Following Acquired Brain Injury dysphagia can have a significant social impact upon the person with brain injury and their family. Dysphagia can have a major impact on the person’s quality of life and feelings of general wellbeing:
- Eating/drinking is important for pleasure and quality of life. Changes to this ability can be life changing and deeply distressing for the person.
- Being able to independently choose what to eat/drink, when to eat/drink and who with is another important contributory factor to the person’s quality of life. These choices may be limited by the impact of dysphagia itself, but may be further curtailed if the person is living in a hospital, rehabilitation unit or other care setting.
- The person with dysphagia is likely to have significantly reduced menu options when going out for meals, when at home with family/friends or living in a care setting.
- Much social interaction occurs in contexts that include food and drink (family meals, visits to pubs, cafes etc). Enjoying food and drink with others is important for getting to know people, maintaining relationships and for normal, everyday social interaction. Dysphagia may impede the person’s ability to enjoy and benefit from this type of social opportunity.
- The person may experience physical difficulties which make it difficult for them to cope with the social aspects of eating/drinking e.g. if the person:
- Coughs/chokes throughout the meal.
- Can only eat/drink very slowly, unlike their companions.
- Requires thickener added to their drinks.
- Has difficulties remaining clean and tidy at meals because of the impact of dysphagia or other physical impairments Link to (e.g. spilling food, losing food/fluid from mouth).
- Has increased dependency on others such as needing food mashed/cut up, requiring assistance with feeding.
- Requires specialist equipment to support eating/drinking (e.g. modified cutlery and crockery, spouted mug).
It is helpful to try to understand the perspective of the person who has dysphagia. For example, the experience of dysphagia can be:
- Frightening: Aspirating, coughing, choking and difficulties managing to take
food and drink can be frightening and extremely uncomfortable. - Depressing: Not being able to eat or drink what you want, struggling with the process of eating/drinking or not liking the recommended modified diet can be very upsetting and distressing.
- Embarrassing: Problems caused by dysphagia and other physical impairments may be perceived as embarrassing by the individual or by the people trying to support them.
- Confusing: Cognitive problems affecting the person’s understanding of dysphagia and its implications can be confusing and add to distress.
- Frustrating if dependent on others for providing food/drink and/or help to eat/drink.
The person who has very severe dysphagia may be extremely distressed if unable to take nutrition orally and requires nutrition to be provided via enteral methods (i.e. tube feeding). Some of the reasons for this may include:
- Loss of the positive experience of eating and drinking.
- Loss of the social pleasure of eating/drinking with others.
- Oral discomfort/dry mouth which can be exacerbated by dysphagia and by non-oral feeding.
- Feelings of confusion/anxiety/fear related to enteral feeding.
- The presence of a nasogastric tube or percutaneous endoscopic gastrostomy (PEG) tube may be upsetting, uncomfortable or even painful.
Dysphagia can therefore significantly contribute to:
- Reduced quality of life: So much of the pleasure we get in life comes from eating, drinking and sharing these times with friends and family.
- Less or changed social opportunities: Being worried about eating out, going for a drink or not being able to get pleasure from these activities can restrict social life considerably.
- Reduced enjoyment of food/drink: The pleasure the person experiences from food/drink may be limited if they require a modified diet and find the recommended food/drink options unattractive and unappealing.
Eating and drinking as a meaningful source of pleasure, choice and control may be negatively affected by the impact of dysphagia following brain injury. This is likely to be exacerbated by living in a hospital or other care setting. Therefore dysphagia can contribute to reduced opportunities for socialising, increased social exclusion and have a negative impact on wellbeing and quality of life. However, the person with dysphagia will enjoy social opportunities if appropriate measures are implemented. Advanced planning and necessary support can be put in place in order to facilitate a valued, normal social event.
