The analysis of the Dementia UK database (WP 1) showed that, on average, the needs of carers being supported by Admiral Nurses reduced over time. However, as we were unable to link changes in carers’ needs to the input of the Admiral Nurses, we cannot say what caused this reduction. The Admiral Nurses do provide the types of support that are likely to help reduce carers’ level of need over time, or at least maintain these when situations become more complex, but to show a link between input and outcomes, additional information would be needed that the Admiral Nurses do not currently collect.
The database confirmed that Admiral Nurses are successfully targeting older carers, who are more likely to be affected by the demands of caring. The model employed typically involves triage, whereby those in most need receive greater levels of input, but those with lower levels of need can be escalated if/when their needs change.
The qualitative research with carers for WP 2 emphasised the value that carers place on continuity and ‘feeling supported’ as things progress. We identified three key outcome areas through this WP that are important to carers and appear to be influenced by carer support (and AN in particular). The first was confidence in caring, which carers said that they gained when they were supported by a specialist in dementia who knew them and their situation well. Having an ongoing relationship with such a professional, to whom they could turn to as things progressed, could give them the confidence to continue caring in spite of the difficulties and uncertainty they faced. We chose to measure carer confidence using the SEMD scale.46
The second outcome area identified by carers was their own quality of life, which we chose to measure using the ASCOT-Carer,45as this mapped most accurately onto the analysis of the qualitative data. In
particular, the ASCOT-Carer was the only tool in our shortlist of validated quality-of-life measures with a specific question on ‘feeling supported and encouraged’.
Finally, and not surprisingly, carers told us that the level and quality of support they received could affect their physical and mental health. We chose to measure this using the EQ-5D-5L65because of its common
use in economic evaluation and its relevance for NICE. However, subsequent health economic understanding the AN service convinced us that AN services are unlikely to have an effect on EQ-5D-5L scores, and
therefore we used this variable in the economic analysis as an explanatory variable in our main analysis. Feedback from testing suggested that our questionnaire was acceptable and comprehensible to carers. The acceptability of our chosen outcome measures was later confirmed by the high rates of completion of the outcome questions by survey participants. We thus feel that the questionnaire provides a useful evaluation framework for other dementia care services that might be expected to have an impact on carers.
Through the survey we identified a group of carers who were, as a group, older and more heavily involved in caring activity than found in nationally representative data about the carers of people with dementia. However, within this, the AN carers were even older and more heavily involved in caring, echoing what was observed in the administrative data. These differences probably reflect the study recruitment; carers who attend carers’ groups and who are known to statutory care and third-sector organisations are likely to be some way into the dementia caring journey, rather than at its beginning. Those known to AN services are likely to be even further into this journey and/or, as we saw in Chapter 4, struggling with caring. Admiral Nursing carers were more likely to report receiving emotional and social support and information, advice and knowledge from Admiral Nurses than carers using other types of carer support services, perhaps reflecting the personal and targeted nature of the relationship that Admiral Nurses are able to develop with carers.
We suspect that some differences between our AN and non-AN carers reflect the ‘natural history’ of caring for someone with dementia and the role that specialist support might play in maintaining people in the community. Spouses and partners were the largest group of main carers, both in the administrative data and among all carers in our survey. If the main carer is no longer able to provide the care that the person with dementia needs, younger family members may take over as the main carer, while the partner moves into a less involved role. The administrative data showed that increasing the amount of informal support that carers could access was a key part of what the Admiral Nurses were doing. Alternatively, AN services may step in to support older or more heavily involved carers who have no other source of informal support to continue, by improving their coping strategies and enabling them to take time for themselves. This, we conjecture, may thus prevent or delay admission to long-term care.
Given the heavy involvement of all of the carers, in terms of their caring status and activity, their overall levels of use of and practical support from other health and social care services were surprisingly low. Moreover, those carers who were accessing services related to their caring activities were often paying large amounts of money to do so and, for some perhaps, with consequent financial difficulties.
