Rules of Thumb

Improving end of life care for people with Dementia

Greater Manchester and Eastern Cheshire Strategic Clinical Networks have facilitated the development and delivery of an educational programme, that aims to address the palliative and end of life care needs for people with dementia.

There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. Despite this, dementia is still not universally recognised as life limiting and when people are in the dying phase. Fifty eight percent of people with dementia will die in the care home setting and 29% will die in hospital (Public Health England, 2019). Dying with dementia brings unique challenges that can be difficult to manage without appropriate training for those professionals providing end of life care.

In the lead up to this work, Dementia United were working with Springhill Hospice and St Ann’s Hospice to develop a bespoke end of life training package for people with dementia, based on the Rules of Thumb. The Rules of Thumb* are a framework for practitioners providing end of life care for someone with dementia. The rules cover: eating and swallowing difficulties; agitation and restlessness; reviewing treatment and interventions at the end of life; and providing routine care at the end of life. Each ‘rule of thumb’ consists of a flow chart, taking the practitioner through the decision-making process, and a list of points to consider.

The three partners were looking for a way to mobilise this programme into practice, and so the next phase of the programme development was a collaboration between Dementia United and Greater Manchester and Eastern Cheshire Strategic Clinical Networks, and the remit for piloting and delivering the programme then moved to the Palliative and End of Life Care team in April 2021.

The aim of the project was to enhance the delivery of palliative and end of life care to people living with dementia in Greater Manchester and Eastern Cheshire to improve their experience, and that of their families. It needed to offer a flexible way to address some of the aspects of care that professionals come across when working with people with dementia at the end of life.

Dying with dementia brings unique challenges that can be difficult to manage without appropriate training for those professionals that are providing end of life care. So, the purpose of the programme development was to transform the Rules of Thumb guide into a deliverable education programme to provide facilitators with a set of resources that would be flexible enough to adapt to a wide range of delegates. A key part to the programme was to ensure a multi-disciplinary approach including multi-disciplinary team education and that promotes collaborative working with care homes.

The first step was to design an interactive package and host it somewhere accessible. The Palliative and End of Life Team already have a well-established educational programme with care homes in the Six Steps programme with its own website (www.sixsteps.net) and the new Rules of Thumb programme fully complements this programme (www.sixsteps.net/rules-of-thumb/). All programme resources are provided free of charge within a user friendly, interactive approach on the website. For example, there is a detailed facilitator guide to support the programme delivery, PowerPoint presentations for each of the mini-sessions, case studies, activity sheets for group work and a whole host of other resources.

The next step was to pilot the programme, with several localities across Greater Manchester and Eastern Cheshire taking part. As the Rule of Thumb is designed to deliver flexibly, localities delivered the programme to allow local variations to be addressed, while still incorporating the principles of the Rules of Thumb guide. The programme can be delivered as stand-alone sessions or broken down and delivered in smaller learning chunks. It can also be incorporated into existing education programmes.

Following the pilot phase, evaluations and reflections were drawn together from both delegates and facilitators and considered the parts of the programme that worked well, and things that didn’t. This resulted in modifications being made to the programme to address anything that had not been beneficial to the programme and to enhance the things that were.

From the evaluations gathered during the pilot phase, they demonstrated an increase of 26% in delegate’s knowledge, 27% in skills and 30% in confidence. Delegates conveyed a high level of satisfaction in relation to the sessions’ content and the educators’ presentation, with a likelihood of 8.8 (out of 10) that they would recommend the session to a friend or other person. Ninety-three per cent of delegates are likely to make a change to their future actions and behaviours due to attending the course, with 85% rating the likelihood as most likely or highly likely.

The qualitative feedback from delegates included comments such as…

“I feel the session was very informative, i also feel it is good to be working with the Hospice, it offers that peer support”

“The assessment process and being able to prioritise a person’s needs. The discussion and talking about this with others reinforces how important it is to work together with others and families to ensure best care”

“Well presented. Completely relevant information. Interesting course, well delivered”

Do you want to read more? The full project report can be found at Rules of Thumb Final Report (peolc.net)

How do we ensure that Dementia Awareness week continues to focus on the needs of people with dementia after the end of the week? Are you an educator/ facilitator/ Admiral nurse working with people with palliative care needs and/or with dementia? What is happening in your area to support people with dementia as they approach the end of life? Can you support the learning of others using this programme? Are there any other initiatives in your area that it could be linked into? Is there a local group/ team who could help drive this forward?

Do you want to be involved in the programme? Contact gillian.bailey3@nhs.net  for more information

*The Rules of Thumb were developed by University College London (UCL) and King’s College London, funded by the terminal illness charity Marie Curie and the Alzheimer’s Society

Gill Bailey

GMEC SCN Palliative and End of Life Team