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

Introduction

For many years, health systems have been seeking to reorient the delivery of health and social care to home and community settings as much as possible, in an effort to improve outcomes, manage costs and achieve greater equity (OECD, 2017; WHO, 2000). This is also the case in Ireland (Oireachtas Committee on the Future of Healthcare, 2017)). The delivery of home and community based services is particularly important for people with dementia who, in common with many older people, have expressed a preference to remain living well at home for as long as possible (Browne, 2016; McGee et al., 2005). The care needs of people with dementia at the boundary between community and residential care have been widely studied using balance of care methodology (Tucker et al., 2013). Less is known about decision making around care needs throughout the course of dementia, from early stages to more advanced dementia. In addition, there is little evidence on resource allocation decisions under budget constrained conditions in the context of home and community care for people with dementia.

Decision making in health care occurs at many different levels, from budget allocations for health and social care systems to care planning at the individual level. These levels have been labelled respectively as the macro-level and micro-level, with the organizational level in between labelled the meso-level (Plochg & Klazinga, 2002). There is a significant amount of literature on macro-level decision making in health care, such as processes for allocating national or regional health budgets (OECD 2017; Ruane, 2010). The area of clinical decision making also has its own substantial literature, usually examining discipline-specific decision making in acute health care contexts (Standing, 2010; Thokala et al., 2016). In practice, most health and social care professionals (HSCPs) have a limited role in explicit resource allocation, typically working within budgets that have been allocated in a ‘top-down’ way from national to a local level. This may explain the absence of literature examining the role of HSCPs in resource allocation. However, almost all clinical decision making has resource implications and can be construed as resource allocation on a micro-level. It is this clinical and allocation decision making at the micro-level, that aggregates eventually to resource allocation at the macro level.

However, there is very little examination of micro-level decision making in community-based health and social care settings or at the meso-level, lying- between the micro level – how many home care hours should be provided to this person?; and the macro – what proportion of the national health budget should be allocated to home care? There is also little understanding of how this occurs for people with complex conditions such as dementia, who require a wide range of services and supports over a protracted period of time, and who are largely supported at home by family carers (O’Shea & Monaghan, 2017). In common with most other jurisdictions, micro- and meso-level decision making in health care in Ireland occurs in conditions of significant resource constraints (Brick et al., 2010), but there is little empirical evidence on how budget constraints shape decision making or how these decisions impact on dementia care.

This study takes a ‘bottom-up’ approach to understanding resource allocation decision making in dementia care among HSCPs. We examine micro and meso-level decision making at the intersection of clinical decision-making and resource allocation decision making. This is done in two scenarios – decision-making under a fixed budget constraint and decision-making under no budget constraint. Decisions by HSCPs have significant implications for the quality of life of the person with dementia and their family carer, such as what activities the person can engage in, how long they can remain at home, and how well the carer is supported. These decisions have both efficiency and equity implications. Efficiency is concerned with linking costs and outcomes to produce maximum benefits to care recipients - how many hours? what type of hours? to what end? Equity is more concerned with ensuring that resources are allocated fairly, to those with the greatest level of need, irrespective of income, class or geography.

Resource allocation from the macro to the micro level is dependent on an assessment of need, which is itself a complex and often contested concept (Asadi-Lari et al., 2003; Dean, 2010). Maslow’s hierarchy of needs has been very influential, with its enduring concept of inter-related needs where one need is dependent on the fulfilment of a previous need (Maslow, 1943). Bradshaw’s (1972) taxonomy defines four types of need; normative need - as defined by experts, often using standardised assessments; comparative needs – comparing the needs of different individuals or groups based on objective metrics; expressed need – what people demand but often measured in terms of what services people use or waiting lists (both imperfect measures); and felt need – an individual’s expression of their needs. Although very influential, this conceptualisation has raised much argument regarding who is best placed to define need: service users or professionals (Dean, 2010). In this study, we focused on health and social care needs. The overall study included HSCPs, people with dementia and carers and therefore included normative and felt needs. This paper reports on decision making by HSCPs.

