Well-being and well-becoming of family carers of people living with rare dementias: Capturing the costs, effectiveness and wider social value of support groups

Rhiannon Tudor Edwards and Bethany Anthony

Posted: 11.03.22

In the UK, most NHS care is paid for out of our taxes, and we have a mixed model of the finance and provision of social care. Much support for people living with dementia, and specifically with rare dementias, comes from the third sector i.e. support organisations, funded by charities like The National Brain Appeal. We are used to hearing about the National Institute for Health and Care Excellence (NICE), and Health Technology Assessment (HTA) which takes quite a specific arguably narrow and relatively focussed view of the range of costs and effectiveness that are identified, measured and valued by health economists.  Often this involves the calculation of the cost per Quality-Adjusted Life Year (QALY) from a specific health care intervention, and often this is done alongside a randomised controlled trial (RCT) - known as gold standard clinical evidence.

In the provision of care and support for people diagnosed, living with and dying as a result of a rare dementia, things get quite challenging for researchers including health economists. We are quite good at measuring costs. First, we pick a perspective of analysis and often this is the NHS, or NHS and personal social services (which includes social care). Or, we can choose a wider perspective which is that of society. This perspective takes into account costs, financial and other, that fall upon family carers, and includes wider spill-over outcomes of interest, such as supporting the resilience of family carers, enabling a good end of life, and supporting relatives and carers when the person with a rare dementia has passed away. The current study of support groups for people living with rare dementias, and their carers, requires this wider perspective of analysis and an agility by us as researchers to bring a range of methods used in health economics to the table to give an authentic and sustainable picture of value for money in how resources are used, wherever they come from, NHS, social care, or charities to support these people. Another challenge that limits reliance on a cost per QALY model as our prime focus as health economists is that we are dealing here with degenerative conditions that have a downwards trajectory in terms of health-related quality of life. What is crucial is to identify, measure and value the relevant range of costs and outcomes to the person with a rare dementia, and their family carers, and indeed, their formal carers too.

Here at the Centre for Health Economics and Medicines Evaluation (CHEME) at Bangor University in North Wales, and specifically the Public Health and Prevention Economics Group (PHERG), which includes Social Value measurement, we are publishing our health economics analysis plan (HEAP) or protocol that aims to encapsulate our approach to evaluating the costs, effects and wider social value of the Rare Dementias Support Group Community. We have a track record of working on studies on dementia care and some specific conditions such as Huntington’s dementia. 

Rare Dementia Support (RDS) run support groups that bring people together as a community and provide information and support to people with rare forms of dementia, their families, friends and healthcare professionals. RDS is a world-leading, UK-based service provided by the UCL Dementia Research Centre (DRC) and partners and funded by The National Brain Appeal. RDS supports people affected by 7 of the rare dementias including carers and bereaved carers. These are: Familial Alzheimer’s disease (FAD), frontotemporal dementia (FTD), familial frontotemporal dementia (fFTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), Lewy body dementia (LBD) and Young-onset Alzheimer’s disease (YOAD). Rare Dementia Support (RDS) aims to empower, guide and inform people living with a rare dementia diagnosis and those who care about them. Combining social, emotional and practical support with research and training about rare dementias, RDS works to increase awareness about these conditions so that everyone affected by rare dementias feels better supported in their communities.

The Rare Dementia Support Impact study is a five-year research programme funded by the NIHR and the Economic and Social Research Council (ESRC) led by University College London, seeking to evaluate the impact of different types of support on people living with or alongside a rare dementia. We are privileged to be partners responsible for health economics and work in a collaborative, cross-disciplinary way throughout. We have our own work package which we have divided into seven work modules, but really consideration of costs is relevant to all of the work packages as a cross-cutting theme.

Our overarching research questions are as follows:

1. How cost-effective are support groups relative to standard health and social care models?
2. What are the wider costs and consequences of rare dementia support groups delivered in different ways?
3. What are the costs associated with the pathways to diagnosis?

