A number of local, national and international initiatives call for the development of hospice services for people living and dying with dementia, including the provision of appropriate training: The National Council for Palliative Care (2009); the Prime Minister’s Challenge on dementia (2009); the European Association of Palliative Care (EAPC’s) white paper on dementia (2013); and Hospice UK (2015).
The Centre for Applied Dementia Studies and the Academic Unit of Palliative Care at St Gemma’s Hospice in Leeds have recently delivered two cohorts of peer facilitator training to 20 staff from 12 hospices in Yorkshire and Humberside. The training, funded by Health Education Yorkshire and the Humber, focused on how to support people living with dementia across hospice settings. Those attending the course learned how to deliver three modules to their colleagues: Foundations in Person-Centred Dementia Care; Enhanced Communication; and End of Life Care for people living with dementia. This ‘Train the Trainer’ model creates a sustainable way of disseminating training to an extensive workforce, as well as developing champions to act as leaders in practice development.
On Monday 1st October, St Gemma’s Hospice hosted a Community of Practice day for all of the hospice staff who had attended the training. A total of 11 facilitators attended, representing six hospices. We were privileged to have two additional special guests, Wendy Mitchell and Professor Murna Downs.
The day started with reflections from Murna about end of life care for people living with dementia. Murna spoke about the commitment of Health Education England to improve education for health and social care staff supporting people living and dying with dementia. She passionately spoke about the need to see the whole person, reflecting on whether what hospices offer is specialist palliative care or simply humanistic care.
A key take home message from Murna was that we shouldn’t just be investing in end of life care when death is imminent but exploring people’s wishes and needs from a much earlier stage.
Next, each of the participants presented how the training was working in their hospices. Whilst some challenges of time and resources were quoted by a number of participants, there were many reflections on the positive impact of the training on care practices and awareness of dementia. In total, approximately 350 hospice staff have been trained by the people who attended the Community of Practice day.
After lunch, Wendy gave a wonderful talk about her experience of living with dementia. Wendy is always so generous with her contributions and had a really significant impact on everyone in the room, many of whom quoted Wendy when reflecting on their take home messages from the day. Wendy’s reflections on the day can be found on her blog post here:
Murna ended the day with a summary of what had been covered. Here are Murna’s reflections on the day:
- Between us we can and are making a big impact on the well-being of people living with dementia who access hospice care
- The most effective approach to training is facilitation as reflective practice is at the heart of person-centred care
- The training is the start of the change process – a route to introducing and supporting the implementation of change
- Through the training, hospices have developed a shared language, shared concepts and shared goals
- In order to successfully implement training, facilitators need: time to prepare; a buddy to talk things over with; a suitable training environment; for the training to be mandatory; for the training to fit with the strategic plan of the hospice and have organisational support
- The most successful training sessions were those where a variety of staff roles were represented e.g. nursing, medics, housekeeping and catering
Some of the additional reflections from attendees included:
“A lot of what Wendy said, the mats at the door, we used to have those black mats. My Mum was in the hospice and she used to shout at people ‘don’t stand on that’. Until Wendy said that I never knew what the distress was.”
“For me it’s really helpful to reassure us we’re doing things on the right lines, it’s nice to see that we’re not doing things wrong.”
“Having a group to bounce ideas off, to say what each other’s doing is great. ”
It was wonderful hearing from Murna, Wendy and all of the facilitators during the day and acknowledging that the training is making a positive difference to people living with dementia who access hospice services.
Our next steps will be to promote ongoing connections between the different hospices who are delivering the training as well as to look at spreading this good practice to other areas of the UK. If you would like to learn more detail about this training, please contact Lindsey at firstname.lastname@example.org
Written by Lindsey Collins with contributions from Clare Mason and Murna Downs. Thanks also to Wendy Mitchell, Jane Chatterjee and all the hospice training facilitators for their contribution to the day and the project as a whole.
- National Council for Palliative Care (2009) End of life care for people with dementia. Available from: http://www.ncpc.org.uk/sites/default/files/Dementia_2009_Project.pdf
- Department of Health (2009) Living well with dementia: a national dementia strategy. Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf
- van der Steen JT, Radbruch L, Hertogh CMPM, de Boer ME, Hughes JC, Larkin P, Francke AL, Junger S, Gove D, Firth P, Koopmans RTCM, Volicer L (on behalf of the European Association for Palliative Care) (2013) White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine, 28 (3), 197-209. Available from: https://journals.sagepub.com/doi/full/10.1177/0269216313493685
- Hospice UK (2015) Hospice enabled dementia care: the first steps. Available from: file:///C:/Users/lcollin3/Downloads/hospice-enabled-dementia-care—the-first-steps.pdf