When a person has a big medical event or requires support in their old age, there is a lot of talk about their caregivers; but what is a caregiver? A caregiver can be anyone who provides care for a person including spouses, adult children, close friends or neighbours, paid carers or anyone else that might fill this role. The caregivers in a person’s life are often telling of their age, context and culture. A younger person’s caregiver might be their parents, partner or other family members. A middle aged or elderly person’s caregiver might be their spouse, should they be in good health themself, or their adult children, possibly even grandchildren. Professional carers are often involved with those who are funded by council or government schemes in addition to informal support networks such as family or friends.
Care can be defined by many things and is not limited to personal care like showering and dressing. Care can be defined as menial tasks to maintain the household like cleaning, taking out the bins, paying the bills, driving someone to appointments and… preparing meals.
Considering that we eat three meals a day, and if you are unable to buy time and effort with pre-packaged ingredients, meals or take away options then it can be a real commitment to prepare modified foods for all meals. Sometimes this preparation is in addition to a Regular diet for the caregiver themself and/or other family members.
What can often end up happening is that the caregiver or person preparing meals tends to adjust their own diet to the needs of the person with dysphagia, at times, resulting in their own consumption of modified meals. This can reflect changes to the both people's routine such as how often they go out to socialise over meals and a drink. This is especially the case if it’s not an accessible means of socialising for the person with dysphagia. Having previously discussed the social-emotional impact of dysphagia on a person and how it impacts their options of socialisation, sense of connection, self image and esteem and mental health, we must also consider how the same tolls take effect on the caregiver or family members by extension, not to mention the process of disenfranchised grief for both parties that is associated with any big medical event and subsequent life change.
Other changes to the caregiver’s routine might be a result of how much time is committed to preparing meals and what it does or doesn’t leave time for each day. This might be as simple as an extra trip to the shops per week, skipping that afternoon walk or having time to watch the latest episode of their favourite tv series. Although they may be willing and committed to the wellbeing of their loved one, it can sometimes affect the time and activities usually dedicated to themselves as a means of finding joy and taking time for health and self care.
To broaden the lens, dysphagia can make all kinds of disruptions to a person’s life, the above points are only two examples. Of course, it is all about how you handle these changes and we must acknowledge that a mild dysphagia will have significantly less impact on a person’s lifestyle versus a moderate or severe dysphagia. However, we should also acknowledge the challenge of trying to maintain familiar routines and a sense of ‘normalcy’ during a change that can be disruptive to lifestyle, self image, personal relationships and social-emotional wellbeing.
On the note of severities of dysphagia, there are some correlations being drawn between dysphagia related factors and the impact they have on the caregiver's role. Some of the factors being discussed in the literature include feeding tubes such as nasogastric (through the nostril to the stomach) and PEG (an external feeding tube through the stomach wall) and “feeding related behaviours” that is often present in conditions such as dementia or where a cognitive element is involved in the condition.
When dysphagia is acquired through a certain health condition, whether it be slowly progressing or a sudden change, there is generally a process of education that is completed with the speech pathologist to ensure that the person with dysphagia and the caregiver understand the kind of food that is deemed appropriate and safe and that they are able to access that on return home from hospital or clinic, be that through pre-packaged meals or made fresh in their own kitchen. How deep and comprehensive that education process goes can be dependent on the context i.e. an acute hospital versus a community clinic; and the capacity of the service i.e. private versus government funded services, extensive waitlists, remote versus local service provision. This is a part of the process that can really make or break the experience as carer burden has been linked to the mismatch between the expectations of supporting someone with dysphagia and the reality of it all. This is why I believe it is so important to have access to groups, discussions, support and community forums that offer advice and insights, be they online or in person.
Another factor that one might think is a fairly obvious one is the fear of choking. However, the fear often goes unsaid and can be a rather distressing idea for the person with dysphagia and the caregiver. The fear of choking often brings apprehension and anxiety to food preparation and mealtimes, especially if a person feels responsible for someone else's safety because it’s their role to prepare the modified food. This is why it’s so important to build confidence through education and resources when learning to prepare modified foods and apply recommendations before disengaging from a healthcare service.
At the end of my research on this topic, what was visibly clear and often concluded in the literature is that there are no clear cut reasons or factors that are sure to cause burden for those caring for people with dysphagia but that we know is that there are a multitude of factors that contribute to the experience of caring for a person with dysphagia. Many of these things can be moderated with attention and planning, alleviating the challenges, but other factors are out of our control. Although this should, and likely is, being further investigated, it’s important to keep the dialogue going and provide access to supports and resources that will make life easier and more manageable for those living with dysphagia and their caregivers- just like we try to do here at The Fourth Place ✨
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