Introduction to the Rules of Thumb
This programme has been based on the Rules of Thumb, a guide for end of life care for people with dementia
The programme aims 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 very end-of-life.
The programme can be delivered in a single session as an extended half day session, across several mini-sessions or it may be incorporated into other programmes, such as the Six Steps programme. All resources are provided for the programme and can be found below. There is a facilitator guide to support the delivery, a PowerPoint presentation for each mini-session, activity sheets for group work. A range of additional resources have been included to enhance the delivery or to enable facilitators to extend the mini-sessions, although the use of these is optional and will depend on the audience.
It is suggested that facilitators firstly download or view the facilitators guide which provides a comprehensive overview of the programme.
Key programme resources
Pre-session information
The pre-session information (a few PowerPoint slides) can be used at the beginning of a longer session or at the beginning of each mini-session as a reminder for delegates. Download:
Rules-of-Thumb-PRE-SESSION.pptx
The Rules of Thumb guide
The full Rules of Thumb guide, created as part of a research project funded by Marie Curie and Alzheimer’s Society, led by Dr Nathan Davies and Prof Steve Illiffe. Originally developed in 2016, this guide was updated in 2020 Download:
Rules-of-Thumb-2020.pdf
Facilitators guide
The full guide for facilitators. This includes mini-session plans, PowerPoint slide descriptions, information about the case study and all session activities Download:
Facilitators-Guide.pdf
PowerPoint presentation
The complete PowerPoint presentation for all mini-sessions can be found here. Alternatively, the PowerPoint presentation has been broken down into the smaller mini-sessions and can be found under each of the Rules below. Download:
Rules-of-Thumb-FULL.pptx
Peter - a case study
The case study runs through the whole programme. This is the complete case study. Download:
Peter-full-case-study.docx
Caring for someone with dementia towards the end of life
Information for healthcare professionals (Marie Curie) please note that there is also information available for the public. Click here to visit webpage
Evaluation
There are two options for evaluations. For any pilot course/sessions, we would really like to gather feedback from delegates and also invite them to take part in a short telephone interview. Would you ask delegates to complete this Microsoft Forms evaluation? If the programme/session is being delivered in person, you can give the delegates the link to use on their phone, either before or after the session. It will be collated centrally, but we also ask delegates for the name of the course/session facilitator and will share any of your delegates feedback back with you.
The link for the Forms evaluation is https://forms.office.com/r/ceiVkCZ26V
There is also a traditional style evaluation form that can be used either following a mini-session or all sessions if delivered as an extended half day Download: Rules-of-Thumb-evaluation-form.docx
Certificate of attendance
A certificate of attendance that can be used for mini-sessions or the whole programme. Download:
Certificate-of-attendance.docx
Supporting resources for the sessions
PowerPoint presentation
The PowerPoint presentation for the introduction session. Download:
Rules-of-Thumb-INTRODUCTION.pptx
Proactive Identification Guidance
This guidance supports discussion around the progression of dementia towards the very end of life (The Gold Standards Framework) Download:
Proactive Identification Guidance v2022
Supportive and Palliative Care Indicators Tool (SPICT™)
Another tool to support discussion to help identify people whose health is deteriorating (The University of Edinburgh/NHS Scotland) Download:
SPICT-April-2019.pdf
Activity sheet 1 - Advance Care Planning
Blank activity sheet around Advance Care Planning exercise Download:
Activity-sheet-1-Advance-Ca-re-Planning.docx
Activity sheet 1 - Advance Care Planning (WITH RESPONSES)
Activity sheet with completed responses Download:
Activity-sheet-1-Advance-Ca-re-Planning-WITH-RESPONSES.docx
Lets talk about death shall we
A quick summary of talking with people and families about death (NHS Pennine Care and DEEP, 2020) Download:
End-of-life-leaflet-DEEP-NHS-Pennine.pdf
Click here to view document on website
PowerPoint presentation
The PowerPoint presentation for the Rule One session. Download:
Rules-of-Thumb-RULE-ONE.pptx
Crowd noise
An example of noise that can be used with activity. The track can be downloaded and used free of charge Download as an MP3:
18684__pushtobreak__family-crowds-pt-1-dry.mp3
Download through the website (registration needed) Click here to visit website
End of life care for people with dementia
A project report that assessed end of life care for people with dementia in a London Borough based on discussions with professional, people with dementia and their carers Download:
End-of-Life-Care-for-People-with-Dementia.pdf
PowerPoint presentation
The PowerPoint presentation for the Rule Two session. Download:
Rules-of-Thumb-RULE-TWO.pptx
Activity sheet 2a - Underlying causes
An activity that encourages delegates to think of underlying causes to challenging or difficult to understand behaviour/s. Download:
Activity-sheet-2a-Underlying-causes.docx
Activity sheet 2a - Underlying causes (WITH RESPONSES)
The activity sheet with suggested responses added Download:
Activity-sheet-2a-Underlying-causes-WITH-RESPONSES.docx
