Feasibility of recruitment and training carers of people with dementia as a route to Cochrane-NHS engagement

Award Number
Evidence Synthesis Programme
Status / Stage
2 September 2010 -
30 November 2011
Duration (calculated)
01 years 02 months
Funding Amount
Funder/Grant study page
Contracted Centre
Oxfordshire & Buckinghamshire Mental Health NHS Foundation Trust
Contracted Centre Webpage
Principal Investigator
Dr Rupert McShane
PI Contact
WHO Catergories
Models across the continuum of care
Disease Type
Dementia (Unspecified)

CPEC Review Info
Reference ID94
ResearcherReside Team


Award Number10/4000/05
Status / StageCompleted
Start Date20100902
End Date20111130
Duration (calculated) 01 years 02 months
Funder/Grant study pageNIHR
Contracted CentreOxfordshire & Buckinghamshire Mental Health NHS Foundation Trust
Contracted Centre Webpage
Funding Amount£112,075.00


The Cochrane Dementia and Cognitive Improvement Group (CDCIG) has a longstanding commitment to maintaining a study-based register. A recent grant from the American Alzheimer’s Association has allowed us to update the register, to include studies of cognitive improvement as well as dementia, and to make it freely available on the web: http://www.medicine.ox.ac.uk/alois/ The register, now named ALOIS after Alois Alzheimer, will soon become the primary resource for searches for all CDCIG reviews. It needs continued maintenance, quality checking, and expansion to include studies which may yield data for Diagnostic test Accuracy reviews. We have found that untrained, retired professionals can, with a little guidance, undertake and enjoy the task of reading reports of trials, extracting data and populating the register. They derive a sense of satisfaction from contributing to the research effort in dementia. Quality control rests with the core staff of the group, but can be enhanced by dual entry. ‘Virtual volunteering’ is a particularly attractive form of volunteering for the IT literate carer of the patient with dementia because finding someone else to look after the patient while the carer goes to meetings is often not easy. This experience has been the spur to consider using the task of populating ALOIS as a ‘hook’ to get carers involved in dementia-related Evidence Based Medicine education so that they can advocate and participate more effectively. THE IMPORTANCE OF EDUCATING CARERS As the partners in chronic disease management, carers are increasingly expert. The better educated carers are about evidence, the higher will be the quality of their advocacy. Indignation about healthcare prioritisation decisions can spread rapidly within carer communities and sometimes it suits the agenda of NHS staff and industry to fan that indignation. More rational advocacy is in the interest of everyone. There are several predictable scenarios which illustrate why education is needed now. 1. Cholinesterase inhibitors are going generic in May 2011, with an anticipated fall to 20% of current prices. At this price, the drugs will clearly be cost effective across a wide range of severity of Alzheimer’s disease. GPs will become more widely involved in prescribing, and potentially in initiating these drugs. Those who do not currently refer ‘because there is no point cholinesterase inhibitors are not available in mild Alzheimer’s disease’ are likely to start referring earlier. However, it is not widely known that, in the earlier pre-dementia stage of symptoms (mild cognitive impairment), cholinesterase inhibitors are not only not effective, but are associated with higher death rates. 2. PET-scan ligands which bind to amyloid are likely to be licensed for the diagnosis of Alzheimer’s disease. However, it is not known whether the amyloid being imaged is in fact pathological or merely an epiphenomenon. Whilst those with pre-dementia ‘mild cognitive impairment’ PLUS a substantial burden of brain amyloid are more likely to progress to dementia, the rate of that progression is variable. Crucially, many people without dementia have amyloid in their brain at post-mortem. The pressure for ‘early diagnosis’, which is enshrined in national policy in the Dementia Strategy, coupled with the expense of PET scanning, is a recipe for disappointed expectations. 3. It is possible that new efficacious drugs will be licensed in the next two years. For example, results of a trial which is designed to confirm a previous, positive, phase 3 trial will be released before June 2010 for latreperdine (Dimebon). The impact of the judgements which were made about the cost-effectiveness of ChEIs risk being reprised. 