‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis


Each month, Professor Catherine Walshe, Editor-in-Chief of ‘Palliative Medicine’, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’, or EAPC members can access a free copy from the EAPC website.

Today, Dominika Lisiecka, PhD, Lecturer, Department of Nursing and Healthcare Sciences, Institute of Technology Tralee, Ireland, gives the background to her longer article selected as Editor’s Choice in the September issue of  ‘Palliative Medicine’.

Dominika Lisiecka.

My journey with Amyotrophic Lateral Sclerosis (ALS) started approximately 15 years ago when I was working in an acute hospital in Ireland. As a newly qualified speech and language therapist I was often overwhelmed with the complexity of the management of this disease. In line with my professional background, I was focusing on both communication and swallowing impairments (dysphagia), but the medical safety that can be impacted by dysphagia was a clear priority for me at that time.

Later on, people living with ALS taught me how to respect their quality of life and balance risks related to dysphagia. I often thought about the caregivers, always present in my office but situated in the background. I had limited clinical resources and no time to investigate their journey, my focus was supporting the person with ALS. My interest in the caregivers of people with ALS continued to grow over the years and I knew that my PhD research would include this population.

In 2015, my research project investigating the experiences of dysphagia for both people with ALS and their caregivers was awarded a research fellowship from the Health Research Board in Ireland. I was fortunate to work with Dr Helen Kelly and Prof Jeanne Jackson (both from University College Cork) as my supervisors. Part of our research culminated in the article recently published in ‘Palliative Medicine’: ‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – a qualitative study. This article presents data collected through multiple interviews and observations of family caregivers of people living with ALS and dysphagia. Data analysis revealed that ALS significantly transformed the lives of the caregivers. They were unsure how the disease was going to progress and had to balance their caregiving duties with other obligations and family responsibilities. They were often exhausted, lonely, and frustrated. Despite their best efforts it was not possible to stop the deterioration of their loved one or to cure ALS.

How did the presence of progressive dysphagia influence their lives? The caregivers were very aware of the risks associated with dysphagia and attempted to constantly support the person with ALS during meals. They were afraid of the probability of their loved one choking and were unsure how to mange any choking episodes at home. Their own relationship with food was affected; food was no longer a source of pleasure but something dangerous.

Kay: Because she [her mother] could be sitting on there and she’d be coughing and next minute you’d have to tap her on the back and I’d be going Jesus is it stuck? (…) You were uneasy all the time when she was eating because do you know you’d be kind of watching was it going down or was it staying and getting stuck. (lines 248-253)

What is the relevance of our paper for healthcare professionals? It describes how dysphagia affects caregivers of people with ALS and how it disrupts their lives. The caregivers’ ability to cope with dysphagia depends on many factors. As caregivers are often the key people supporting the person with ALS and carrying out professionals’ recommendations, their work should be recognised.

Healthcare professionals should not only focus on the person with ALS when managing dysphagia, but also consider and include the needs of the caregivers.



This post relates to the longer article, ‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study, by D Lisiecka, H Kelly, J Jackson; published in Palliative Medicine  2020, Vol. 34 (8), pages:1097-1107. Article first published online June 17, 2020. Issue published September 2020.  https://doi.org/10.1177/0269216320932754


If you are currently an Individual or Associate EAPC Member you have full access to the Members Only Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too.  Just click here, enter your email address and membership password and choose from the list of journal articles.

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This entry was posted in Carers, EAPC-LINKED JOURNALS, Neurology, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE and tagged , . Bookmark the permalink.

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