Communication in home care: Understanding the lived experiences of formal caregivers communicating with persons living with dementia

Abstract

Background:Little is known about formal caregivers' lived experiences communicating with persons living with dementia (PLWD) who live in their own homes. Most information comes from research conducted in long-term care settings or home care settings involving family care partners. Yet, there are expected needs and rising demands for formal caregivers to provide support within clients' homes.Objectives: Accordingly, this study aimed to understand the lived experiences of personal support workers (PSWs) regarding their communication with PLWD who live in their own homes. Methods:The study was grounded in a hermeneutic phenomenological research approach. Data were collected as part of the Be EPIC project, an evidence-informed, person-centred communication intervention for PSWs caring for PLWD. One, indepth semi-structured interview was conducted with each of the PSWs (N = 15).Thematic analysis was completed on the interviews. Results: Three major themes emerged: (1) Challenged by dementia-related impairments; (2) Valuing communication in care; and (3) Home is a personal space. Findings revealed that PSWs experience difficulties communicating with PLWD because of dementia-related impairments, despite PSWs recognizing the importance of communication when they provide optimal care in the homes of PLWD. This suggests that PSWs view communication as a crucial component of quality care but do not possess the skills necessary to ensure effective interactions. Findings also demonstrated the importance, uniqueness and impact of the personal home space on PSWs' experiences with communication. Conclusion: Overall, findings indicate that PSWs acknowledge the importance of communication as an integral element of providing optimal care, but dementia-related impairments and the intimate, personal home-based care context can hinder successful communication between PSWs and PLWD. The implications of the findings are that additional and targeted education and training are required for PSWs, especially on how dementia-related impairments impact communication within the context of home care based services for PLWD.Verbal repetition 'And of course every day they ask me the same questions'. (PSW09) '…they would say the same things over maybe 2 and 3 or 4 times…each day'. (PSW16) Verbal aggression 'And she would scream the whole time'. (PSW11) 'And he loves the F-word. That's common with them, though.' (PSW14) Slurred speech 'Or she's slurring words…' (PSW17)Reverting to native language '…so they go back to the first thing they knew which was their dialect or something so they don't speak the English… They just speak their dialect'. (PSW15)a Persons living with dementia.b Personal support workers.

Diabetes management in people living with dementia in Japan: a qualitative exploration

“…Other studies conducted among the personal support workers of PLWD highlighted the communication difficulties and challenges of caregivers with PLWD. [5][6][7] However, the emerging concept of community-based dementia care might be effective for the continuity of care. 20 Some researchers have suggested collaborative, multi-sectoral dementia care, 21 which can be applied to DM management among PLWD.…”

“…The authors of that study also focused on the challenges of communication and lack of access to health care by PLWD. Other studies conducted among the personal support workers of PLWD highlighted the communication difficulties and challenges of caregivers with PLWD 5–7 . However, the emerging concept of community‐based dementia care might be effective for the continuity of care 20 .…”

“…In addition, the health, and long‐term care management of PLWD are often challenging. Understanding the perspective of PLWD, their family members, and care providers and proper communication between them might play an important role in this aspect 7,8 . For that, it is important to understand the perception of the care providers on the management of chronic conditions such as DM in PLWD.…”

Towards defining quality in home care for persons living with dementia

“…Conversely, knowing and relating well to persons with dementia were indicators of quality care. Recent study findings found that PSWs can identify person-centred approaches to care as essential to quality dementia home care; however, time constraints, task-oriented models of care, and limited training make it challenging to deliver a high standard of care [ 16 , 42 ]. Simply increasing home care hours without investing in a system and cultural change—embracing tenets of personhood, increasing PWS wages, and providing dementia-specific education and quality standards—will not result in better outcomes [ 16 , 43 , 44 ].…”

Language-Based Strategies that Support Person-Centered Communication in Formal Home Care Interactions with Persons Living with Dementia

“…Finally, as the proportion of persons living with dementia receiving care at home increases, attention to home care practices should be intensified. PSWs who shared their communication experiences with persons living with dementia emphasized that time constraints and heavy workloads in long-term care hindered meaningful interactions; they preferred home care because of one-on-one interactions and more time allotted for care provision (Kamalraj et al, 2021). Consistent with this finding, home care PSWs in the present study used far more person-centered language than long-term care PSWs (Savundranayagam & Moore-Nielsen, 2015).…”