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

SAGE Palliative Medicine & Chronic Care

This episode features Dr Dominika Lisiecka (Department of Nursing and Healthcare Sciences, School of Health and Social Sciences, Institute of Technology Tralee, Tralee, Ireland). Amyotrophic lateral sclerosis causes multiple neurodegenerative symptoms including dysphagia, which impacts on person’s ability to eat and drink in a safe way and can contribute to chest infections, pneumonia and death. Family caregivers play an important role in managing a person with amyotrophic lateral sclerosis, but little is known about how dysphagia impacts on their own lives. Managing progressive dysphagia can be a huge challenge for caregivers of people with amyotrophic lateral sclerosis and can lead to multiple psycho-social consequences. Caregivers may be extremely concerned about the safety of a person with amyotrophic lateral sclerosis during meals and fearful of choking. Dysphagia transforms caregivers’ perception of food. The caregivers’ approach to dysphagia may depend on the duration of caregiving and the caregiver’s relationship with the person with amyotrophic lateral sclerosis. Caregivers of people with amyotrophic lateral sclerosis need support from professionals to manage dysphagia at home. In particular, advice should be provided in relation to managing adverse episodes, such as choking at home. Professionals delivering services for dysphagia should find ways to recognise and address the needs of the caregivers of people with amyotrophic lateral sclerosis rather than focusing on the person with amyotrophic lateral sclerosis alone.