The health economics work, based on data collected through the survey, explored outcomes in the group of carers as a whole and compared AN and non-AN carers, in both cases controlling for other variables that might affect these outcomes.
Better health was associated with better carer outcomes, whereas worse carer outcomes were consistently associated with financial difficulties, the lack of anyone to stand in for the carer if they needed a short break, and reported severity of dementia.
The older age and heavier involvement of carers using AN services suggests that they may be receiving appropriately targeted support through AN on the basis that their needs are greater than those of carers with no AN support. Although initial analysis showed that AN carers had worse outcomes than non-AN carers, once the differences between the two groups were controlled for in the analysis, this difference disappeared. Indeed, AN carers had better outcomes, although these results were mostly not statistically
significant. Similarly, there was little difference in health and social care costs between AN and non-AN carers or in the costs of the people with dementia they cared for.
A key aim of WP 4 was to understand stakeholders’ views on the system-wide impact of services, such as AN, but it was clear that this impact was not well understood. Although support for carers might be able to reduce the impact on acute health and adult social care (in particular the need for long-term care), this was rarely measured. Nevertheless, participants in this part of the study did feel that preventative services were valuable and likely to reduce pressure on statutory services.
With an increasing use of joint commissioning for dementia services, cost savings from services that had a preventative role could accrue to both health and social care services. In fact, a large proportion of preventative services funding (including the Admiral Nurses themselves in one site) came from donations or other charitable sources, and as statutory funding grew scarcer, prevention and continuity seemed to be suffering.
Admiral Nurses were seen as a valuable, but expensive, resource. This was despite the fact that, in both of the sites that had AN, the nurses worked only with carers with the most complex needs, and often when other services were struggling. The difficulty of the cases they worked with was such that Admiral Nurses seemed to be the only professionals with the skills, capacity and remit to take them on. In the areas without AN, it was difficult to know who would deal with similar complexity. Other staff in dedicated dementia services were generally not qualified to work with the most complex cases, and the more specialised NHS services did not have the capacity to provide continuity. Although commissioners stress the importance of linking up services, information and signposting are not always sufficient for carers; they want and need a relationship with a named professional whom they can turn to as dementia progresses and its demands increase.
Given the challenge of reaching, and providing continuity to, growing numbers of people with dementia and their carers, the tiered approach through which specialist nurses work with and mentor less qualified support workers and escalate/de-escalate cases as and when necessary, without discharging them, seems promising.
The routine evaluation of services to support the carers of people with dementia (or, indeed, any carers) is still not in place. Our outcome measurement tools and data collection system were acceptable to carers and seen as relevant and useful to the Admiral Nurses we trained to use them. However, when it came to incorporating them into the routine data collection systems of one service for our pilot, the service could not find the capacity to try them out. In a climate of increased demand and reduced resources, improving data collection and evaluation systems is rarely prioritised. However, it is just such evaluative data that can prove the value of services to commissioners.
Dementia UK has agreed to incorporate the selected outcome measures into its new AN national data collection system, as hoped for as an outcome of this work. However, services and professionals need protected time to apply these and use the data collected to evaluate their services and demonstrate impact. As other work shows,20,21and as participants in our stakeholder workshop pointed out (see Appendix 1),
there is no single model of service that could possibly provide support for carers of people with dementia all the way from initial symptoms becoming evident, through the worsening of behaviour and physical health, to death. Carers’ needs across the dementia journey will vary substantially, both as symptoms and circumstances change and in relation to their characteristics and the support networks they do or do not have around them. Overall, the results of this study show that specialist nursing services can support the very oldest and most burdened carers, many of whom may be very close to the end of that journey. They can also act as resources for non-clinical dementia support workers and, indeed, other clinicians, and, if embedded well into dementia services across a locality, enable the system as a whole to offer appropriate ‘end-to-end’ care and support.