and access reli- able information about the severity of their dysphagia. I’d advise limiting online research and self-diagnosing or ‘doom scrolling’ Stick to trusted sites such as the NHS or find support groups online.
Identifying those most at risk:
Older adults are undoubtedly more at risk due to an ageing body. Certain diseases of old age can cause dysphagia. Up to half of stroke patients are reported to develop some degree of dysphagia. A fifth of vascular dementia patients experience dysphagia.
This suggests that around 37,000 people suffer dysphagia due to vascular and mixed dementia in the UK. Patients with degenerative central nervous system disease often develop some degree of dysphagia.
Dysphagia also commonly occurs following radiation therapy for head and neck cancer, traumatic head or spinal cord injury, tracheotomy, burns and meningitis. It is also common in people with congenital or degenerative neurological diseases, such as Parkinson’s disease, Multiple Sclerosis, Cerebral Palsy and Chronic Obstructive Pulmonary Disease. Knowing the signs
The NHS says:
Some people with dysphagia have problems swallowing some foods or liquids, while others can’t swallow at all.
Other signs of dysphagia include:
• Coughing or choking when eating or drinking
• Bringing food back up, maybe through the nose
• Sensation that food is stuck in throat or chest
• Continuous drooling
• Inability to chew
• ‘Gurgly’ wet sounding voice when eating or drinking
• Weight loss
• Repeated chest infections
• Breathing difficulties
These can also be signs of aspiration pneumonia which occurs when food, saliva, liquids, or vomit are breathed into the lungs or airways, instead of being swallowed into the oesophagus and stomach. Urgent medical attention is needed.
This can also lead to malnutrition which has additional symptoms of:
• Reduced appetite
• Lack of interest in food and drink
• Feeling tired all the time
• Feeling weak
• Getting ill more often, and taking longer to recover
• Depression or low mood
• Sensitivity to cold temperatures
• Poor concentration
• Wounds take longer to heal
The following are recommended:
Changing consistency of food and liquids to make them safer to swallow – there are seven levels of how solid foods and liquid should be, formulated by the International Dysphagia Diet Standardisation Initiative (IDDSI).
Other forms of feeding – such as tube feeding through the nose or stomach
Surgery to widen the oesophagus, by stretching it or inserting a plastic or metal tube (stent)
Nutritional requirements and adjusting texture
It can be difficult to meet your body’s need for good nutrition when you have swallowing difficulties. It may take longer for you to finish a meal and some- times soft meals. Food becomes less appealing with no appetite.
If you have been sick, it’s particularly important to make sure that you eat and drink enough every day. This is important to help prevent unnecessary weight loss and to help regain any weight you may have lost already. Hydration is another important factor.
SOME GOOD ADVICE:
• Try adding extra calories and protein to meals to make them as nourishing as possible. A nutritionist can give the right advice based on the patient’s condition.
• You may be recommended to take oral nutritional supplements. These are high in calories, protein and other important nutrients and can help you meet your nutritional requirements.
Treatment may include:
• Oral exercises to improve swallow muscles.
• Medicine
• Changing texture and consistency of food
• Dilation
• Surgery.
I help patients by:
• Teaching exercises to improve swallowing ability • Training how to eat and drink in a safer and more comfortable way.
• Showing how to make foods and liquids easier to swallow.
• Neuromuscular electrical stimulation to the oral and pharyngeal muscles to re-educate and strengthen the swallow muscles.
TIPS FOR PATIENT MANAGEMENT AND TRAINING:
Posture: Sitting upright when eating or drinking is key. If that’s not possible, adjusting their back or helping them hold their head up when eating and drinking is important.
Eating: To avoid the exhaustion a normal length mealtime may bring; I’d advise eating little and often throughout the day.
We may not be able to wipe out all the frightening emotions sparked by dysphagia right now, but a knowledgeable and empathetic approach will help soothe understandable fears. A listening ear and a supportive caring presence go a long way. Let’s be there for each other, even if we have to be physically distant.
Read more about the IDDS here: https://iddsi.org/
