Generating national projections of dementia cases for Ireland using a calibrated macro-simulation model.

INTRODUCTION: Epidemiological data on dementia is not available in many European countries and regions due to the high cost and complexity of conducting large scale dementia screening studies. The available epidemiological studies identify potentially substantial variation in the prevalence of dementia over time and across Europe. METHODS: In this paper we generate simulations of the number of dementia cases in Ireland from 1991 to 2036 using a three-state Markov illness-death model. Parameters values are selected for each simulation from a range using a random parameter search pattern. We employ a novel calibration method which exploits the strong relationship between dementia, ageing and mortality. Simulation weights are generated based on differences between observed and modelled cohorts of older people and the reported number of deaths from dementia. Irish Census data from 1991 to 2016 and the number of recorded deaths due to dementia in 2018 are used as calibration points. A weighted average projection of the number of dementia cases is generated. RESULTS: We estimate a weighted average number of cases of dementia in 2016 of 54 877 increasing to 98 946 in 2036; this estimate is substantially lower than the estimates generated using extrapolation methods. We show the wide range of possible outcomes given the range in the available parameter estimates and show that irrespective of whether the incidence rate of dementia is declining the number of cases of dementia is rapidly increasing due to population ageing. CONCLUSION: Previous studies have used parameter estimates from meta-analyses of the literature or from individual studies. In this paper we supplement these with a calibration approach using observed cause of death and population age structure data. These additional sources of data can be used to generate estimates of dementia prevalence in any country or region which has census data and data on deaths due to dementia

Resource allocation across the dementia continuum: a mixed methods study examining decision making on optimal dementia care among health and social care professionals

Background: The understanding of appropriate or optimal care is particularly important for dementia, characterised by multiple, long-term, changing needs and the increasing expectations of people using services. However, the response of health and social care services is limited by resource constraints in most countries. This study sought to determine the optimal level, mix and cost of services for different dementia case types across the dementia continuum, and to better understand the resource allocation decision making process among health and social care professionals (HSCPs). Methods: A balance of care framework was applied to the study questions and developed in three ways; firstly by considering optimality across the course of dementia and not just at the margin with residential care; secondly, through the introduction of a fixed budget to reveal constrained optimisation strategies; and thirdly through the use of a mixed methods design whereby qualitative data was collected at workshops using nominal group technique and analysed to obtain a more detailed understanding of the decision-making process. Twenty four HSCPs from a variety of disciplines participated in the resource allocation decision-making exercise. Results: HSCPs differentiated between case type severity; providing 2.6 times more resources to case types with higher level needs than those with lower level needs. When a resource constraint was introduced there was no evidence of any disproportionate rationing of services on the basis of need, i.e. more severe case types were not favoured over less severe case types. However, the fiscal constraint led to a much greater focus on meeting physical and clinical dependency needs through conventional social care provision. There was less emphasis on day care and psychosocial provision when resources were scarcer following the introduction of a fixed budget constraint. Conclusions: HSCPs completed complex resource allocation exercises for people with dementia, including expected differentiation across case type severity. When rationing was introduced, HSCPs did not discriminate in favour of case types with high levels of need. They did, however, support conventional home care provision over psychosocial care, although participants were still keen to provide some residual cover for the latter, especially for case types that might benefit

Exploratory pilot study on resource allocation along the dementia continuum under constrained and unconstrained budget scenarios

