Article Text
Abstract
The EVOLVE project was set up following a high number of referrals of patients with the dual diagnosis of MND and frontotemporal dementia. It was found that existing services did not adequately meet their needs. The EVOLVE project was made possible through funding from St James Place Charitable Foundation managed by Hospice UK to provide rehabilitative palliative care over a period of 18 months.
The project aimed to recruit and train volunteers, with a background in healthcare, to support patients with complex needs. Specially trained volunteers supported patients with a dual diagnosis of a neurological condition and cognitive change to work towards their own goals during regular home visits. At the same time these visits would provide respite for carers who were encouraged to use this time to attend to their own priorities.
Preliminary findings have shown that the calibre of volunteers recruited for the project has been very high with a high level of experience in caring. This has provided former carers with a volunteering role which they have enjoyed carrying out. Goal setting with patients proved difficult due to the cognitive changes patients experience, however, meaningful relationships were built up and social advantages were seen as significant. Carers seem to have benefitted most from this project through having an additional source of support, dedicated to their loved one’s specific needs, who provided practical and emotional support. This project has enhanced client-centred care as the volunteers provided an additional support network to the patient and their carer and were able to bridge the gap between healthcare services and families. Carers of those with neurological conditions benefitted from having a dedicated person who understands the changing needs of their loved one and can provide them with some respite from caring responsibilities. Recommendations from the final report, available from August 2018, will be included in the poster.