Co-designing dementia care to improve value (v4)
Research type
Research Study
Full title
Co-designing dementia care to improve value. Action research project involving patients, carers, providers and commissioners of health and social care in Durham
IRAS ID
213737
Contact name
Mara Airoldi
Contact email
Sponsor organisation
University of Oxford
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Research Summary:
There is a growing body of research about effective and best value ways to care for people with dementia. Yet care often falls short of recommendations. The primary objective of the research programme is twofold:- to generate a shared understanding across the system of how biopsychosocial aspects of dementia should inform the design of optimal care packages and the nature of tipping points at which people with dementia or their families would benefit from step changes in support, including taking up formal services or moving to a care home
- to identify the barriers and facilitators to co-designing and implementing quality improvements in dementia care.
This is an action-research project funded by the Health Foundation, taking place in the Durham area over five years (2016-20). The first phase of our research is diagnostic and aims to describe current services and identify problems.
We are submitting for ethics approval this first phase of research.
Summary of Results:
Dementia is one of most common health conditions in England and internationally. People living with dementia requires care, treatment, and support from health services, social care and family and friends provide care and support as well often to fill the gaps left by formal services. Providing care and support to people living with dementia is difficult and resource-intensive, because of the progressive nature of the condition and because people may need help with several activities or aspects of their life, and they need may change over time.
Our study aimed to improve dementia care and support in County Durham by involving people living with dementia and their unpaid carers and professionals and practitioners from the health sector, social care, and third sector organisations. The study was participatory research because it aimed to do research with key local stakeholders and people with lived experience, not to them. The study was organised in three phases, as follows
• In the ‘diagnostic’ phase (2015-2018), we described the local dementia care system services and identified the lived experience of care and support by people with dementia and their family carers
• In the ‘improvement’ phase (2017-2018), we identified two areas requiring improvement and we designed a series of interventions aimed at delivering improvement in practice
• In the 'evaluation' phase we aimed to evaluate the identified improvements (2019-2021)An additional line of work was added during the COVID pandemic when the study was interrupted.
Diagnostic phase
In the diagnostic phase we mapped out how the local dementia care system was organised, we held two workshops with local stakeholders (one in May and one in September 2016), and we also carried out 24 interviews and two focus groups (10 participants in total) with a mix of people with dementia and family carers living in the study site (throughout 2017 and 2018). Interviewees and focus group participants highlighted multiple care needs and a wide range of experiences in accessing and using care and support. Being able to go out and about was the most commonly reported need among people living with dementia and yet it was often unmet, as we discussed in this article (De Poli, Oyebode, Airoldi, et al., 2020). Family carers often talked about their experience of looking for information and how difficult it was to access the information they needed when they needed it. In this article De Poli, n.d., we delved into this issue and explained the reported variation in the satisfaction of the information need using the concept of information behaviour.
Improvement phase
Results of the diagnostic phase were fed into the improvement phase of the work. Local stakeholders agreed to tackle two issues among those identified in the diagnostic phase.
Area for improvement 1
The first issue was about the unmet information need reported by people living with dementia and their family carers. To address this issue, local stakeholders with an interest in this topic joined a local working group (including commissioners, statutory service providers, third sector organisations providing support and care to people with dementia and family carers, a professional designer, alongside the research team) who had the remit of developing an information leaflet and planning its dissemination in practice.
The leaflet was co-designed in collaboration with people living with dementia and their families. In its final form, the leaflet listed local services clustered around four main themes (‘I want to speak to someone for advice and support’, ‘I want to live safely and with the rig. ht support’, ‘I want to know what to do in a crisis’ and ‘Where can I go for more information?’). It could be printed out on a two-sided A4 using a high contrast colour combination.
The working group agreed a phased implementation process. First, the Community Mental Health Services for Older People (CMHSOP) within the local mental health trust started handing out the leaflet to patients in June 2019. The CMHSOP were identified as the first implementation route because of their key role in diagnosing dementia and in the resulting post-diagnostic care planning. We provided an overview of the process that led to design of the intervention, outlined the implementation strategy, and details the evaluation plan for the intervention in De Poli, Oyebode, Binns, et al., 2020.