4. Direct-to-consumer advertising is imminent. Eisai is now planning to support patients by offering a service in which those who start ‘Aricept’ (AKA donepezil) are phoned up weekly. We believe that the Cochrane reputation for unbiased, systematic analysis-carer engagement is, in an age of political, industrial and institutional ‘spin’, an important opportunity to provide a trusted platform for carer education and thereby Cochrane NHS engagement. A NEW TWIST ON AN OLD TALE (with apologies to Muir Gray) The stork and the fox enjoyed teasing each other. One hot, hot day, the fox offered the thirsty stork beautiful clear water from the stream. She was delighted at first but lost interest when the fox presented it in such a shallow dish that she could not drink it. The next day she had her revenge. The fox was enthusiastic about her invitation to drink exotic sparkling mineral water, until it arrived in a narrow-necked jar that was much too small for his snout. They were both about to walk away saying, ‘I wasn’t thirsty anyway’, when their mutual friend the party-mad penguin pitched up. ‘Guess what! I just got involved in building a factory which converts sewage into pure water. Amazing! Let’s have a drink and I’ll tell you about it’. Somehow, they all found a way to enjoy the water. MORAL: Whether you fancy a drink is determined more by the enthusiasms of the company you keep than the shape of the glass. TRANSLATION: NHS staff engaged in dementia care will be more influenced to engage with Cochrane by an enthusiastic carer who is actively involved in contributing to Cochrane than by reformatting of systematic reviews. Theme and scope of proposed project This project tests the feasibility of recruiting and educating a group of graduate-level, volunteer carers to a high level in dementia-related evidence based medicine. We will gather preliminary data about whether this makes a difference to NHS-engagement. The first, innovative part of the proposal is to recruit people to do a small, well-defined task: reading trial reports, extracting some basic data about the studies, and entering it onto the website of our free-access study-based register. Once the interest of the carer has been captured, he/she is invited to work through a series of modules about EBM which have been adapted or created using examples which are all directly related to dementia. Proposed NHS engagement and product dissemination model We propose engaging NHS staff who are concerned with organising and delivery of dementia services indirectly: via carers. Our primary product is thus educated, evidence-engaged, carers of whom we aim to produce 40-80 in the first year. Our secondary products are training materials. These fall into two categories: those supporting the function of the web-based study-based trials register ALOIS; and those supporting dementia-specific EBM education. There is no shortage of relevant materials freely available on the web, or available through the Centre for Evidence Based Medicine. However, we need to adapt them so that they use examples from dementia so as to maximise their relevance to carers. We also need to convert materials into the most readily accessible format. We anticipate this include prominent use of ‘slidecast’ (talking over powerpoint) and video materials. Open Access is the guiding principal of Cochrane and also of ALOIS. Volunteers and carers arrive at different points on the internet. We therefore intend to license the materials we produce at no, or minimal cost, to as many other relevant organisations referred to above as are interested and able to host them, so that they can be situated on other sites. A condition would be that their usage will be monitored for a year to determine their utilisation. We anticipate that some of the materials will be available through YouTube. We anticipate that, as a secondary consequence, these materials will be useful for NHS staff who may then be drawn to engage with Cochrane through their experience of the high quality training material. Project plan (including methodology and how the award would be used e.g. employment of new researchers etc): DEVELOPMENT OF TRAINING MATERIALS: ALOIS Feb-April: we have a current programme of enhancements to the ALOIS site. If this application were to be successful, we propose to develop the site further so that it contains materials for training all collaborators in ALOIS (be they carers or others). This will include a video which introduces ALOIS, and a web-based powerpoint presentation with voiceover which provides a step-by-step ‘How to contribute to ALOIS’. Other resources for creating an ALOIS community, such as workflow scheduling for collaborating participants. In this phase, and throughout the project, materials will be reviewed by Htay, McGrath and members of the Cochrane Consumer Network to ensure accessibility. RECRUITMENT OF CARERS 1. Community Mental Health Team The strategy will play to a key strength of the NHS provision of services for people with dementia: the Community Mental Health Team. These usually consist of a consultant and a small team of 3-7 workers (community psychiatric nurses, memory clinic nurses, psychologists, occupational therapists). There are approximately 600 such teams, most of which have a weekly meeting to discuss patients and management issues. We will ask every Older Adults Community Mental Health Team in the country