A mixed methods study was designed to address some of these identified gaps in the literature. The main objectives of the study were: to gain a greater understanding of the resource allocation decision making process among HSCPs; and to identify differences in decisions relating to dementia care in two scenarios – with a fixed budget constraint and with no budget constraint; with the aim of informing resource allocation for dementia services in Ireland. We collected quantitative data on resource allocation by HSCPs supplemented by qualitative data to elucidate the decision-making process. The focus in this paper is on the latter – understanding how HSCPs make resource allocation decisions. Other papers are in preparation to report on the quantitative findings and to report on a detailed comparison of the quantitative and qualitative data across three groups in the study: HSCPs, people with dementia and carers.

Methods

The qualitative data presented here was collected from HSCPs participating within a broader mixed methods study. The materials and methods for the overall study are described here, as they were used in the production of the qualitative data.

Research design

The study used an explanatory sequential design with qualitative phases following on from quantitative phases as shown in Figure 1 (Fetters & Freshwater, 2015).

Figure 1. Research design.

Nominal group technique (NGT) was used to structure the quantitative exercises and qualitative discussion in five workshops, each with a multidisciplinary mix of HSCPs. The NGT method is used for exploring healthcare priorities and facilitates equal participation (McMillan et al., 2014). It typically consists of four phases: silent generation, round robin, clarification and ranking (McMillan et al., 2014). The materials used were vignettes to illustrate six case types and a service list.

Qualitative data analysis

All recordings were transcribed and uploaded to NVivo version 12. Thematic analysis can be a particularly useful approach for research applied to practice and policy (Braun & Clarke, 2006). We applied the six-phase method of thematic analysis (Braun & Clarke, 2006) to analyse the data using a general inductive approach (Thomas, 2006). The design of the study resulted in qualitative data that was quite structured and the general inductive approach allowed us to identify the core meanings relevant to the research objectives.

The coding process followed that outlined by Thomas (2006). Transcripts were read several times to become familiar with the data and to begin the preliminary identification of themes and categories. Three members of the team (FK, TP and CF) all coded the transcript from one workshop and compared coding to ensure consistency and to develop the coding frame for the other transcripts. All transcripts were coded in full by one of the research team (TP). Coding categories were considered in an iterative series of discussions and initial themes were identified. This resulted in a more manageable number of categories grouped into five main themes. A thematic framework (Figure 2) was developed to summarise the themes and main categories and to show how these related to each other.

Figure 2. Thematic framework.

In order to explore the effect of the resource constraint on decision making in allocating resources, further examination of relationships within data across the themes was conducted to identify decision rules or heuristics that were used by the HSCPs when faced with the budget constraint. Heuristics are simple strategies or mental processes and rules that people use to form judgments quickly, make decisions, and find solutions to complex problems. This happens when an individual focuses on the most relevant aspects of a problem or situation to formulate a solution (Gigerenzer & Gassmeier, 2011; Marewski & Gigerenzer, 2012).

The consolidated criteria for reporting qualitative research (COREQ) (Tong et al., 2007) were used to report and write up our analysis.

Findings

Five main themes were identified from the analysis of the qualitative data:

The framework in Figure 2 shows the relationships between themes and how some are ‘nested’ within others. When decisions were being made, the consideration of whose needs and what needs was ‘nested’ within a consideration of context, which included three types of context: personal, cultural and practice. Information from all three themes was brought to bear in theme 4, the decision making process. This theme is examined in detail in the analysis presented in Table 3–Table 5. The decision making process then results in allocation outcomes (theme 5) which includes not just services, but the identification of key roles and functions.

Theme 1: Whose needs are being met?

A recurring theme in the discussions throughout the workshops related to whose needs were being considered in terms of service allocation. The discussions revealed a lack of clarity as to whose needs were being met and whose needs were a priority: whether the person, the carer or the dyad. HSCPs were clear on supporting the person with dementia to live well at home. Their wish to support the carer was also strongly expressed along with the rationale for doing this:

When the budget constraint was introduced and allocations were pared back to meet the constraint, many HSCPs focused upon the person’s personal care needs, sometimes as a way of alleviating carer burden:

HSCPs found it difficult to disentangle the dyadic nature of benefits, focusing more on joint benefits rather than trade-offs between the parties. Participants noted that even a pared-back provision focusing on personal care for the person would be of some benefit to the carer in relieving some tasks:

Theme 2: What needs are identified?

