Barbara Hodkinson, Founder and Coordinator, The Butterfly Scheme
As carer for my mother, who had dementia, I created the Butterfly Scheme after analysing a diary I’d kept when a planned hospital stay of five to seven days stretched to 22 days entirely because of inappropriate but well-meaning dementia care. It became clear that all staff who met patients needed five basic dementia interaction skills, plus an awareness of who had dementia.
Integral to the scheme is partnership working, including the sharing of relevant carer input with staff in an easy-access format. Hundreds of carers and people in early-stage dementia were consulted to ensure that the scheme met the most pressing dementia care needs.
Using 15 years of teaching experience, I planned the scheme in 2004 and then spent two years consulting people in the early stages of dementia and hundreds of carers of people with moderate and more advanced dementia, whilst liaising with a senior nurse at my local hospital and a practice development manager at another trust in order to ensure the evolving scheme would work in hospitals.
I then accepted invitations to speak at conferences and events until eventually the scheme was piloted at Harrogate and District NHS Foundation Trust. From there, other hospitals heard about the success of that pilot and applied to follow suit; the scheme is fully copyrighted and hospitals have a duty to apply it in accordance with the standards expected by the scheme, which in fact they very much want to do.
This is an opt-in scheme offering appropriate care for people with dementia whilst they are in hospital. It is based on easy-to-learn, quickly-delivered skills-based education for all staff who come into contact with patients.
Aim: to improve the safety and well-being of people with dementia during time spent in hospital, reducing their stress levels.
Evaluative measure: the opt-in rate to the scheme runs at or near 100 per cent, showing that carers and people with dementia find this a valuable support.
Aim: to support hospital staff caring for people with dementia, reducing their stress levels and increasing job satisfaction.
Evaluative measure: the scheme is spreading fast, very often because staff at one hospital recommend it to another, indicating that staff enjoy using their skills and the system.
Aim: to minimise length of stay for patients with dementia by avoiding unnecessary extension of that stay through inappropriate dementia care.
Evaluative measure: positive anecdotal evidence only at this stage, but full evaluations now taking place.
The Department of Health has now, via the 2013-14 IESD fund, given a grant to the Butterfly Scheme to create a UK-wide evaluative system enabling precise pinpointing of wards, teams and skills deserving of specific recognition for their achievement or requiring targeted input.
What did you do?
I have developed a range of materials which provide a complete package for delivery in hospitals (guides to implementation and for planning the perfect launch event, patient and carer guides, role-specific expansion packs, champions’ and even media information – and a lot more besides, all templated for in-house printing) and, accompanied by a trained carer-speaker from the team, I also give multiple presentations on launch days so that hundreds of staff can have the opportunity of attending.
A full workshop is given for the Butterfly Scheme / dementia champions on launch day, but all staff who meet patients need dementia care skills, so staff from all hospital teams attend one of the 45-minute drop-in presentations which are repeated throughout launch days; the role-specific expansion of the scheme’s five-point targeted skills-based response is provided as a follow-up, in a format which can be used in-house at no extra cost.
Specific skills taught and promoted by the scheme, summed up by its “REACH response”, include: approaching scheme members in a dementia-friendly way so as to make a real connection and remove stress; avoiding provoking so-called “aggressive incidents” by interacting appropriately; taking simple steps to maintain a practical and reassuring bedside area for someone with memory impairment; supporting these patients’ hygiene and hydration through insight and appropriate approaches; applying an inbuilt system for reliably obtaining and delivering key information from and to people with cognitive impairment, whilst including them courteously in those processes.
Hospitals typically report that the staff attitude towards dementia care rapidly transforms into a very positive one. The scheme believes that hospital staff want to care well but have traditionally not been supported in that care, and the effect of the scheme’s education package confirms that. Staff from all disciplines now talk to the patients more and are able to make a connection far better. Behaviours are better understood and continence and skills are maintained more successfully.
Carers also report feeling less stressed, as they feel staff now support patients with dementia in an appropriate way. They very much appreciate being able to share insights into a patient’s care within a system that reliably ensures that that information is accessed and used.
There is a reduction in so-called incidents of aggression because staff are now able to approach patients in a dementia-friendly way, reducing fear and shock. Staff also demonstrate increased enthusiasm for dementia care via increased post-launch uptake of further educational opportunities, many of which have previously had poor uptake; the Butterfly Scheme skills form a base-layer – a foundation for further educational input where required.
A simple addition to the scheme has allowed those with confusion, but no dementia diagnosis, to be offered the same targeted response, without any risk of a permanent diagnosis being recorded. This enhances delirium awareness and also promotes referral to memory services in cases where undiagnosed dementia is suspected. It is crucial that the Butterfly symbol retains its clarity as a means of requesting a clear, skilled response to the person with dementia, but the additional system allows all people with cognitive impairment to be approached appropriately whilst retaining absolute clarity within the records.
Leads at member hospitals are keen to collaborate with the scheme in order to share hints and tips to enhance the scheme’s work; this collaboration offers member hospitals the chance to benefit from the experience of others and to share their own successes.
Advice for others
The Department of Health gave a grant to allow Dementia UK to co-train a team of volunteer carer-speakers for the Butterfly Scheme, so that there is a network of speakers around the country, supporting deliverability. The scheme is backed by a CIC to provide financial sustainability.
Through regional collaborative groups, leads at each hospital continue to meet with the Butterfly Scheme leader and fellow leads on a regular basis, receiving further input first-hand and feeding back successes and any suggestions for further enhancements.
The scheme continues to feed in additional support and materials on an ongoing basis. Once the initial five-point response is embedded, it becomes easy to layer further input on top of that because staff now have a positive attitude towards learning more about dementia care and they know any input from the scheme itself will be practical.
The scheme has rapidly spread around England, Wales, Scotland and Northern Ireland. It is a fully-copyrighted scheme, which can only be used when fully supported by ongoing involvement from its coordinator, ensuring high-quality delivery.
In the National Dementia Audit report, the Butterfly Scheme is one of only six recommendations to Dementia Leads and is the only system cited in those recommendations, combining identification with care response.
See other examples at Dementia - best practice examples.