BACKGROUND: People with dementia and their carers have a wide range of health and social care needs which vary along the dementia continuum. The government response to events and transitions at various stages of the continuum can have a substantial impact on the lived experience of dementia and to resource allocation decision-making. Hearing what practitioners have to say about need at various points of transition along the dementia continuum is very important, especially for the resource allocation process. METHODS: The paper uses an innovative longitudinal balance of care (BoC) methodology to identify the impact of changes along the dementia care continuum for care recipients and practitioners throughout the course of the condition. Participatory workshops were held with five Health and Social Care Professionals (HSCPs) to pilot a mixed methods approach to resource allocation decision-making along the dementia continuum. In these workshops, these practitioner participants were asked to generate a set of services and supports for a person with dementia with changing and evolving needs over a five year period under two budget scenarios: no budget constraint (NBC); and a budget constraint (BC). Participants were asked to recommend services for short, post event, transition periods and for longer steady state periods. RESULTS: Participants were able to allocate different packages of services and supports for different stages of dementia under different budgetary conditions. The total cost for the five year period under the NBC scenario is €200,000 on average, reducing to €133,000 under the BC scenario. Under the BC (NBC) scenarios, participants spent on average 85% (90%) of their budget on community services and 15% (10%) on nursing home services. CONCLUSION: The methodology used in this paper is a valuable complement to cross-sectional BoC studies through its identification of the importance of events, transitions and staging along the dementia care continuum. The desire of participants to keep people with dementia living in their own home is strong, even in the later stages of dementia, as evident by their recommendation to spend €400 per week more on home care provision compared to the alternative residential care, albeit in the absence of any budget constraints. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-022-03089-1

Resource allocation in dementia care: comparing the views of people with dementia, carers and health and social care professionals under constrained and unconstrained budget scenarios

Background: People with dementia and their carers have a wide range of health and social care needs. People with dementia, carers and health and social care professionals (HSCPs) all have different perspectives on dementia care. Differences among these groups are important for commissioners of services and for front-line HSCPs. Objective: To compare the service recommendations of people with dementia and carers with those of HSCPs, under different budgetary conditions. Methods: A mixed-methods approach, which builds on the Balance of Care method, was used. Nine workshops were held with 41 participants from three groups: people with dementia, carers and HSCPs. Participants were asked to make decisions on a set of services for case types of dementia under two scenarios: a no budget constraint (NBC) scenario and a budget constraint (BC) scenario. Results: While each group allocated resources in broadly similar overall proportions, important differences in emphasis emerged: (i) people with dementia and carers placed more emphasis on psychosocial supports than HSCPs; (ii) carers put more emphasis on respite opportunities for carers; and (iii) carers identified residential care as the most suitable setting for the person with dementia more frequently than health care professionals. Conclusion: Our findings suggest that the importance of psychosocial interventions, including counselling and peer support programmes, are currently underestimated by HSCPs. The provision of in-home respite is highly valued by carers. Even with unconstrained resources, some carers do not judge home care to be a viable option for dementia case types with high-level care needs

Intensive home care supports, informal care and private provision for people with dementia in Ireland.

BACKGROUND: This study analysed the cost of intensive home care packages for people with dementia living on the boundary of home care and residential care facilities in Ireland. The cost of community-based services and supports, including informal care and private out-of-pocket expenditure, was compared to the cost of public and private residential care. METHODS: The study recruited 42 people with dementia and/or their caregivers, who were living on the boundary of home care and residential care, to an in-depth study on the cost of care. The Resource Utilization in Dementia scale was used to collect data on the utilization of standard formal care and informal care by people with dementia in receipt of an intensive home care package. Information on private out-of-pocket expenditure on care was also collected. Unit costs were assigned and community-based care was compared with public and private residential care alternatives. RESULTS: The average weekly cost of home care, including the intensive home care package, standard formal community care provision, medications, consumption and housing, was estimated at €1127. This is lower than the average weekly cost of public long-stay care facilities (€1526) and around the same as for private nursing home fees in the Dublin region (€1149). When the opportunity cost valuation of informal care is included, the cost of home care is higher than all types of residential care. Adding private care expenditure further inflates the cost of home care. CONCLUSION: Keeping highly dependent people with dementia living at home is not cheap and raises questions about optimal resource allocation on the boundary of home care and residential care. Even with significant public spending on intensive home care packages, family care costs remain high. So too does private out-of-pocket expenditure on care for some people with dementia

