Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers

Abstract

A qualitative study was conducted to examine the experiences of informal caregivers of persons with dementia pertaining interprofessional collaboration with and among healthcare professionals in home care (HC), nursing homes and during home to nursing home transitions in palliative care. Semi-structured interviews were performed with bereaved informal caregivers. Data were analysed using a critical realist approach. The two main themes that emerged were: ( 1) Informal caregivers’ roles in interprofessional collaboration with healthcare professionals and ( 2) Informal caregivers’ perception of interprofessional collaboration among healthcare professionals. Informal caregivers’ roles were identified in three collaboration processes: information exchange, care process and shared decision-making. Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level (e.g. being up to date with the health status of the person with dementia; acting proactive, being adequate and consistent in the care process; and giving a warm welcome) than on the collaboration processes level (e.g. communicating and being involved in team processes). Our study revealed that intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers’ collaborative roles. In summary, our study showed that informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.

Improving Dementia Caregiver Activation With a Brief Communication Module

“…31 Dementia caregivers are essential members of the care team and serve a critical role in exchanging information, communicating about care processes, and engaging in shared decision-making. 7,32 Dementia caregivers in particular express that they wish to communicate with healthcare providers early in the illness trajectory to improve their knowledge and skills so they may anticipate upcoming challenges as end of life nears. 33 Early communication enables caregivers to understand medical terminology, share information, express their concerns, and speak up when they are unable to provide care.…”

“…2 Feeling unsure about what to say and what not to say impedes caregiver collaboration with providers and results in limited information exchange. 7,8 Consequently, dementia caregivers have a higher need for support compared to other caregiving populations. 9 There is high uncertainty among dementia caregivers about future care needs and they seek healthcare provider guidance on options for care at home or placement within the community.…”

Swaying Information about Care: Information-Sharing Challenges in Transitional Care of Older Adults

“…Khemai et al discussed information exchange in informal caregivers' roles in interprofessional collaboration with healthcare professionals. In information exchange, informal caregivers play the role of bridging the gap that occurs between healthcare professionals; moreover, the care needs and preferences of the person with dementia are not considered [33]. In addition, they reviewed the results of several studies [4,[34][35][36] and found the most effective transition to an optimal nursing home for a person with dementia.…”

“…In addition, they reviewed the results of several studies [4,[34][35][36] and found the most effective transition to an optimal nursing home for a person with dementia. The elements that facilitate effective transition were found to include the collection of all information about the person with dementia and the transfer of information between nursing homes [33]. Other studies showed that communication and cooperation between specialties and services are not dementia-sensitive [37]; a study that investigated the complexity of transitional care for people with dementia emphasized the importance of parallel experiences shaped by anecdotes from others, i.e., the experience of receiving information sharing [35].…”