Exploring access to community care and emergency department use among people with dementia: A qualitative interview study with people with dementia, and current and bereaved caregivers.

OBJECTIVES: Emergency department (ED) attendance is common among people with dementia and associated with poor health outcomes. Literature suggests a link between access to community care and the ED, but we know little about the mechanisms behind this link. This study aimed to explore experiences of accessing community and emergency care among people affected by dementia. METHODS: Informed by critical realism, semi-structured online and telephone interviews were conducted with people with dementia and family caregivers, with and without experience of using the ED. Participants were recruited from across the United Kingdom using purposive sampling with maximum variation. A mostly experiential reflexive thematic analysis approach was used, applying the candidacy model of access to deepen interpretation. RESULTS: Two dyad and 33 individual interviews were conducted with 10 people with dementia, 11 current caregivers and 16 bereaved caregivers (men = 11, 70-89 years = 18, white ethnicity = 32). Three themes are reported: (1) Navigating a 'push system', (2) ED as the 'last resort', and (3) Taking dementia 'seriously'. Themes describe a discrepancy between the configuration of services and the needs of people affected by dementia, who resort to the ED in the absence of accessible alternatives. Underlying this discrepancy is a lack of systemic prioritisation of dementia and wider societal stigma. CONCLUSION: Although a last resort, ED attendance is frequently the path of least resistance for people with dementia who encounter multiple barriers for timely, responsive access to community health and social care. Greater systemic prioritisation of dementia as a life-limiting condition may help to reduce reliance on the ED through essential development of post-diagnostic care, from diagnosis to the end of life.

A population-based retrospective cohort study of end-of-life emergency department visits by people with dementia: multilevel modelling of individual- and service-level factors using linked data.

BACKGROUND: emergency department (ED) visits have inherent risks for people with dementia yet increase towards the end-of-life. Although some individual-level determinants of ED visits have been identified, little is known about service-level determinants. OBJECTIVE: to examine individual- and service-level factors associated with ED visits by people with dementia in the last year of life. METHODS: retrospective cohort study using hospital administrative and mortality data at the individual-level, linked to health and social care service data at the area-level across England. The primary outcome was number of ED visits in the last year of life. Subjects were decedents with dementia recorded on the death certificate, with at least one hospital contact in the last 3 years of life. RESULTS: of 74,486 decedents (60.5% women; mean age 87.1 years (standard deviation: 7.1)), 82.6% had at least one ED visit in their last year of life. Factors associated with more ED visits included: South Asian ethnicity (incidence rate ratio (IRR) 1.07, 95% confidence interval (CI) 1.02-1.13), chronic respiratory disease as the underlying cause of death (IRR 1.17, 95% CI 1.14-1.20) and urban residence (IRR 1.06, 95% CI 1.04-1.08). Higher socioeconomic position (IRR 0.92, 95% CI 0.90-0.94) and areas with higher numbers of nursing home beds (IRR 0.85, 95% CI 0.78-0.93)-but not residential home beds-were associated with fewer ED visits at the end-of-life. CONCLUSIONS: the value of nursing home care in supporting people dying with dementia to stay in their preferred place of care must be recognised, and investment in nursing home bed capacity prioritised.

Exploring costs, cost components, and associated factors among people with dementia approaching the end of life: A systematic review.

INTRODUCTION: Understanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs are and how they change closer to death, and (3) which factors are associated with these costs. METHODS: We searched the electronic databases CINAHL, Medline, Cochrane, Web of Science, EconLit, and Embase and reference lists of included studies. We included any type of study published between 1999 and 2019, in any language, reporting primary data on costs of health care in individuals with dementia approaching the end of life. Two independent reviewers screened all full-text articles. We used the Evers' Consensus on Health Economic Criteria checklist to appraise the risk of bias of included studies. RESULTS: We identified 2843 articles after removing duplicates; 19 studies fulfilled the inclusion criteria, 16 were from the United States. Only two studies measured informal costs including out-of-pocket expenses and informal caregiving. The monthly total direct cost of care rose toward death, from $1787 to $2999 USD in the last 12 months, to $4570 to $11921 USD in the last month of life. Female sex, Black ethnicity, higher educational background, more comorbidities, and greater cognitive impairment were associated with higher costs. DISCUSSION: Costs of dementia care rise closer to death. Informal costs of care are high but infrequently included in analyses. Research exploring the costs of care for people with dementia by proximity to death, including informal care costs and from outside the United States, is urgently needed.

