Work package 5 was designed to ensure that the learning from this research informs practice and supports future service evaluation. We proposed to work with Dementia UK to inform its data collection processes, using the data collection framework established in WP 2 as a starting point. The aim was to improve systems to collect data required for future evaluative research while also meeting the organisation’s administrative needs. This built on the work in prior stages to understand the feasibility for dementia service providers, and acceptability to carers, of using a range of validated outcome measures as part of routine data collection. We planned to pilot the new framework with one AN team to test its feasibility in the field.
Work package 5 began with a meeting between the University of York research team and the Dementia UK research team, as well the Dementia UK director of clinical services, the information technology development leads and the professional and practice development lead. It was agreed to concentrate on encouraging and supporting a local AN team to use the three standardised measures of carer outcome selected for the national survey (ASCOT-Carer, the EQ-5D and the SEMD) in their routine work. An AN service was invited and agreed to take part. The researchers provided training to staff from this service, along with other interested Admiral Nurses, at a practice development day in June 2017. The training covered:
l findings of the development work leading to the selection of the three outcome measures (WP 2)
l what these measures can be used for
l how to use the measures (including how to attribute scores and measure change over time).
Participants tried using the three measures during the session through role play and fed back to colleagues and the research team about their experiences. The ASCOT-Carer and the SEMD were felt to be very relevant to the work of the Admiral Nurses. It was noted that all three measures were straightforward to use, especially as self-completed questionnaires. In interview form, however, the questions could sound cumbersome, and it was noted that being asked to respond verbally to the nurse who delivered their care might encourage carers to respond in ways that they perceived to be desirable.
Participants considered the possibility of posting out the ASCOT-Carer to carers before their first appointment. As ASCOT-Carer is a short and user-friendly tool, it was generally felt that this could be successful. The selected service settled on this as its approach to pilot in WP 5.
The SEMD was felt to be particularly suited to measuring the outcomes of the training that the Admiral Nurses provide. Again, the selected service agreed to pilot the use of this tool, encouraging carers to complete it before they began training, at the end of training and at a follow-up point.
The research team kept in contact with the service over the following months. However, the service manager reported experiencing staffing shortages over this time, and towards the end of the pilot period she reported that there had not yet been any opportunity to build the new measures into their working practices. She was hopeful that over time they would be able to use the measures, but this would not be within the lifetime of the current NIHR Health Services and Delivery Research project.
Towards the end of the project, a representative from our research team joined a Dementia UK meeting to discuss and agree the outcome measures to be integrated into a new national AN data collection system. In the light of the findings from this research, and other feedback from key stakeholders, the tools chosen to measure outcomes for carers were the ASCOT-Carer and the SEMD.
Work package 6
The final stage of our project, WP 6, centred on a stakeholder workshop. Here we presented the findings of all elements of the research and worked with stakeholders to:
l identify key messages arising from the research
l discuss the collection of data at a local level to inform both service development and evaluation. We invited a range of stakeholders to the workshop, including people with dementia and their carers, decision-makers from health and social care commissioning and provider organisations (including the third sector) and local and national policy-makers.
Key messages arising from the research
The workshop was attended by 36 stakeholders, including carers, practitioners, commissioners and six members of the research team. Participants discussed the research findings and fed back key messages and implications. These have been grouped below under three headings: (1) overall messages from the research, (2) messages relating to AN in particular and (3) messages relating to the future evaluation of services for carers of people with dementia.
1. Overall messages from the research
l Participants noted the inconsistency of carer support across the country.
l Continuity of support for the carers of people with dementia is very important: people do not stop having dementia, so carers’ needs are ongoing.
l Participants were struck by the financial pressures carers are under (as evidenced by the survey findings). Statutory services do not always understand the financial impact of caring.
l Sleep deprivation seems to have a huge impact on carers’ lives. Night-sitting services are therefore very
important, but they are also very costly.
