Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Health and Rehabilitation Sciences

Supervisor

Savundranayagam, Marie Y.

Abstract

There is limited literature focused on formal caregivers’ communication with persons living with dementia (PLWD) in home settings. Yet, there is an expected need and demand for formal caregiver support within home care. Thus, the aim of this hermeneutic phenomenological study was to understand better the lived experiences of personal support workers (PSWs) during their communication with PLWD in home environments. Three major themes were identified through thematic analysis of semi-structured interviews (N=15): (1) challenged by dementia-related impairments; (2) valuing communication in care; and (3) home is a personal space. Findings reveal that PSWs experience difficulties communicating with PLWD, despite recognizing the importance of communication in providing optimal care. The findings suggest that while PSWs possess good intentions, they do not possess the skills necessary to ensure effective interactions. Findings have implications for optimizing practice and enhancing quality of care.

Summary for Lay Audience

Dementia is a general term used to describe a collection of symptoms that are caused by diseases that affect the brain. Numerous diseases can cause dementia, including Alzheimer’s disease, Parkinson’s disease, and stroke. Symptoms of dementia include, but are not limited to, memory loss, confusion, communication problems and difficulties with thinking. Difficulties with communication impact caregivers who provide care for persons living with dementia. The current study aimed to understand better the lived experiences regarding communication between formal caregivers, specifically personal support workers, and persons living with dementia who reside in their own homes. The study focused on the home care environment because there is a lack of literature focused specifically on the experiences of communicating within the formal home care setting. Much of what is known currently comes from long-term care home settings, or informal home care contexts. However, it is expected that more formal home care will be provided to PLWD in their own homes. One in-depth interview was performed with each participant (N=15) in the study. Three themes were identified: (1) challenged by dementia-related impairments; (2) valuing communication in care; and (3) home is a personal space. Findings suggest that PSWs need additional education and training in order to enhance their communication skills and to improve the overall quality of care provided to persons living with dementia. Similarly, findings suggest that family caregivers of PLWD require dementia-related education and training, as well as resources outlining effective communication strategies to use with their relative living with dementia. Home care agencies can provide these resources to family members of PLWD, and should support PSWs further by offering continuing education and training, providing information regarding clients’ social history, improving and standardizing documentation procedures, ensuring continuity of care, and reducing employer-level barriers experienced by PSWs in relation to accessing education and training opportunities.

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