Resource allocation decision-making in dementia care with and without budget constraints: a qualitative analysis

Introduction: Health systems in many different countries have increasingly been reorienting the delivery of dementia care to home and community care settings. This paper provides information on how health and social care professionals (HSCPs) in Ireland make decisions on resource allocation for people with dementia living at home and how resource constraints affect their decisions and choices.Methods: A balance of care approach was used to assess resource allocation across six dementia case types, from low to high needs. Workshops were held with 24 HSCPs from multiple disciplines. Participants allocated services in two scenarios: allocation with and without a budget constraint. Nominal group technique was used to structure discussions around resource allocation in both scenarios. Thematic analysis was applied to analyse the qualitative data using a general inductive approach.Results: The following themes influenced allocative deliberations: whose needs are being met; what needs are identified; decision making context; decision making process; and allocation outcomes. Participants were proficient in making decisions, using ‘decision rules’ or heuristics to help them make decisions under fixed budget rules and sticking to conventional provision when constraints were in place.Conclusions: Freedom from a budget constraint allowed HSCPs to consider a broader range of services and to take a more expansive view on what needs should be considered, with a particular emphasis on adopting a proactive, preventative approach to the allocation of resources. The effect of the budget constraint overall was to narrow all considerations, using heuristics to limit the type of needs addressed and the range of services and supports provided. The consequences were a largely reactive, less personalised system of care. The findings emphasise the need for an integrated and comprehensive assessment process that is more concerned with individualised responses rather than relying on existing models of care alone

Risk, reassurance and routine: a qualitative study of narrative understandings of the potential for HIV self-testing among men who have sex with men in England

BACKGROUND: HIV testing has seen a rapid evolution over the last decade with multiple modalities now in use globally. In recent years HIV self-testing (HIVST) has been legalised in the UK paving the way for further expansion of testing. Interventions are delivered in particular social contexts which shape uptake. It is therefore important to understand how novel interventions are likely to be received by their intended users. This study aims to understand how HIVST compliments existing testing strategies considered or adopted by men who have sex with men (MSM). We do this by analysing normative discourses surrounding HIV testing and their perceptions of HIVST's potential future roles. METHODS: Six focus group discussions (FGDs) were conducted with 47 MSM in London, Manchester and Plymouth. One focus group included only MSM who reported higher risk behaviours and one with those who had never tested for HIV. Data were analysed through a thematic framework analysis. RESULTS: Three main narratives for testing for HIV were identified: (i) testing in response to a specific risk event; (ii) as reassurance when there was a small amount of doubt or anxiety related to HIV; and (iii) in response to social norms perpetuated through peers, HIV community groups and the medical establishment to test regularly for HIV. HIVST had limited utility for men when testing in response to specific risk events except in the case of significant structural barriers to other testing opportunities. HIVST was considered to have utility when seeking reassurance, and was thought to be very useful when testing to satisfy the needs and expectations of others around regular testing. There was some ambivalence about the incursion of a clinical intervention into the home. CONCLUSIONS: HIVST following risk events will likely be limited to those for whom existing service provision is insufficient to meet immediate needs based on structural or personal barriers to testing. Obligations of biological citizenship are central to MSM's understanding of the utility of HIVST. In the context of discourses of biocitizenship, men perceive HIVST to have dual roles: firstly as a tool to manage (mild) anxiety around one's HIV status based on an acknowledgment of HIV vulnerability arising from being homosexually active. Secondly, HIVST is useful in complying with social norms and meeting the perceived demands of biomedicine

Psychosocial interventions for community-dwelling people following diagnosis of mild to moderate dementia: findings of a systematic scoping review

