A qualitative exploration of family carer’s understandings of people with dementia’s expectations for the future

Abstract

Background There is little evidence that outlines how family carers understand the person with dementia’s perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim This research aimed to explore and describe family carers’ experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia’s expectations for the future and what they believed was important for the person to whom they provided care. Method Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers’ perspectives of the changing nature of decision making during the dementia trajectory. Conclusion Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is ‘person centred’ now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.

Family carers’ expectations regarding dementia care services and support in China: A qualitative study

“…Therefore, providing interventions to support carers is needed to tackle these challenges, which requires an understanding of their expectations regarding dementia care (Davies et al, 2020; Kampanellou et al, 2019). Previous research has focused on the expectations of people with dementia (Read et al, 2017), carers’ understanding of their relative’s expectations (Read et al, 2021) and expectations regarding formal care (Kiljunen et al, 2018). It is reported that people with dementia are concerned about the loss of functional capacity and uncertainty about the future (Read et al, 2017).…”

“…It is reported that people with dementia are concerned about the loss of functional capacity and uncertainty about the future (Read et al, 2017). To address issues that align with the diagnosis, carers help sustain their relative’s quality of life, independence and decision making (Read et al, 2021). However, there is a paucity of evidence into carers’ expectations of dementia care.…”

The Remote Assessment and Dynamic Response Program: Development of an In-Home Dementia-Related Care Needs Assessment to Improve Well-Being

“…First, READyR assesses the care values of the person living with dementia, or what is most important to the person living with dementia. This information is critical to knowing the person living with dementia, and has been identified as an essential element of planning for future care ( Lord et al, 2020 ; Read et al, 2021 ). Practically speaking, knowing what is most important to the person living with dementia helps to focus the dementia care needs assessment on the areas most central to each individual’s well-being, rather than attempting to give equal attention to an extensive and often overwhelming inventory of potential care needs.…”