Aug 28, 2020
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.