to approach a single carer who might be able to help with our ALOIS task. Our recruitment strategy will comprise two stages. First, each lead consultant will be sent a letter by snail mail, with a suggestion that the team meeting might be the place to identify a suitable carer. Second, depending on response, we will follow-up with an email making the same request, with the suggestion that it is circulated to team members. CMHTs typically have members with a range of expertise. By involving them, and asking for ‘IT-literate carers who might be able to help with this task’, we expect that at least some team members will think, ‘Actually, I would be interested to do that’ and will explore ALOIS further. (In our experience, the pressures on CMHT members are such that only online material offers an efficient way for them to develop their knowledge. They are very rarely able to come to courses and conferences.) By routing the letter through the team secretary, some of the secretaries might become interested themselves. Sometimes the letter will be routed to a key figure in the local Alzheimer’s Society. We can then engage the local Society in identifying people who might be interested. At each stage, Cochrane gains exposure and influence. 2. Newsletters and web-based discussion forums of relevant organisations: AS, Carer’s association, For Dementia, DeNDRoN, early onset dementia charities (eg Clive Project), Age Concern, U3A, Involve. 3. Volunteering websites do-it.org, volunteering.org.uk, timebank.org.uk, online-volunteering.org DEVELOPMENT OF FURTHER EBM DEMENTIA-SPECIFIC TRAINING MATERIALS The educational material will be presented through existing virtual learning environment software and produced through the University of Oxford Technology Assisted Lifelong Learning section of the Continuing Education Department whose price for development of such a course we have quoted. The training materials we develop will be focussed on the following 1. Cochrane dementia group 2. Systematic reviews of RCTs 3. ALOIS 4. Small studies, bias, selective publication, 5. Conducting clinical trials 6. Diagnostic test accuracy reviews 7. Health economics and NICE 8. How else can I get involved? Relevant examples from dementia studies will be used throughout. Material will be divided into short, interruptible, stand-alone sections, with questions at the end of each section to help maintain motivation. The majority of material will be presented as slidecast (voice over powerpoint) or video clips. Preliminary discussions suggest that it will have a maximum of 10 hours of material. It is likely that we will also present a ‘short’ option of 1-2 hours. Navigation will be structured so that participants who have completed the ‘short’ option can skip through to more detailed presentations in order to then take on the more detailed longer option. FOCUS GROUP We will convene a small group of carers (N~6) who typify the target audience. This will meet twice: once at the beginning of the project to review recommendations of the Advisory Group concerning the exact scope and duration of the material, and once mid way through to review the materials developed. TIMETABLE From early June: If our application is successful, we will, once the website has had the anticipated alterations completed, publicise ALOIS through multiple outlets, including the secondary care routes we establish for recruitment to ALOIS, through carers events, relevant conferences, April to late July: Development of new carer-education materials. Test driving it through our focus group of carers August to March 2011: encouraging participants in ALOIS to work through the more detailed EBM material. February 2011: A conference will be held in Oxford to consolidate the group of ALOIS participants, create community, present further opportunities for NHS engagement and get more feedback on recruitment and materials. ENGAGEMENT WITH CHARITIES For Dementia, the second largest carer support group, with a significant virtual network of carers, has a training branch and creates learning and teaching partnerships. Its Chief Executive Barbara Stephens has kindly agreed to advise us as a co-applicant. We have discussed the project with Andrew Proctor, Head of Knowledge for the Alzheimer’s Society. He is clear that what we are proposing is complementary to, and does not overlap with what the Society does. Unfortunately, he did not feel the Society could be an applicant because ‘I felt the Society was not in a strong position with these NIHR Cochrane-NHS Engagement awards are we are not an NHS organisation’. He did however say that we may be able to publicise our project through the widely read Alzheimer’s Society newsletter and the web discussion forum. What we are proposing potentially falls between the AS Research and Knowledge divisions, and we will be continuing our dialogue with the Society, who have a dedicated Cochrane funding stream. THE TEAM The applicants have skills and links which mean that