If your loved one has been recently diagnosed with dysphagia and you have inherited the role of caregiver for the first time, you may be feeling confused, worried, or even overwhelmed. It is understandable if all of the new terminology, concepts, and advice you may be hearing from your doctor or even the internet feel intimidating. Although the information you receive from your healthcare professionals or medical websites can be important, sometimes it makes a big difference to hear simple advice from those who have had first hand experience with what you are going through. There is something to be said about connecting with those who have lived through it; in other words, having a caregiver’s guide to dysphagia if you will.
We reached out to caregivers of people with dysphagia and asked them about their experiences, what they have learned, and what they would say to new caregivers. They shared some things that you can expect after your loved one has been diagnosed, how to support your loved one and, most importantly, how to support yourself. If you have been feeling alone or stressed during your time as a caregiver, we hope their words of advice provide answers to some of your questions and bring you a greater sense of certainty in this caregiver’s guide to dysphagia.
What are some things you can expect after your loved one is diagnosed with dysphagia?
A diagnosis of dysphagia can come with many changes to daily life, not only for your loved one, but also for you as a caregiver. Knowing what may come can help you be prepared for those changes and adapt to them more quickly. Some things our interviewees shared included:
- Increased preparation time for meals: You may likely need to prepare texture-modified meals for your loved one that are safer to eat. “Texture-modified” is a term used to describe foods prepared in a different way than usual, such as pureeing, mincing, or selecting foods that are softer to chew. For tips and tricks on how to prepare texture-modified meals that are still enjoyable for your loved one, you can consult this article on sparking joy with food again.
- Taking time off work: Many caregivers share the experience of having to take time off work to make it to their loved one’s appointments and treatment sessions. Having predictable time slots for your loved one’s appointments, as much as possible, as well as discussing this ahead with your employer, can help alleviate stress.
- Mealtimes may look different: Your mealtimes with your loved ones may look very different from what you were used to. For example, some people with dysphagia may need to sit upright, have many napkins close by, have a glass of water handy, or other similar preparations or adjustments. It can be difficult or even unsafe for someone with dysphagia to eat while lying down or while slouching in front of the TV. Distractions such as driving, movies, or even small talk can be difficult for some patients. For some people, mealtimes may look different because their loved one prefers to eat alone, away from the eyes of other people. These sudden changes to typical mealtime routines can be difficult to adjust to; work with your clinician to fully understand why these changes were recommended to your loved one, as this will help you both follow through.
- Your loved one may have less energy: With the nutritional changes of a dysphagia diet can come low energy or even weight loss. Know that the best thing you can do for your loved one at this point is to encourage them to eat according to their recommended diet. It may also be worthwhile to consult a trained professional to ensure that their low energy and weight loss is not related to depression or anxiety, as both can happen in someone recently diagnosed with dysphagia.
How to support your loved one
After being diagnosed, people with dysphagia can experience confusion, anxiety, depression, and even grief over the changes to their life [1]. Everyone’s experience with dysphagia is unique, but there are many ways in which you as a caregiver can provide both emotional and physical support to your loved one:
- Take the time to listen to them: Having a person you can vent your feelings and emotions to can make a big difference for a person with dysphagia. Take a couple minutes each day to check in with your loved one and how they are feeling.
- Be patient and non-judgemental: This tip came from a person with dysphagia who expressed that a major part of the anxiety that comes with mealtimes is the fear of judgment from others. Eating with a partner who is patient, kind, and understanding can help reduce this anxiety and bring some joy back into eating.
- Create a safe mealtime environment: As stated above, mealtimes can be stressful and anxiety-inducing for your loved one. Finding or creating spaces that are quiet, free of distractions, and offer privacy, is a great way to support your loved one during mealtimes.
- Encourage/ remind them to do their daily exercises and take their medication: Sometimes if they are feeling discouraged or unmotivated, all it takes is a little nudge from a person who cares. Setting reminders on your phone or using your Notes app can be helpful to keep track of all treatment schedules.
- Educate yourself on dysphagia: As a caregiver, gaining a deeper understanding of dysphagia can put you in a better position to support and connect with your loved one. One of our interviewees recommended ‘Dysphagia Naturally’, a book by Julia Tuchman, as an amazing resource full of tips, tricks, and advice related to dysphagia. There are also multiple podcasts, blogs, and websites out there that can be helpful for education. You can find a list of these resources at the end of this article.