Second, the leaflet was made available on the clinical system used in primary care (December 2019). GP practices were invited to post the leaflet to any patients diagnosed with dementia or memory problems on their system.
Third, the leaflet was made available on the website of their County Council (February 2020).Area for improvement 2
The second issue that was identified in the diagnostic phase of the study was out of hours care for people living with dementia. In June 2018 we held a workshop with local stakeholders and through discussion, the group identified three specific issues affecting out of hours care which were ultimately narrowed down to three.
The first one was around emergency health care planning and the use of Emergency Health Care Plans (EHCPs) for people living with dementia. EHCPs were specifically intended as a formal plan to document wishes and preferences for care by the person with dementia in case of a health- related emergency. People living with dementia and their families reported mixed experience about how EHCPs were used in practice.
The second was around the role of 111 in providing effective support to somebody with dementia in case of an urgent medical situation. Issues were raised in relation to the accuracy of the Directory of Services on which 111 call handlers relied on. It was also raised that 111 call handlers would not know whether the caller was someone with dementia and, depending on the situation, it could have been difficult to identify the root issue of their call. Given the centralised system around 111, this issue was recognised as important, but was not considered for further work within the study.
The third issue was about the volume of out-of-hours avoidable hospital admissions (i.e., an unplanned hospitalisation for chronic ambulatory care sensitive conditions or an emergency admission for an acute condition that should not usually require hospital admission) among people with a diagnosis of dementia.
Emergency Health Care Plans (EHCPs). The research team linked up with an existing local working group on Emergency Health Care Plans (EHCPs). We conducted an administrative audit of a sample of EHCPs written for someone with dementia in the study site complemented by in-depth interviews with stakeholders involved in the writing and using EHCPs.
Pilot intervention to reduce out of hours avoidable admissions. We contributed developing a business case for a community care and support from an out of hours (OOH) bank of health care assistants to help reduce out of hours avoidable admissions for people living with dementia. The business case identified the service specifications and costed the staffing level required by the intervention. A site was identified for a 6-month pilot with the aim of evaluating the feasibility of the intervention. The business case was submitted to the local Clinical Commissioning Group in February 2020. Due to the COVID pandemic, no further action was taken at that point and the work on the intervention never resumed.Evaluation phase
Area for improvement 1
Dissemination via CMHSOP. We formally evaluated the process that led to the dissemination of the leaflet via the CMHSOP (process evaluation, reported in (De Poli, n.d.-b)). We carried out series of interviews with CMHSOP staff (in 2019, 2020, 2021) and a focus group with the leaflet working group (June 2021) to understand how the leaflet was used in practice by the CMHSOP staff.
The process evaluation assessed the recommended implementation outcomes. CMHSOP staff showed different strategies for offering the leaflet in clinical practice (reach), but all appeared to offer the leaflet to their patients multiple times and at every opportunity (dose). Some seemed to use a blanket approach when offering the leaflet. others changed the way they offered it depending on the patients and their personal and family circumstances. The intervention was successfully integrated in practice (penetration, feasibility) and it was well received by the staff (acceptability, adoption). The intervention was perceived to address a need and to be compatible with the service (appropriateness), also in the longer term (sustainability). The evaluation provided an in-depth understanding of how CMHSOP staff gave out information to people diagnosed with dementia. Only some staff showed an approach to information giving seemed consistent with a person-centred, relational, and situated approach to care that took in into account the circumstances of the information recipient.
The evaluation of the pilot of the dissemination of the leaflet in primary care provided results for the implementing practices and for their patients. From the perspective of the implementing practices that were surveyed for evaluation purposes (20% response rate), key enablers of the implementation of the intervention were: having a cover letter already prepared by the Clinical Commissioning Group (CCG) who endorsed the leaflet, interest within the practice in dementia, clear instructions from the CCG about how to identify the patients to whom to post the leaflet, clear communication from the CCG about what was expected by the practices and why, capacity within the practice, and the practice’s interest in delivering good care to their patients. Barriers to the dissemination of the leaflet by practices were capacity issues in primary care, postage costs, and their concern around whether dementia patients would read and engage with the leaflet.
