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.

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.

Innovative methods for involving people with dementia and carers in the policymaking process.

BACKGROUND: There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. METHOD: A Policy Café was co-produced with people with dementia using a World Café methodology. A Carer's Assembly was co-produced with caregivers of people with dementia using a citizen's assembly model. RESULTS: Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty-eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy-makers to inform their decision making. DISCUSSION: Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co-production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy-makers. Policy-makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. PATIENT OR PUBLIC CONTRIBUTION: People with dementia and carers were involved in study design, data analysis and presentation.

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.

Geographic availability and accessibility of day care services for people with dementia in Ireland.

BACKGROUND: Day care is an important service for many people with dementia and their carers. In Ireland, day care services for people with dementia are delivered by a mix of dementia-specific day care centres as well as generic day care centres that cater for people with dementia to various degrees. In this paper we examine the geographic distribution of day care services for people with dementia relative to potential need. METHODS: Using a national survey of day care centres, we estimate the current availability of day care services for people with dementia in the country. We use geographic information systems (GIS) to map day care provision at regional and sub-regional levels and compare this to the estimated number of people with dementia in local areas. RESULTS: There is significant variation across the country in the existing capacity of day care centres to cater for people with dementia. The number of places per 100 persons with dementia in the community varies from 14.2 to 21.3 across Community Health Organisation areas. We also show that 18% of people with dementia do not live within 15kms of their nearest day care centre. CONCLUSION: Currently, day care centres, in many parts of the country, have limited capacity to provide a service for people with dementia who live in their catchment area. As the number of people with dementia increases, investment in day care centres should be targeted to areas where need is greatest. Our GIS approach provides valuable evidence that can help inform decisions on future resource allocation and service provision in relation to day care.

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.

The impact on social relationships of moving from congregated settings to personalized accommodation.

A natural experiment contrasted the social relationships of people with intellectual disabilities ( n = 110) before and after they moved from congregated settings to either personalized accommodation or group homes. Contrasts could also be drawn with individuals who had enduring mental health problems ( n = 46) and who experienced similar moves. Face-to-face interviews were conducted in each person's residence on two occasions approximately 24 months apart. Multivariate statistical analyses were used to determine significant effects. Greater proportions of people living in personalized settings scored higher on the five chosen indicators of social relationships than did persons living in grouped accommodation. However, multivariate statistical analyses identified that only one in five persons increased their social relationships as a result of changes in their accommodation, particularly persons with an intellectual disability and high support needs. These findings reinforce the extent of social isolation experienced by people with disabilities and mental health problems that changes in their accommodation only partially counter.

Intensive home care packages for people with dementia: a realist evaluation protocol.

BACKGROUND: Dementia presents a significant challenge to health systems and to the person and family affected. Home care is increasingly seen as a key service in addressing this challenge in a person-centred and cost-effective way. Intensive Home Care Packages (IHCPs) were introduced in Ireland to provide personalised and high levels of support for people with dementia to remain at home or be discharged home from hospital, and to build on the work of the HSE & Genio Dementia Programme. This realist evaluation is concerned with real world questions of feasibility and effectiveness; specifically understanding in what ways IHCPs work, how optimum outcomes are achieved, for whom and in what contexts do IHCPs work best. METHODS: A mixed-method, multi-stakeholder study was designed within a realist evaluation conceptual framework. The process evaluation includes semi-structured interviews with health service staff at all levels, social network analysis and secondary database analysis; the outcomes evaluation includes quantitative measures and qualitative data collected through in-depth interviews with people with dementia and family carers; and the cost evaluation includes analysis of data from the Resource Utilisation in Dementia (RUD). The four stage cycle of realist evaluation is adopted, with iterative rounds of theory formulation, data collection and theory testing throughout. DISCUSSION: This realist evaluation of a complex intervention involves a variety of data and perspectives in order to provide confidence in moving from hypothetical constructs about how IHCPs might work to explanations of potential or observable causal mechanisms. In spite of being a key form of service delivery in most healthcare systems, the ways in which home care works to produce the desired outcomes seems to be poorly understood. While there is much descriptive and comparative work, there is a lack of understanding regarding which patient groups might benefit most from home care, or the influence of different service or cultural contexts on outcomes from home care. As well as addressing the core research objectives, this study aims to make a contribution to the underlying theory of home care in ways that can progress our understanding of how outcomes are produced for home care recipients.

Irish persons with intellectual disability moving from family care to residential accommodation in a period of austerity.

BACKGROUND: Ireland has a growing population of adult persons living with family carers, thereby increasing the demand for residential places. Simultaneously, government policy aimed to reprovision residents living in congregated settings but at a time when funding was curtailed due to the economic crisis. This study examines the movements of people into and among three types of residential options between 2009 and 2014. METHOD: A cohort of 20,163 persons recorded on the National Intellectual Disability Database in 2009 was identified and tracked to the 2014 database. RESULTS: An estimated 200 persons per annum (@1.6% of those living with families) moved from family care although the number of places available nationally fell by 9%. Moreover, transfers of existing residents into vacated places tended to exceed those from families. CONCLUSIONS: More people will have to continue living with their families and for longer if funding for new places remains curtailed.

Changes in the self-rated well-being of people who move from congregated settings to personalized arrangements and group home placements.

A natural experiment contrasted the self-rated well-being of people with intellectual disabilities ( n = 75) and those with enduring mental health problems ( n = 44) after they moved to new accommodation and support options, while others remained in congregated settings or living in the family home. Most support staff also provided well-being ratings. In personalized arrangements, personal well-being was significantly higher than in congregated settings; particularly for people with intellectual disability who had higher support needs compared to people with mental health problems. Moving to a group home also brought some improvement in the well-being ratings of people with intellectual disability but only for those with higher support needs. Such moves seemed to lead to a decline in well-being for those with mental health problems. There were marked discrepancies between ratings given by the person with those of staff. The well-being measure shows promise for use in further comparative and longitudinal studies.