How to support yourself
With all the new responsibilities and changes to daily life, it is not uncommon for caregivers to experience burnout, exhaustion, or changes in their mood and mental health. One caregiver we spoke with described the beginning of his journey as “the most stressful part of my life”. Unfortunately, caregiver self-care is an area that is often overlooked, despite studies showing that a diagnosis of dysphagia affects the entire family system, not only the person who is diagnosed [2].
When we reached out to our caregivers, we asked them for self-care tips they would give other caregivers going through similar struggles. We compiled their words of advice below:
- Take some time for yourself every day: This can be a great way to reset your mind and give yourself a much-needed brain break. One interviewee shared that daily walks have given him time to reflect and process all the adjustments in his life, and allow him to catch his breath amidst all the ongoing changes.
- Stay connected with friends and family: It can be easy to be consumed by your responsibilities as a caregiver and to isolate yourself from others, but even a simple phone call with a friend can be a big way to stay connected and boost your mood.
- Keep humor in your life: Many have shared that finding things to laugh about with their loved one – like a comedy movie, TV show, or even an ongoing joke – brings joy to their daily life.
- Join support groups for caregivers: Support groups are a great way to connect with others who are going through a similar experience to you. These groups are a place where you can talk openly and honestly about your feelings without fear of judgment, or even share advice, tips, and resources with one another.
- Don’t be afraid to reach out to a psychologist or psychiatrist: Your thoughts, feelings, and moods are valid, and it is important that you get the help you need and deserve.
- If you don’t already have one, get an SLP for your loved one: SLPs (speech-language pathologists) are the preferred provider of dysphagia services [3]. They are trained to recognize the signs and symptoms of dysphagia, make appropriate referrals, and provide dysphagia management. One caregiver shared that after they met with an SLP for their loved one, it relieved some of the stress and responsibility they were carrying on their own shoulders.
- The most important tip – know that you are doing your best: Nobody is perfect, and it is unreasonable to expect that you can do and solve everything. Know that every small thing you are able to do for your loved one and for yourself is still an achievement.
Where do we go from here?
Being a caregiver can be tough. It can be exhausting. But know that this experience has both downs and ups. One interviewee shared that his experience has taught him that the little things don’t matter anymore: “Dirty dishes in the sink, untidy house. None of that even matters. It has really put everything into perspective”. He also reported that his experience as a caregiver has increased his compassion and empathy for others, and even brought him closer to his loved one.
Everyone’s journey is unique, but we hope the tips and advice throughout this caregiver’s guide to dysphagia resonated with you, and have brought you some clarity in an otherwise difficult time. As a caregiver, your efforts are appreciated by those around you whether they know how to say it or not. Being a caregiver can be a difficult and resource-intense position to have; remember that you too need and deserve a network of support.
Resources
- Dysphagia Facts, a Q&A page created by Thick-It
- 7 Things for Caregivers to Understand About Dysphagia Patients, blog by Thick-It
- Understanding Dysphagia, podcast created by Dysphagia Outreach Project
- A Mother’s Perspective on Dysphagia, Dysphagia Matters Podcast Episode 10
- A Caregiver’s Guide to Dysphagia in Dementia, article by National Foundation of Swallowing Disorders
- Losing the Ability to Swallow: How to Help Someone with Dysphagia, blog by Aging Care Home Care
References
[1] Farri, A., Accornero, A., & Burdese, C. (n.d.). Social importance of dysphagia: its impact on diagnosis and therapy. Acta Otorhinolaryngologica Italica : Organo Ufficiale Della Società Italiana Di Otorinolaringologia e Chirurgia Cervico-Facciale, 27(2), 83–86.
[2] Shune, S. E., & Namasivayam-MacDonald, A. (2020). Dysphagia-Related Caregiver Burden: Moving Beyond the Physiological Impairment. Perspectives of the ASHA Special Interest Groups, 5(5), 1282–1289.
[3] American Speech-Language-Hearing Association. (n.d.). Adult Dysphagia.