Factors Associated With Emergency Department Visits by People With Dementia Near the End of Life: A Systematic Review.

OBJECTIVES: Emergency department (ED) attendance is common among people with dementia and increases toward the end of life. The aim was to systematically review factors associated with ED attendance among people with dementia approaching the end of life. DESIGN: Systematic search of 6 databases (MEDLINE, EMBASE, ASSIA, CINAHL, PsycINFO, and Web of Science) and gray literature. Quantitative studies of any design were eligible. Newcastle-Ottawa Scales and Cochrane risk-of-bias tools assessed study quality. Extracted data were reported narratively, using a theoretical model. Factors were synthesized based on strength of evidence using vote counting (PROSPERO registration: CRD42020193271). SETTING AND PARTICIPANTS: Adults with dementia of any subtype and severity, in the last year of life, or in receipt of services indicative of nearness to end of life. MEASUREMENTS: The primary outcome was ED attendance, defined as attending a medical facility that provides 24-hour access to emergency care, with full resuscitation resources. RESULTS: After de-duplication, 18,204 titles and abstracts were screened, 367 were selected for full-text review and 23 studies were included. There was high-strength evidence that ethnic minority groups, increasing number of comorbidities, neuropsychiatric symptoms, previous hospital transfers, and rural living were positively associated with ED attendance, whereas higher socioeconomic position, being unmarried, and living in a care home were negatively associated with ED attendance. There was moderate-strength evidence that being a woman and receiving palliative care were negatively associated with ED attendance. There was only low-strength evidence for factors associated with repeat ED attendance. CONCLUSIONS AND IMPLICATIONS: The review highlights characteristics that could help identify patients at risk of ED attendance near the end of life and potential service-related factors to reduce risks. Better understanding of the mechanisms by which residential facilities and palliative care are associated with reduced ED attendance is needed.

Quality indicators for dementia and older people nearing the end of life: A systematic review.

BACKGROUND: Robust quality indicators (QIs) are essential for monitoring and improving the quality of care and learning from good practice. We aimed to identify and assess QIs for the care of older people and people with dementia who are nearing the end of life and recommend QIs for use with routinely collected electronic data across care settings. METHODS: A systematic review was conducted, including five databases and reference chaining. Studies describing the development of QIs for care of older people and those with dementia nearing the end of life were included. QIs were categorized as relating to processes or outcomes, and mapped against six care domains. The psychometric properties (acceptability, evidence base, definition, feasibility, reliability, and validity) of each QI were assessed; QIs were categorized as robust, moderate, or poor. RESULTS: From 12,980 titles and abstracts screened, 37 papers and 976 QIs were included. Process and outcome QIs accounted for 780 (79.7%) and 196 (20.3%) of all QIs, respectively. Many of the QIs concerned physical aspects of care (n = 492, 50.4%), and very few concerned spiritual and cultural aspects of care (n = 19, 1.9%). Three hundred and fifteen (32.3%) QIs were robust and of those 220 were measurable using routinely collected electronic data. The final shortlist of 71 QIs came from seven studies. CONCLUSIONS: Of the numerous QIs developed for care of older adults and those with dementia nearing the end of life, most had poor or moderate psychometric properties or were not designed for use with routinely collected electronic datasets. Infrastructure for data availability, combined with use of robust QIs, is important for enhancing understanding of care provided to this population, identifying unmet needs, and improving service provision.