DECIDE (Diverse experiences of End-of-Life Care for Dementia) establishing consensus and capacity for future research through collaboration and co-production.

BACKGROUND: Dementia is a leading cause of death globally. However, end-of-life care is often poor or non-existent. People with dementia from ethnic minorities or socioeconomically deprived communities are even less likely to receive good palliative care. Despite this, research into end-of-life care often fails to include people from these populations. AIM: To find out what research is required to improve end-of-life care for everyone with dementia and how to facilitate inclusivity. METHOD: A scoping review of the academic literature (Medline, CINAHL, EMBASE, PsycInfo and Scopus databases) published between Jan 2000 and April 2023 was conducted. Findings were shared with diverse key stakeholders through a series of workshops. Conclusions were subsequently used to provide evidence-based recommendations for inclusive end-of-life care and future research. RESULTS: Themes from the literature were evident in the personal and professional experiences of key stakeholders. Palliative care providers are often ignorant of the needs of those dying in the margins. Support services are scarce and unequal geographically. There is a lack of personalised and culturally appropriate care for those with dementia and their families. Themes from the stakeholder groups included a need for better communication between services, and more investment into dementia as a palliative condition, with avenues created to increase trust and facilitate engagement with services. CONCLUSION: Future research should focus on educational strategies, including how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions, with appropriate models of inclusive, appropriately funded care needed.

Social Insurance for Long-term Care.

The issue of how best to finance long-term care (LTC) is the subject of recent reforms, forthcoming reforms or continuing debate in various countries and remains as relevant and challenging as ever. LTC services are crucial to the wellbeing of large numbers of older adults who need help with everyday tasks. Demand for LTC for older adults is projected to rise across developed and developing countries as the number of older adults rises. Supply of care services is likely to remain constrained due to shortages of long-term care workforce and financial constraints in many countries, and the financial risks associated with LTC remain. Financing of LTC is a complicated issue which raises considerations of economic efficiency and incentives, equity including intergenerational equity, the balance of risk between public and private funding, and sustainability of public expenditures. The aim of this paper is to discuss analytically the case for social insurance as an equitable and efficient way to finance LTC. The paper considers social insurance systems, especially in Germany and Japan, in comparison with safety net tax funded systems such as in England and the USA and more generous tax funded systems such as in Sweden and Denmark. Social insurance has advantages and disadvantages compared with these other systems. It tends to be associated with greater clarity and acceptability since it involves collection of revenues ear marked for LTC and, at least in principle, a link between contributions and benefits on the basis of clear eligibility criteria.

Effective interventions for potentially modifiable risk factors for late-onset dementia: a costs and cost-effectiveness modelling study.

BACKGROUND: The potential economic value of interventions to prevent late-onset dementia is unknown. We modelled this for potentially modifiable risk factors for dementia. METHODS: For this modelling study, we searched PubMed and Web of Science from inception to March 12, 2020, and included interventions that: successfully targeted any of nine prespecified potentially modifiable risk factors (hypertension, diabetes, hearing loss, obesity, physical inactivity, social isolation, depression, cigarette smoking, and less childhood education); had robust evidence that the intervention improved risk or risk behaviour; and are feasible to enact in an adult population. We established when in the life course each intervention would be delivered. We calculated dementia incidence reduction from annual incidence of dementia in people with each risk factor, and population attributable fraction for each risk, corrected for risk factor clustering, and how effectively the intervention controls the risk factor. We calculated the discounted value of lifetime health gain and effect on cost (including NHS, social care and carer costs) per person eligible for treatment. We estimated annual total expenditure on the fully operational intervention programme in England. FINDINGS: We found effective interventions for hypertension, smoking cessation, diabetes prevention, and hearing loss. Treatments for stopping smoking and provision of hearing aids reduced cost. Treatment of hypertension was cost-effective by reference to standard UK thresholds. The three interventions when fully implemented would save £1·863 billion annually in England, reduce dementia prevalence by 8·5%, and produce quality-adjusted life-year gains. The intervention for diabetes was unlikely to be cost-effective in terms of effect on dementia alone. INTERPRETATION: There is a strong case for implementing the three effective interventions on grounds of cost-effectiveness and quality-of-life gains, as well as for improvements in general health. The interventions have the potential to remain cost-saving or cost-effective even with variations in dementia incidence and costs and effectiveness of interventions. FUNDING: Economic and Social Research Council.

Economic impacts of introducing diagnostics for mild cognitive impairment Alzheimer's disease patients.

INTRODUCTION: Disease-modifying treatments for Alzheimer's disease (AD) are likely to be offered only to patients with molecular evidence for Alzheimer pathology and expanded to patients with prodromal AD. We calculated the potential future costs of expanding the number of positron emission tomography (PET) and cerebrospinal fluid (CSF) tests in the United Kingdom. METHODS: We conducted a focused literature review and consulted experts to obtain information on the current use of PET and CSF to diagnose prodromal AD, staffing and equipment requirements for these tests, and associated costs. RESULTS: We estimate annual costs of 100,000 extra amyloid PET scans and 100,000 extra CSF tests at £113 million and £48 million, respectively; these costs are likely to be higher in the first year. DISCUSSION: The budgetary impacts are not insignificant but are small in comparison to the likely market price of any disease-modifying treatments or to the probable costs of missed or inaccurate diagnosis.