2. Messages relating to Admiral Nursing in particular
l The specialist knowledge that Admiral Nurses have (their unique insight into dementia and the service landscape, as well as their clinical background) is key.
l AN support and education is an important way to create, maintain and improve carer confidence (e.g. a positive steps programme). It is likely to enable the carers to carry on caring at home for longer.
l Admiral Nurses also work across service and professional boundaries to ensure access to other services.
l Admiral Nurses are a valuable resource, but they cannot be the answer for everything. In particular, they are involved in only the more complex cases; carers want the practitioners they deal with to have the type of expertise that Admiral Nurses have.
l There are not enough Admiral Nurses to help all carers, and not all carers have complex needs. However, preventing carers’ needs from escalating is also important. Admiral Nurses need to work collaboratively with other support workers to have the greatest reach, facilitating continuity and access to specialist knowledge more widely.
3. Messages relating to the future evaluation of services for carers of people with dementia
l This research seems to have looked at two different populations [one of carers with particularly complex needs (recruited through AN) and a ‘comparison’ group of carers with lower needs (recruited through voluntary-sector organisations and carers’ groups)]. What population of carers would be comparable with the carers who receive AN services?
l Part of the problem of identifying carers for research is that there is nowhere that carers are routinely and formally identified. People do not always self-identify as carers and so it can be difficult to know how many carers of people with dementia there are.
l As well as hidden carers, there are carers whose full caring roles are hidden (such as those caring for more than one person) and carers with comorbidities.
l It is important to collect evidence of things that are harder to quantify, such as the impact of Admiral Nurses and other support services for carers.
Collecting data at a local level to inform both service development and evaluation In the second group work session of the day, participants were asked about the information that services currently collect from dementia carers and what other information might be useful for service evaluation. The key points have been grouped under three headings: (1) problems/challenges with evaluating carers’ services, (2) missed opportunities/things that could be done better and (3) ways forward.
1. Problems/challenges with evaluating carers’ services
l Carers are asked the same questions repeatedly. This is probably because services and assessments are fragmented.
l Voluntary-sector organisations might not have the infrastructure to collect all of the information that commissioners are asking for.
l There is variability in the quality of commissioning of services for the carers of people with dementia.
l There are many things that could be measured and a multiplicity of commissioners and funders who may want different data about different outcomes. This can be a burden on services and on carers.
l When assessing services and aiming to improve them, it is important to consider context. We are currently in a service and policy context of austerity (cost savings) and this will influence what information can/should be collected.
l What do you do with the data when you have them?
2. Missed opportunities/things that could be done better
l Different measures are used by different services (so the evidence is not comparable).
l Some services use outcome measures at the initial assessment (baseline), but these are not followed up later on.
l Not all carers are getting carers’ assessments, and, if they are, these are not often reviewed. The carers
who do get a carers’ assessment are asked important questions, but often nothing is done with the information collected. Carers’ assessments and reviews need to be turned into action.
l Outcome measures are used in other services: why not dementia/carers’ services? Some collect a lot of
statistics about service user characteristics but nothing about outcomes. We need a change in culture.
3. Ways forward
l It would help to have a steer from commissioners about what outcomes they want to see.
l In some localities, qualitative key performance indicators were used to shape the outcomes that commissioners want.
l It is important to have a baseline for measurement. Carers’ assessments could be used to create a real
foundation for carer-related baseline information.
l Goal-setting with individuals and monitoring progress could be another solution. This can be embedded into everyday practice with the carer, but it is important that workers are committed to the measure.
l Sensitivity and good communication skills are needed to enable staff to ask baseline questions early in the service provision relationship.
l It is easier to do before-and-after assessments when it comes to evaluating training. (Perhaps this is why there is more evidence on the impact of carer training than on other forms of intervention?)
l In other areas of health and social care, the expectation is often that a person will get better; this is not the case for people with dementia, and so services (and carers) need to manage their deterioration. This requires access to information through learning, education and support. Good questions to assess whether or not a service is supporting a carer well are:
¢ How confident do carers feel in making decisions about the person they care for?
¢ How much confidence do carers have in the professionals they come into contact with? These key points were circulated to workshop participants for final comments and then used alongside the project findings to inform a four-page project summary, which was distributed widely as one of our project outputs.