How does an individual with dementia experience communication and interaction with healthcare professionals (HCPs)? A narrative analysis of an online blog of a person with dementia.

Problem

Effective communication between HCPs and service users is integral to assure high-quality, patient-centred healthcare, facilitating insight into the improvements to services and communication required. A patient-centred approach to communication can support and empower people living with dementia to make fitting care related decisions to augment their quality of life, whilst cognitive function is preserved. Despite systematic reviews on communication in dementia care, and research on the experiences of HCPs in communication in dementia, there is little available narrative research on the experiences of an individual with dementia when communicating with HCPs. This is key to understanding how a narrator interprets their experiences and moulds their identity, by analysing a story’s structure and essence. Therefore, narrative analysis of a blogpost written by an individual with Alzheimer’s dementia was undertaken, to explore and understand in depth the author’s experiences of communicating with HCPs.

Approach

Blog posts following a defined narrative structure, were selected from five pages of three targeted internet searches. Based on inclusion and exclusion criteria, a two-part blogpost was selected for analysis. It encompassed the experiences and feelings of the author and the impact of communication with HCPs. Polkinghorne’s model of narrative analysis was combined with Mishler’s model of Textual Coherence and Structure for the analysis of this narrative in its entirety.

Findings

The lack of availability of video consultations, combined with the rapid speed of conversation during telephone consultations impeded the narrator’s involvement in communicating with HCPs on multiple occasions. This resulted in second-hand delivery of information via family members, despite her expressed desire to converse via videocall. She appears to construct feelings of exasperation and despondency in her narration, by being unable to actively partake in consultations. Additionally, she experienced numerous changes, to appointment bookings, without explanation, prompting confusion and frustration.

The narrator’s attempts to directly communicate with HCPs including her General Practitioner were unsuccessful, resulting in a challenging and unfavourable experience overall. She wrote:

“Once again the patient has to fit into services the way they want to deliver them and not offer a choice that might be more beneficial to the patient.”

Consequences

The narrative depicts the importance of involving a person with dementia in their own care and the possible emotional consequences created by the hurdles to clear communication with HCPs. Further research would focus on narrative analysis of successful, positive HCP communication experiences. Additionally, the experiences of individuals with dementia and their relatives, of virtual communication (through video consultations) and in person interactions with HCPs, during the COVID-19 pandemic would be included. This will enable a richer understanding of the impacts of the mode of communication on the experiences and perceptions in these settings.