The case vignettes described a number of needs (e.g. person needs help dressing) that were discussed by participants, leading to a more detailed articulation of needs for both the person with dementia and the carer.

Theme 3: Decision making context

It was clear from the data that decisions about needs and how best to meet them were intertwined with a consideration of multiple contexts. Three contexts were evident and were coded as sub-themes: (a) personal/family context; (b) cultural/values context; and (c) the practice/ system context.

Theme 4: Decision-making process

The framework in Figure 2 illustrates how information on whose needs are being considered, what needs are evident and the personal, cultural and system contexts are all weighed up in the decision-making process. However, this is simply an organising framework to illustrate the decision-making process, as the discussions did not occur in the organised, linear manner portrayed in the diagram. The design of the workshops specifically prompted participants to consider why they reduced the services they did in the BC scenario and what priorities they were trying to address:

Table 3–Table 5 present a more detailed analysis of the decision-making process, taking into account the service response that was typically arrived at following consideration of all the information.

Theme 5: Allocation outcomes

The outcome of the decision making process was largely quantitative; the service types and the amount of each which was allocated to each case type, captured using spreadsheets. These data will be reported separately. However, analysis of the discussions revealed that HSCPs did not just think about the service types and roles described in Table 2 when trying to meet needs. They also described functions associated with service provision. In practice, allocating services/resources to respond to need is not as straightforward as selecting from services on a service list. Three ‘allocation outcomes’ were identified in the qualitative data:

Analysis of decision making when budget constraints are introduced

In order to explore the effect of the resource constraint on decision-making, further examination of the data across the themes was conducted. This was to identify patterns in the decision making of the HSCPs when faced with the budget constraint. Table 3 combines the findings from theme 1 with theme 5 under the two conditions. Thus, for theme 1 whose needs, in the unconstrained scenario the needs of the person with dementia, the carer and the dyad/family are considered separately and together and the resultant response has elements that respond to the needs of each party. However, when the budget constraint is introduced, the focus is on the care needs of the person with dementia and on addressing burden for the carer. Thus, services for the carer are provided with the primary aim of supporting them to continue in their caring role, not to address other needs they might have. The heuristic identified from this analysis stated that; with constrained resources, supports for the person with dementia are prioritised. Supports for the carer are focused on maintaining their ability to continue caring for the person with dementia (Heuristic 1 (H1)).

Table 3. Synthesis of themes 1 and 5 in both conditions to identify heuristics.

Theme 1: Whose Needs?
No constraint	Allocation outcomes	Budget constraint	Allocation outcomes
Needs for all are considered: •   Needs specific to the person with dementia •   Needs specific to the carer •   Needs of the dyad/family	Designed with the separate needs of both in mind as well as supporting the dyad and wider family	•   Personal care needs of the person with dementia prioritised •   Carer’s needs that will help them to continue caring are prioritised •   Carer-specific needs not prioritised	◦   Services prioritised which will meet the direct needs of the person with dementia as well as providing indirect support to the carer ◦   Minimal response to the carer-specific needs
		Heuristic 1: with constrained resources, supports for the person with dementia are prioritised. Supports for the carer are focused on maintaining their ability to continue caring for the person with dementia.

In Table 4, the data from theme 2 what needs are combined with theme 5 allocation outcomes under the two conditions. In the NBC scenario, participants welcomed the opportunity to meet the wider needs of the person and the carer within a psychosocial model. They also emphasised the importance of being proactive and adopting preventive approaches. When the budget constraint was introduced, HSCPs tended to prioritise personal care and clinical needs. Two heuristics were identified. Firstly, with constrained resources, personal care and clinical needs of the person, and carer burden are prioritised (H2); and secondly, with constrained resources, proactive or preventive care for the person with dementia and the carer, and psychosocial needs for both are not prioritised (H3).