The role of support staff as people move from congregated settings to group homes and personalized arrangements in Ireland.

The movement of people with intellectual disabilities into the community is increasingly endorsed by public policy. Whilst staff are critical to a successful transition to the community, there is only scattered research on their role in supporting people to move. In this study, 32 staff and the 16 people with intellectual disabilities they supported to move from congregated settings to group homes or personalized living arrangements in the community were interviewed on two occasions, before (time 1) and after (time 2) the move. In congregated settings, staff steered the move to community living, they helped them to settle in community group homes and supported them to increase control over their lives in personalized community arrangements, where they support became increasingly more personalized and geared towards community participation and development of social relationships. Implications for staff training are drawn.

Relocating people with intellectual disability to new accommodation and support settings: Contrasts between personalized arrangements and group home placements.

Internationally the relocation of people with intellectual disability from institutions has brought significant gains to their quality of life. This study contrasted three groups of persons in Ireland who moved either to personalized arrangements (n = 29) or to community group homes (n = 31) with those who remained in congregated settings awaiting relocation (n = 29). Persons moving to rented accommodation with personalized support tended to be younger and had fewer support needs than those in group homes. They had greater control and choice in their lives, more community engagement and increased personal relationships compared to residents in group homes but those remaining in congregated settings fared worse of all. However, average staff costs were significantly higher in the latter settings. The implications for the future provision of group living arrangements are discussed along with the need for further longitudinal research to assess the sustained impact of personalized arrangements and their funding.

Dementia research in Ireland: What should we prioritise?

Background: Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers. Methods: (1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research. Results: Eight of the top ten research priorities in the survey of professionals ( n=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops ( n=13) ranked 'better drugs and treatment for people with dementia', 'dementia prevention/ risk reduction' and 'care for people with dementia and carers' as their top priority areas. Conclusions: Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.

Staff and family views of alternative respite services for adults with intellectual disabilities - aims, outcomes and experiences.

Background Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities. Specific aim: The present study sought to explore the views of service managers and families on the definitions, aims, outcomes and general experiences of these programmes among a sample of adults with intellectual disabilities (ID) using a range of alternative respite services. Method Participants were managers of respite services for people with ID (n = 6) and family members (predominantly parents, n = 32) of adults receiving respite services from these organisations. All participants were provided with appropriate information on the study and gave consent. Semi-structured interviews were used to explore participants' perspectives on alternative respite provision for adults with ID. Data were analysed using thematic analysis, with multiple analysts involved to allow for reflection on the interpretation of data. Findings Managers and families showed diversity in the conceptualisations of respite services, with themes highlighting the importance of the break for both people with ID and families, as well as a clear focus on the needs of and developmental outcomes for the person with ID. As such respite was viewed as both a model of service and an outcome for families and individuals with ID. These differing views appeared to have implications for views on who was the target beneficiary of respite. Discussion The present study reflects alternative respite as a diverse experience for people with ID, their family members and the service providers supporting them. Nevertheless, views were generally positive. Further consideration of the nature of respite services beyond the traditional conceptualisation is warranted.

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.

Giving voice to those directly affected by the COVID-19 pandemic - the experience and reflections of a person with dementia.

The coronavirus disease 2019 (COVID-19) pandemic presents unprecedented challenges to society. Behind the daily tally of deaths and cases of infection are individuals and families who are experiencing the ultimate consequence of this disease. Every aspect of our lives has been affected and these affects are amplified for those who have to cocoon and have conditions such as dementia. There is little opportunity to directly hear the experience of those 'vulnerable adults' who have been self-isolating for many weeks now.  This letter takes the form of a reflective conversation with a person living with dementia. Honouring the principles of public and patient involvement (PPI), it is an attempt to give voice to the experience of one of the many thousands of vulnerable people during the COVID-19 pandemic. As well as describing the effect on her daily life, Helen describes what supports would help at this time.  While the focus of attention at the moment is rightly on dealing with the effects of the virus in nursing homes, the many thousands of people living with dementia in the community should not be forgotten.

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 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.

Public preferences for home care services for people with dementia: A discrete choice experiment on personhood.

Dementia is a progressive and debilitating neurodegenerative condition which significantly impacts on quality of life and the ability to live independently. It is a leading cause of disability in older populations and carries significant economic and social costs. It is no wonder, therefore, that dementia has been identified as a major global health and social care challenge, especially with prevalence projected to triple by 2050. In many countries, the stated policy aim is to care for people with dementia in their own homes for as long as possible and practicable. However, home care systems vary significantly across countries in their approach to personhood in dementia, particularly the extent to which care provision reflects the needs and preferences of recipients. In this paper, we undertook a discrete choice experiment, with data collected from 551 individuals in Ireland between November and December 2018, to elicit public preferences for personhood-oriented home care services for people with moderate dementia. We capture the concept of personhood with two attributes, one that refers to whether care provision is flexible and tailored to the individual needs of the person with dementia, and a second that refers to whether communication with the person with dementia is expressed in a personalised manner. Using mixed logit models, we find that flexible service provision, personalised communication and increased home care hours are highly valued by citizens. While people are indifferent to a means-tested co-payment for home care relative to no co-payment, they are opposed to a universal co-payment. We also estimate the welfare impact of a move from the status quo to alternative personhood-oriented home care arrangements, providing useful insights for policymakers regarding the future design and funding of home care services. The paper has significant implications for the recalibration of health and social care systems towards personhood in dementia care.