Systematic literature review of methodologies and data sources of existing economic models across the full spectrum of Alzheimer's disease and dementia from apparently healthy through disease progression to end of life care: a systematic review protocol.

INTRODUCTION: Dementia is one of the greatest health challenges the world will face in the coming decades, as it is one of the principal causes of disability and dependency among older people. Economic modelling is used widely across many health conditions to inform decisions on health and social care policy and practice. The aim of this literature review is to systematically identify, review and critically evaluate existing health economics models in dementia. We included the full spectrum of dementia, including Alzheimer's disease (AD), from preclinical stages through to severe dementia and end of life. This review forms part of the Real world Outcomes across the Alzheimer's Disease spectrum for better care: multimodal data Access Platform (ROADMAP) project. METHODS AND ANALYSIS: Electronic searches were conducted in Medical Literature Analysis and Retrieval System Online, Excerpta Medica dataBASE, Economic Literature Database, NHS Economic Evaluation Database, Cochrane Central Register of Controlled Trials, Cost-Effectiveness Analysis Registry, Research Papers in Economics, Database of Abstracts of Reviews of Effectiveness, Science Citation Index, Turning Research Into Practice and Open Grey for studies published between January 2000 and the end of June 2017. Two reviewers will independently assess each study against predefined eligibility criteria. A third reviewer will resolve any disagreement. Data will be extracted using a predefined data extraction form following best practice. Study quality will be assessed using the Phillips checklist for decision analytic modelling. A narrative synthesis will be used. ETHICS AND DISSEMINATION: The results will be made available in a scientific peer-reviewed journal paper, will be presented at relevant conferences and will also be made available through the ROADMAP project. PROSPERO REGISTRATION NUMBER: CRD42017073874.

The Effectiveness of Advance Care Planning in Improving End-of-Life Outcomes for People With Dementia and Their Carers: A Systematic Review and Critical Discussion.

CONTEXT: End-of-life care for people with dementia can be poor, involving emergency hospital admissions, burdensome treatments of uncertain value, and undertreatment of pain and other symptoms. Advance care planning (ACP) is identified, in England and elsewhere, as a means of improving end-of-life outcomes for people with dementia and their carers. OBJECTIVE: To systematically and critically review empirical evidence concerning the effectiveness of ACP in improving end-of-life outcomes for people with dementia and their carers. METHODS: Systematic searches of academic databases (CINAHL Plus with full text, PsycINFO, SocINDEX with full text, and PubMed) were conducted to identify research studies, published between January 2000-January 2017 and involving statistical methods, in which ACP is an intervention or independent variable, and in which end-of-life outcomes for people with dementia and/or their carers are reported. RESULTS: A total of 18 relevant studies were identified. Most found ACP to be associated with some improved end-of-life outcomes. Studies were predominantly, but not exclusively, from the U.S. and care home-based. Type of ACP and outcome measures varied. Quality was assessed using National Institute of Health and Care Excellence quality appraisal checklists. Over half of the studies were of moderate to high quality. Three were randomized controlled trials, two of which were low quality. CONCLUSION: There is a need for more high-quality outcome studies, particularly using randomized designs to control for confounding. These need to be underpinned by sufficient development work and process evaluation to clarify the appropriateness of outcome measures, explore implementation issues and identify "active elements."

Development and validation of the Greek severe impairment battery (SIB).

BACKGROUND: Most neuropsychological batteries, especially those most often used, are unsuitable for the assessment of patients with severe dementia. The Severe Impairment Battery (SIB) was developed for the evaluation of preserved cognitive functions in these patients. The aim of this study was to formulate a Greek version of the SIB and to conduct a first assessment of its use of patients with mild, moderate, or severe Alzheimer's disease (AD), compared to the Mini-Mental State Examination (MMSE). METHODS: A convenience sample of 42 dementia patients according to DSM-IV-TR criteria and 23 healthy participants was selected. Patients were assessed twice using a Greek translation of the SIB and the Greek version of MMSE. Patients were divided into three severity groups based on grouped by Clinical Dementia Rating (CDR) score and the SIB and MMSE scores were compared. RESULTS: The validity of the SIB was confirmed by evaluating the correlation coefficients between the SIB and Greek-MMSE, grouped by CDR, which were found to be significant. Cronbach's α for the total SIB score and each subscale score showed high significance, and the item-total correlation for each subscale was also acceptable. The test-retest correlation for the total SIB score and subscale scores were significant. The total SIB score and subscale scores were examined according to CDR. CONCLUSION: The Greek SIB is reliable and valid in differentiating patients with moderate or severe dementia, whereas MMSE loses sensitivity due to a floor and ceiling effect.