Table 4. Synthesis of themes 2 and 5 in both conditions to identify heuristics.

Theme 2: What Needs?
No constraint	Allocation outcomes	Budget constraint	Allocation outcomes
•   Needs considered in a holistic way for both the person and the carer - physical., medical and social/psychological •   Emphasis on intervening early to develop care relationships, maintain abilities and to prevent premature deterioration or crisis	Services: Full array of services and supports allocated to meet the identified separate needs of person and carer based on preferences of person and carer Functions: Emphasis on all functions: discipline- specific assessment for clinical needs; making referrals and linking the person and carer with a range of services; regular and proactive monitoring; and coordination of the range of responses Roles: Full range of HSCP disciplines involved	•   Personal care ‘meeting basic needs’ prioritised above everything else •   Essential clinical needs and/or clinical needs that might increase risk are prioritised •   Carer burden prioritised •   Early intervention and prevention not prioritised Social/psychological needs not prioritised	Services: Home care prioritised - hours for personal care only to meet the direct needs of the person and indirectly support the carer. Referral to mental health services and other clinical services only prioritised if identified needs in these areas. Small amount of low cost psychosocial support allocated – e.g. support group for both, or one week respite per annum for carer to prevent burn out. Functions: All functions scaled back. Emphasis on monitoring to address safety issues and risk. No proactive or preventive referrals. Less coordination as fewer services. Roles: Narrower range of HSCPs involved –just for needs identified in case vignettes. No early intervention.
		Heuristic 2: with constrained resources, personal care and clinical needs of the person, and carer burden are prioritised (H2). Heuristic 3: with constrained resources, proactive or preventive care for the person with dementia and the carer, and psychosocial needs for both are not prioritised (H3).

HSCP, health and social care professionals.

In Table 5, the data from theme 3 context are combined with theme 5 allocation outcomes under the two conditions. The use of contextual knowledge, of the person/family, culture/values and the wider service context are critical in shaping the service response. The lack of a constraint allowed the participants to take full account of context and to tailor the supports to suit the context. The effect of the constraint was to narrow the range of contextual factors considered to those that might pose or exacerbate risk. The resulting heuristic is framed as: with constrained resources, a limited number of personal context factors are considered – those which pose a risk and those which most directly relate to the person and/or impinge on the ability of the carer to provide support are to the fore (H4). However, participants recognised that they need to use their knowledge of the person and family to shape how they provide support and not to go in with too much, too soon but to use the options of trying different supports and scaling up or down as needs change: need as much knowledge about the person and their circumstances as possible to tailor the optimum support package for this person at this point in time and to avoid under- or over-provision (H5).

Table 5. Synthesis of theme 3 and 5 in both conditions to identify heuristics.

Theme 3: Context
No constraint	Allocation outcomes	Budget constraint	Allocation outcomes
Multiple variables considered and effort made to take the personal and family context into account in allocating service response •   Understanding and knowledge of the range of potential services and supports (clinical, psychological and social)	Service and other responses take into account personal and family context and preferences. Wider knowledge of potential services and supports enables the HSCP to tailor the service response to the individual needs of clients.	•   People living alone are prioritised •   People with one carer of advanced age and/or with significant physical or mental health difficulties are prioritised    •   People with poor living conditions are prioritised	Services: Services which fill several functions are prioritised e.g. day care – ‘supervision’ for the day, meal provided and social contact. Preferences not given priority Functions: All functions scaled back. Emphasis on monitoring to address safety issues and risk. Roles: Narrower range of HSCPs involved –just for needs identified in case vignettes. No early intervention.
		Heuristic 4: With constrained resources a limited number of personal context factors are considered – those that pose a risk and those that most directly relate to the person and/or impinge on the ability of the carer to provide support are to the fore. Heuristic 5: Need as much knowledge about the person and their circumstances as possible, to tailor the optimum support package for this person at this point in time and to avoid under- or over-provision.

HSCP, health and social care professionals.