To this, we are adding a wider question i.e. how can we view these support groups within a well-being and well-becoming model across the life-course?
What we already know – the first thing we are doing is to review published papers in the literature on the cost-effectiveness of support groups in dementia more widely.  There are not many papers, but we will build on the evidence that is already out there.

We then are moving on to Module 1: We know that the The National Brain Appeal funds the rare dementia support group service, and we know what posts this funds, but there may be hidden costs by contributions-in-kind by other members of staff (e.g. clinicians, research staff). We therefore don’t know per se the split between what RDS staff are doing in terms of direct support for people with rare dementias and their carers, and what research and administration activities they are completing, and therefore how much the total cost of the service in terms of staff time.

In Module 2 we will go on to cost the main activities – small groups, on-line webinars, and direct support and compare these with a range of reported outcomes in a cost-consequence analysis (CCA).

In Module 3 we will interrogate data on wider NHS, social care, third sector and informal care, using the Resource Utilisation in Dementia (RUD) instrument, and standard measures of health-related quality of life used in health economics (EQ-5D).

In Module 4, we will use the data from modules 1, 2 and 3 to construct an economic model. The purpose of economic models are to simplify and help us understand real world systems and networks, using data from a range of sources, often to extrapolate or forecast beyond the end of a clinical trial. In the case of this study, we are modelling what happens to patients diagnosed and living with and then dying from a rare dementia. We will model, using what we have found out from this study, the costs and effectiveness that the rare dementia support groups deliver, over and above what might have happened in the absence of the support groups. We will use data on people we are aware of, but who don’t interact for any reason with the support groups to inform this control group in the model. 

In Module 5, we will broaden our perspective to focus on social value of rare support groups through what is known as social return on investment (SROI) analysis. The central purpose of SROI is to address the challenge of measuring a wider concept of value, capturing aspects across the triple bottom line of economic, social and environmental value, where the analysis results in a ratio of benefits to costs and estimates the value created for every £1 invested. This method identifies relevant stakeholders and maps of the costs of delivering a service, such as the rare dementias support groups, and the wider outcomes for stakeholders, e.g. the informal carers, those who deliver the support groups, and wider community. We are interested in answers to questions like how long any positive impacts of attending the support groups last, if any benefit, what fraction specifically can be attributed to the support group activities of the community, and what would have happened in the absence of the support groups. For this we use quantitative data from surveys but also qualitative data from interviews with support group users. From a methodological perspective, SROI is rather like cost-benefit analysis and the challenging question is the capture of opportunity cost across these methods.

In Module 6, we are taking advantage of being in North Wales and surveying families of people living with a rare dementia or those who have lost someone recently as a result of a rare dementia, to trace their pathway to diagnosis of that rare dementia. Often this involves many visits to different clinical specialities, memory clinics and psychiatry services. We are taking a wider perspective on costs again here asking about the personal costs to family carers of travelling to these appointments, some of which may have been in the private sector. To these costs we will add the costs of NHS consultations which we can obtain from national reference costs.

Finally in Module 7, we will collaborate with study colleagues in North East Canada to look at the costs of service provision at a distance. Canada has a national provincial health care system a bit like the NHS in the UK. Distances are so huge, we will look at the diagnosis and support of people with rare dementias and the costs involved. There are lessons emerging in the cost-effectiveness of online support at a national and maybe even an international level where centres of excellence, like at UCL in London are able to reach out to people not able to access specialised diagnosis, long-term support and signposting locally. Returning to the well-being and well-becoming paradigm, in an associated study, we want to look at the costs and effectiveness of supporting bereaved family carers through these rare dementia support groups as this is so important for those for whom life goes on. It is important to understand how we can capture the costs and wider range of outcomes of helping people re-frame a difficult situation and hold a new reference point going forward with resilience. These are real challenges for health economists more widely and we in Bangor welcome this opportunity to collaborate and be a part of the Rare Dementias Study and future research collaborations.