Collecting data on the experiences and perspectives of people with dementia in the acute care hospital setting: A systematic scoping review.

BACKGROUND: People with dementia frequently experience poor health outcomes that require hospitalisation; however, the hospital setting is generally unsuitable for these patients. While it is well-recognised that understanding patient perspectives is crucial to providing person-centred care, current clinical care guidelines do not describe how to effectively collect feedback from people with dementia. Historically, people with dementia have generally been neglected from data collection exercises among practitioners and academic researchers, alike. OBJECTIVE: The objective of this review is to describe the data collection processes from peer-reviewed evidence sources that include direct consultation with, and elicit feedback from, patients with dementia about their care experience in the hospital setting. METHODS: The protocol for this systematic scoping review was pre-registered (https://doi.org/10.6084/m9.figshare.16614667.v1). The review considered primary quantitative and qualitative research involving people with dementia as research participants, regarding the quality of hospital care from the patient's perspective. Four databases were searched (MEDLINE, CINAHL Complete, APA PsycINFO and Embase), with 14 studies meeting the eligibility criteria. RESULTS: There has been an increased interest in gaining the perspectives of people with dementia on their health care over the past 5 years. Sundry methodologies were employed by these studies, but most used informal qualitative interviews to support and enable participants with diverse symptoms and functional abilities to take part. Procedures concerning recruitment, ethics and consent, and data collection processes were, likewise, varied and not reported consistently across this body of evidence. CONCLUSIONS: People with dementia can be meaningfully consulted as research participants in the hospital setting. Increased rigour when reporting the methodologies and strategies used during data collection is needed to provide guidance for health services and researchers to further enable the inclusion of people with dementia. IMPLICATIONS FOR PRACTICE: Including people with dementia in data collection endeavours in the hospital setting is essential to improving health outcomes, increasing equity and providing better hospital service delivery to this vulnerable cohort.

The role of day-respite centres in supporting people with dementia to age in place: An interpretive phenomenological study.

ISSUE ADDRESSED: Day-respite care opportunities for people with dementia help prevent informal carer burnout and enable ageing in place. Care workers in these settings are an under-researched workforce who play a pivotal role in providing an engaging and supportive environment for clients with dementia. This study aimed to understand their experiences of providing care for people with dementia. METHODS: An interpretive phenomenological analysis explored the factors that challenge and enable day-respite centre workers of the sole facility in one regional Australian town to provide, what they perceive to be high-quality, person-centred care for people with dementia. Thematic analysis revealed four themes relating to the experience of providing care to people with dementia in this day-respite centre. RESULTS: Care challenges associated with the symptoms of dementia were recognised by participants; however, these issues were mitigated by the powerful enabling factors, including a strong focus on dementia-friendly care, operating within the centre. Thematic analysis yielded four themes of a person-centred workplace culture and strategy, embedded communication practices, provision of a safe and engaging environment and positive staff attributes. These themes were perceived to make participants' jobs more enjoyable, as well as improve their clients' and carers' quality of life. CONCLUSIONS: Day-respite centres offer a valuable resource for people with dementia and their carers, and their success depends on several key environmental and workforce factors. Accordingly, other facilities targeted at caring for this population should assess the feasibility of adopting similar strategies, including selecting and training specialised care staff, adapting the care environment to suit clients' physical and behavioural needs. and establishing routine multi-channel communication methods that effectively connect staff with other care providers, their clients, and their clients' carers. SO WHAT?: The lessons learned in this research could be implemented throughout the wider web of dementia care. Strategies might include the careful selection and training of staff; the provision of dedicated, safe dementia-friendly wards; and routine communication key stakeholders to ensure met-needs care. While there would be a need to scale such care to suit different individual care providers, even seemingly simple strategies would likely have positive effects in optimising care for people diagnosed with this debilitating neurocognitive disease.