National policies and evidence reviews recommend psychosocial interventions (PIs) as an essential support, particularly in the period following dementia diagnosis. However, availability and uptake of these interventions are comparatively low. One of the reasons for this is that clinicians lack information about what might be provided and the potential benefits of different interventions. This article identifies and describes PIs for community-dwelling people following diagnosis of mild to moderate dementia and presents the available evidence to inform practice decisions. A systematic scoping review was employed to map the evidence relating to PIs for this group. This identified 63 relevant studies, testing 69 interventions, which could be grouped into 6 intervention categories: 20 cognition-oriented, 11 behavior-oriented, 11 stimulation-oriented, 13 emotion-oriented, 5 social-oriented, and 9 multimodal. There were three targets for outcome measurement of these PIs: the person with dementia, the family caregiver, and the person–caregiver dyad. Over 154 outcome measures were identified in the studies, with outcomes measured across 11 main domains. The lack of a classification framework for PIs means it is difficult to create a meaningful synthesis of the breadth of relevant evidence to guide clinical practice. Possible dimensions of a classification framework are proposed to begin to address this gap

Bi-allelic Loss-of-Function CACNA1B Mutations in Progressive Epilepsy-Dyskinesia.

The occurrence of non-epileptic hyperkinetic movements in the context of developmental epileptic encephalopathies is an increasingly recognized phenomenon. Identification of causative mutations provides an important insight into common pathogenic mechanisms that cause both seizures and abnormal motor control. We report bi-allelic loss-of-function CACNA1B variants in six children from three unrelated families whose affected members present with a complex and progressive neurological syndrome. All affected individuals presented with epileptic encephalopathy, severe neurodevelopmental delay (often with regression), and a hyperkinetic movement disorder. Additional neurological features included postnatal microcephaly and hypotonia. Five children died in childhood or adolescence (mean age of death: 9 years), mainly as a result of secondary respiratory complications. CACNA1B encodes the pore-forming subunit of the pre-synaptic neuronal voltage-gated calcium channel Cav2.2/N-type, crucial for SNARE-mediated neurotransmission, particularly in the early postnatal period. Bi-allelic loss-of-function variants in CACNA1B are predicted to cause disruption of Ca2+ influx, leading to impaired synaptic neurotransmission. The resultant effect on neuronal function is likely to be important in the development of involuntary movements and epilepsy. Overall, our findings provide further evidence for the key role of Cav2.2 in normal human neurodevelopment.MAK is funded by an NIHR Research Professorship and receives funding from the Wellcome Trust, Great Ormond Street Children's Hospital Charity, and Rosetrees Trust. E.M. received funding from the Rosetrees Trust (CD-A53) and Great Ormond Street Hospital Children's Charity. K.G. received funding from Temple Street Foundation. A.M. is funded by Great Ormond Street Hospital, the National Institute for Health Research (NIHR), and Biomedical Research Centre. F.L.R. and D.G. are funded by Cambridge Biomedical Research Centre. K.C. and A.S.J. are funded by NIHR Bioresource for Rare Diseases. The DDD Study presents independent research commissioned by the Health Innovation Challenge Fund (grant number HICF-1009-003), a parallel funding partnership between the Wellcome Trust and the Department of Health, and the Wellcome Trust Sanger Institute (grant number WT098051). We acknowledge support from the UK Department of Health via the NIHR comprehensive Biomedical Research Centre award to Guy's and St. Thomas' National Health Service (NHS) Foundation Trust in partnership with King's College London. This research was also supported by the NIHR Great Ormond Street Hospital Biomedical Research Centre. J.H.C. is in receipt of an NIHR Senior Investigator Award. The research team acknowledges the support of the NIHR through the Comprehensive Clinical Research Network. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, Department of Health, or Wellcome Trust. E.R.M. acknowledges support from NIHR Cambridge Biomedical Research Centre, an NIHR Senior Investigator Award, and the University of Cambridge has received salary support in respect of E.R.M. from the NHS in the East of England through the Clinical Academic Reserve. I.E.S. is supported by the National Health and Medical Research Council of Australia (Program Grant and Practitioner Fellowship)