they are particularly well placed to deliver recruitment, training materials, engagement and support through the training programme for carers, dissemination, and support for engagement in the wider NHS. McShane is a Consultant in Old Age Psychiatry who developed the use of carers in role plays to educate doctors about how best to broach the subject of recruitment into dementia trials. As Clinical Lead for Thames Valley Dementias and Neurodegenerative Diseases (DeNDRoN) Local Research Network, he has promoted the use of direct-to-consumer advertising of clinical trials, finding ways to encourage carers to ask their clinicians about opportunities for engagement in clinical trials. As Director of Postgraduate Programmes for the Centre for Evidence Based Medicine at the University of Oxford, Burls has unparalleled experience in the adaptation of materials for online use. However, she also brings great experience of training volunteers and carers: she is a trainer for and member of the Cochrane Consumer Network and is a founder member of the International Network for Knowledge about Wellbeing (ThinkWell), which is exploring how the internet can be used to put the public at the heart of research Htay is a current carer for a patient with dementia, is a longstanding author, supporter and consumer referee of Cochrane dementia reviews. He is currently studying for an MSc and is an example of the sort of carer we would be aiming to recruit. McGrath is responsible for Patient and Public Involvement for DeNDRoN. He therefore has access to, and knowledge of the requirements of, a group of carers with particular interest in dementia. Duncan Saunders was formerly responsible for the Oxfordshire branch of the Alzheimer’s Society. Having moved across to a commissioning role in Oxfordshire PCT, he is well placed to understand the role of dementia advisors envisaged in the National Dementia Strategy, and to ensure that the education received by our cadre of expert carers is relevant to the needs of commissioners. Stott leads the Health Care of the Older People field. As such, he has access to advice from a broader range of non-dementia focussed older people who can provide feedback on the material we develop. Stephens is Chief Executive of the charity For Dementia and therefore already has considerable experience of delivering training packages to carers of people with dementia over the internet. EVALUATION We will evaluate the proposed strategy at three levels: 1. How successful are we at engaging carers with ALOIS? a. Numbers against our target of 40-80 b. Duration of help c. Number of records extracted d. Completion of questionnaire at study entry, including: i. Are you involved with any NHS organisations? please describe ii. Do you do any other volunteering? iii. What is your background? (Educational/occupational iv. What is your motivation? v. Are you retired / working? vi. If you have a relative with dementia, are you currently involved with their care? vii. Do they live at home with you or are they in care? viii. Involvement in primary research studies e. This questionnaire will be repeated one and two years after completion of first questionnaire f. Exit questionnaire asking for feedback on ways in which ALOIS could be improved 2. What is the usage of the web-based education package? a. Numbers b. Registration form will include questions as above c. How far do they get through the course? d. Exit questionnaire asking for feedback on ways in which course could be improved 3. How many of those who are engaged with these products are, or become engaged with the NHS in other fora? a. Through questionnaire as detailed above We will also conduct structured qualitative telephone interviews with 10 participants to access richer opinions. This will be informed by theme saturation methods, but will not be formal. We will be interested in what they feel they may have gained from it and how their future actions may have changed as a result of the project and what their follow on involved in EBM has been/will be. If we attract a very large numbers of applicants to be involved in ALOIS such as might occur if we were able to secure adoption for the study through DeNDRoN – we will randomly assign potential ALOISers to getting educated now, or later. This delayed start design, coupled with simple questionnaire outcome measures will allow us to establish whether the intervention gave rise to any difference in involvement in primary research, or in oher NHS fora. We will be able evaluate beyond the period of the grant, at no cost, for whether it becomes self-sustaining in terms of volunteer involvement and uptake of the web-based learning. If it does not, but it looks as if there have been NHS engagement spinoffs, then we will make further grant applications, probably to the Alzheimer’s Society.


Our aim is to educate and inform expert carers in the evidence pertaining to dementia so that they can more effectively advocate within a variety of NHS contexts.