Discussion

Decision making on resource allocation in healthcare in Ireland has long been described as being opaque and ad hoc, with poorly documented processes (Oireachtas Committee on the Future of Healthcare, 2017; Tussing, 1985). This study presents novel empirical data on resource allocation decision making in community-based dementia care. Micro-level (individual care) and meso-level (local budgetary level) decision making is examined in two scenarios: with and without a budget constraint. The five themes identified in the analysis of the qualitative data from the study illustrate the range of information HSCPs are taking into account as they make these decisions. The framework shows how this information is used to make decisions and reveals the importance of contexts: personal, cultural and system, in shaping these decisions.

Five decision rules or ‘heuristics’ were identified – essentially short cuts or ‘rules of thumb’ which are unwritten but which emerge in the contrast between the two conditions of budget constraint and no constraint. These heuristics provide a new and greater insight into how decisions around dementia care are made and how budget constraints influence decisions. Understanding resource allocation processes is important in the current budgetary context in health of increasing demands on limited resources. The resultant emphasis on ‘doing more with less’ (Burke et al., 2014) presents a particular challenge for dementia services which have been largely under-developed in Ireland. The data from this study elucidates the effect of constraints on decision-making and care and in doing so, highlights the gap between policy rhetoric and implementation when there are limited resources, but also points to ways in which we might maximise current resources.

Freedom from a budget constraint allowed HSCPs to think about the needs of the person, carer and family separately (H1) and to consider a much broader range of services, many of which they would not normally consider. They also took a more expansive view on what needs should be considered, with a particular emphasis on adopting a proactive approach to preventing or limiting potential future need (H3). In the budget constraint scenario, participants described having to cut ‘all the good things’ or cut ‘quality of life’ as they had to prioritise personal care needs at a minimum (H2). Decision makers were often conflicted about the focus on personal care needs, recognising that people with dementia were likely to have multiple social and psychological needs, not all of which could be addressed by simply providing additional hours of nursing or home care.

The effect of the budget constraint overall was to narrow all considerations, limiting the type of needs considered and the range of services and supports, resulting in a largely reactive, less personalised system of care (H2, H3). Services for carers were reduced to the minimum that would support them to continue caring, rather than services that might also enhance their quality of life (H1). These effects are counter to stated policy goals of personalised care, prevention, maintaining ability and supporting carers (Department of Health, 2012; Department of Health, 2013; Department of Health, 2014).

The study demonstrated that while HSCPs can make complex resource allocation decisions, they found the process at times frustrating, also raising ethical concerns. The frustration arose from the effect of the constraint in reducing the possibility of a proactive preventive approach, which they felt would be beneficial and potentially cost saving. The imperative to ‘reduce services’ to people who really needed support, in order to meet the budget constraint was a source of ethical concern which has been reported in other studies (Scott et al., 2019).

The range of needs represented in the six case types provided an opportunity to examine decision making across the course of dementia. Previous studies have typically focused on cases at the boundary of care between the community and residential care, i.e. cases 5 and 6 in this study (Tucker et al., 2016). The inclusion of cases with a lower level of need and those at an earlier stage of dementia prompted discussion of the importance of being proactive in supporting the person to maintain their abilities over the course of the disease. This was a particularly strong feature driving resource allocation in the NBC scenario. Concern for people with lower level needs was maintained even when budget constraints were introduced, suggesting that fairness played some role in the decision-making process (Scott et al., 2019). Participants’ allocated services to all dementia case types, even if they had a low level of relative need, although they acknowledged that this is not what would happen in practice, as cases with low level needs would typically be ‘waitlisted’. This tension about balancing spend on high need individuals and their immediate care versus spend on services which may have benefits later in the care pathway exists in many care systems, and is resolved too often by ignoring or underplaying prevention (Livingston et al., 2020)

Responding to needs was not as straightforward as matching a service to a need (Theme 5). HSCPs described a number of functions performed by an array of services and they often allocated services in order to meet multiple needs. For example, day care provision can meet needs for social contact, meaningful activities, nutrition and monitoring by a health professional as well as respite for the carer. Contacts with different health professionals and services are potentially opportunities to provide information, emotional support and signposting and many HSCPs do this informally. This practice is analogous to the ‘making every contact count’ model. Rather than a potentially unhelpful dichotomy between clinical and social care, the provision of good quality responsive care, provided by trained professionals operating flexibly and to the maximum of their role, can potentially address a number of needs in one engagement.