The feedback collected from the patients who received the leaflet and were surveyed for evaluation purposes (response rate 4%, of which 80% were family carers) showed that the leaflet provided the right level of information. the leaflet was perceived as useful and could prompt people approaching services. Respondents were keen to receive updates, confirming the need of providing information at different points in time or on a regular basis.Area for improvement 2
Emergency Health Care Plans (EHCPs)
In 2019, we conducted an administrative audit of a random sample of 50 EHCPs written for someone living with dementia in County Durham. The audit showed that the level of completeness of the plans and fulfilment of the audit standards was hard to judge from the forms. The plans may have reflected the involvement of the individual patient, but it was not possible to gauge whether the patient’s views were reflected in the plan. The plans used highly standardized statements which may not be consistent with indivdualised, person-centred care. Often the plans were not written in lay language. Although the plans identified actions to be taken in case of an emergency, they did not indicate who was expected to take the actions outlined. Plans were not up-to-date (e.g. 50% plans were over 12 months old).
We completed the administrative audit with interviews with that we conducted in May-September 2019. The interviews highlighted what aspects of the EHCPs worked well, and what aspects worked less well.
Interviewees highlighted that EHCPs facilitated positive collaborative working between different healthcare professionals, were becoming more embedded in the healthcare system, resulting in greater awareness and confidence among staff, encouraged healthcare professionals to assess service users’ circumstances in full, resulting in better quality of care. This was particularly relevant for people with dementia, who are often unable to communicate healthcare issues during a crisis. Participants acknowledged that having healthcare strategies written down in EHCPs can reassure family carers that service users will receive appropriate care in a crisis.
However, some issues were also identified. EHCPs were not always devised early enough after diagnosis. Often, it was challenging to get all agents involved in a patient’s healthcare network to contribute to, and make use of, EHCPs, in particular when family members or patients were not in agreement about which healthcare approach was most appropriate. Some family carers feared that an EHCP would prevent patients from getting the care they required. When EHCPs were poorly constructed, they did not include enough information to enable healthcare professionals to make effective use of them. Healthcare professionals claimed that EHCPs could not cover every healthcare issue that might arise, though family carers would like this to be possible. There was uncertainty among healthcare professionals and family carers about the legal status of EHCPs. No particular group of healthcare professionals seemed to have ownership of EHCPs. The degree of awareness of EHCPs varied across healthcare professionals and was particular low among family carers. There was a lack of training (and few guidelines) focused on teaching healthcare professionals how to construct effective EHCPs. It was not always apparent to healthcare professionals that an EHCP is in place during a healthcare crisis. Inexperienced staff, fearful of making mistakes, may disregard the content of EHCPs, admitting service users to hospital when this was not the patient’s or the family’s wish.Research ethics in the context of collaborative research with vulnerable groups During the COVID pandemic when the study was interrupted, we carried out some work into how research ethics system – which regulates what research is carried out in England and how research activities can take place – deals with collaborative research with groups labelled or potentially perceived as vulnerable. This work stemmed from the experience of the research team when seeking research ethics and governance approval for our study.
We reviewed policy documents that outline how the English research ethics system is expected to work, reviewed the published literature to understand how the topic had been discussed in the literature, and conducted a focus group with academic researchers with relevant research experience to understand their experience of navigating the English research ethics system. This body of work has been reported in (De Poli & Oyebode, 2023).
We also conducted a two rounds Delphi study with a larger group of academic researchers to identify practical recommendations to ensure a better fit between principles and practices of research ethics and those of collaborative research. This work in reported in (De Poli et al., n.d.)REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
16/WM/0397
Date of REC Opinion
7 Oct 2016
REC opinion
Further Information Favourable Opinion