A First-Person Account of Caring for a Parent With Dysphagia.

Abstract

Purpose: Research has shown that caregiver burden is compounded by dysphagia experienced by the care recipient. However, little is known about the caregiver perception of the caregiving experience, highlighting both the positive and negative experiences. As such, the purpose of this clinical focus article was to provide a first-person account of an adult caregiver of an aging parent with dysphagia and relate their experiences to current literature to inform clinical practice.

Method: The caregiver provided a detailed account of her experiences caring for her father with dysphagia. Her account was analyzed to identify recurring themes in the literature regarding the caregiving experience and to identify gaps in dysphagia-related caregiver support. The caregiver's story is organized into seven main sections: (a) life before dysphagia, (b) dysphagia onset and diagnosis, (c) dysphagia management and support, (d) community support, (e) impact on family relationships, (f) social and emotional health, and (g) current perspectives on the caregiving experience.

Conclusions: The challenges associated with caregiving clearly impact the caregiver's overall well-being, but she received abundant support from her family, community-based speech-language pathologist, and caregiver support groups. The caregiver's experiences, while not applicable to every caregiver caring for a loved one with dysphagia, can offer valuable insights to clinicians and other caregivers facing similar situations.