What do these findings mean for resource allocation in practice? They demonstrate the importance of an integrated and co-produced assessment process that has a consistent way of describing a person’s preferences, living circumstances and availability of informal care, as well as their professionally assessed clinical and medical needs. Many countries have moved towards a single assessment strategy, including; England (Challis et al., 2010); Wales (Wales Government, 2014); and Canada (Hogeveen et al., 2017); and a Single Assessment Tool (SAT) is being implemented in Ireland (HSE, 2017).

A deep understanding of the person’s priorities and needs is a pre-requisite for personalisation (Wilberforce et al., 2017), ensuring that the person gets the right amount of support to maintain their abilities and autonomy, rather than providing inappropriate support (Keogh et al., 2018a). Such an approach would be relevant to all aspects of the dementia care pathway from diagnosis and initial support services to more intensive care in the later stages, perhaps involving case management (Challis et al., 2002; Challis, 2003). If we are serious about implementing personalised services, HSCPs need to have access to, and understand the role and function of, a wider array of potential services and supports, such as in a social prescribing model (Brandling & House, 2008). Thus, cases that are earlier in the course of dementia may still be ‘waitlisted’ in terms of formal health services but could be referred to an array of psychosocial supports such as support groups, Alzheimer cafes and community activities. This requires resourcing for a wider array of such supports nationally, which is still at very low levels (Keogh et al., 2020). There has been too much conservatism in the menu of services and supports that are currently available for people with dementia. This paper has shown a willingness among HSCPs to draw on psychosocial supports if these services are available.

A more holistic assessment process with a good knowledge of the person and careful consideration of a wide array of responses requires allocated time on the part of HSCPs. The use of heuristics was not just because of the resource constraint. Heuristics are short cuts or rules of thumb when a large amount of information needs to be considered in time-pressured situations. What could be considered a ‘conflation’ of needs with services, could alternatively, be a highly internalised decision making process on the part of the HSCP where, through clinical experience and long practice, they make a quick assessment based on the available information and identify the most appropriate existing service that meets multiple needs – ‘this person needs day care’. Greater time and engagement in a shared decision making process with the person and family may result in a more responsive and tailored care plan (Howard et al., 2019; Keogh et al., 2018b). Heuristics are understandable in the face of budget constraints and time pressures, but too often they are bounded by existing models of provision and therefore can never capture the uniqueness and complexity of individual circumstances.

Conclusion

The qualitative data examined in this paper provides both micro- and meso-level exploration of resource allocation decision-making among HSCPs for people with dementia living at home in Ireland. Participants in the study were asked to make decisions on resource allocation for six different dementia case types, representing just under half of all people with dementia in Ireland. These decisions were made under constrained budget scenarios and unconstrained budget scenarios. Freedom from a budget constraint allowed HSCPs to consider a broader range of services and to take a more expansive view of need, with a particular emphasis on proactive, preventative responses. The effect of the budget constraint was to narrow all options, curtailing the range of service and supports provided, resulting in a largely reactive, less personalised system of care. The budget constraint led to the adoption of heuristic rules, which reinforced existing provision and supported a focus on core personal care needs over more psychosocial models of care. However, even with budget constraints, HSCPs provided some level of support to people with relatively low levels of need. The critical question may not lie between the influence of constrained or unconstrained budgets, since all care systems operate under a degree of scarcity and constraint. Rather, it is what level of additional resource in dementia care would facilitate a wider range and quality of such services in the community.

Data availability

It was not possible to remove identifying details sufficiently from the data in this study (focus group and interview transcripts), to ensure the anonymity of the research participants. As a result, this data cannot be made available publicly. However, data from the current research can be made available for further research upon reasonable request if the research team is assured participants’ anonymity can be protected. To access the data, please contact the corresponding author (fiona.keogh@nuigalway.ie). Researchers will be asked to provide a short proposal on how the data will be used before access is granted.