Cure the care system
A short film (2 minutes) that powerfully depicts the impact on carers Click here to view film
Age UK checklist for carers
A checklist that supports carers to identify the support and information they need. This is used to carry out activity 2. Download:
Age-UK-carers-checklist.pdf
Activity sheet 2b - Carers checklist
An activity that asks delegates to think about what carers need when caring for someone at the end of life Download:
Activity-sheet-2b-Carers-checklist.docx
Activity sheet 2b - Carers checklist (WITH RESPONSES)
The activity sheet with suggested responses added Download:
Activity-sheet-2b-Carers-checklist-WITH-RESPONSES.docx
PowerPoint presentation
The PowerPoint presentation for the Rule Three session. Download:
Rules-of-Thumb-RULE-THREE.pptx
Activity sheet 3 - Benefits/risks/burdens
An activity based on Peter to consider the benefits, risks and burdens of taking a medication at the end of life Download:
Activity-sheet-3-Benefits-risks-and-burdens.docx
Activity sheet 3 - Benefits/risks/burdens (WITH RESPONSES)
The activity sheet with suggested responses added Download:
Acitivty-sheet-3-Benefits-risks-and-burden-WITH-RESPONSES.docx
PowerPoint presentation
The PowerPoint presentation for the Rule Four session. Download:
Rules-of-Thumb-RULE-FOUR.pptx
IPOS-Dem
The IPOS-Dem is a proxy-completed measure for use with people with advanced dementia living in care homes, developed at the Cicely Saunders Institute. It is derived from the Integrated Palliative care Outcome Scale, and has been developed for use by care home staff to improve assessment and monitoring of symptoms and other concerns, as well as for research Download:
IPOS-Dem-V2.2-Staff.pdf
PowerPoint presentation
The PowerPoint presentation for the Conclusion session. Download:
Rules-of-Thumb-CONCLUSION.pptx
A family member speaking about bereavement
Emma Scattergood: My bereavement journey. Emma speaks about her experience of bereavement of her Mother Nancy who died after living with mixed dementia for 6 years. Read the attached article. Download:
My-bereavement-journey.docx
Activity sheet 5 - Reflection and personal action plan
This activity asks delegates to reflect on the programme and to consider how they can identity and further skills to support their personal and professional practice Download:
Activity-sheet-5-Action-Plan.docx
Additional resources
Defining end of life in dementia: A systematic review (Browne et al, 2021)
A recent systematic review that aims to identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia Download:
Browne-et-al-2021-Defining-eol-in-dementia-a-systematic-review.pdf
End of Life Care
This webpage explains what happens when someone in the later stages of dementia is nearing the end of life, and when they die (Alzheimer’s Society) Click here to visit website
Understanding dying
Understanding the changes that happen when someone is reaching the last days of their life (Dementia UK, 2019) Download:
Understanding-dying-Dementia-UK-2019.pdf
My future wishes
Advance Care Planning (ACP) for people with dementia in all care settings (NHS England, tide, Alzheimer’s Society, 2018) Download:
my-future-wishes-advance-care-planning-for-people-with-dementia-2018.pdf
I didn't want that
A short film (6 mins, 35 secs), which highlights the importance and promotes discussion about making end of life wishes (Dying Matters) Click here to view film
What’s best for Lily? – End of Life Care in a Care Home
A free suite of end of life care resources aimed at care home staff. It includes an 11 minute educational film and an accompanying lesson planning guide Click here to visit website
Eating and drinking - Information for family and friends as dementia progresses towards the end of life
This booklet has been designed for family or friends providing support for someone living with dementia who is experiencing difficulties with eating and drinking in the later stages Download:
Eating-and-Drinking-FINAL.pdf
How do people living with dementia perceive eating and drinking difficulties? A qualitative study (Anantapong, 2021)
A study to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance (UCL and Marie Curie) Download:
Anantapong-et-al-2021-How-do-people-living-with-dementia-preceive-eating-and-drinking-difficulties.pdf
Red plate/white plate
An additional activity that can be used to demonstrate the impact of dementia on eating Download:
Slide-Red-plates.pptx
Talking about dementia and dying - A discussion tool for residential aged care facility staff
This discussion tool deals with the issue of dying from dementia in a residential aged care facility. It is a resource to help people working in facilities to openly communicate with people with dementia and their families and friends about death and dying. Talking about dying is often difficult and this tool provides guidance for those who would like to improve their skills (The Australian Government Department of Health and Ageing) Download:
Talking-about-dementia-and-dying.pdf
The bubble machine
Air with Flavour® AIR allows persons who are unable to eat and drink normally the ability to taste again. Click here to visit webpage
Aggressive behaviour from people with dementia
An excellent webpage that considers different aspects in relation to aggressive behaviour (Social Care Institute for Excellence) Click here to visit webpage
End of Life Care in Frailty: Dementia
The aim of this guidance series is to support clinicians and others to consider the needs of frail older people as they move towards the end of their lives and help them to provide high quality care. Has a very good section on ‘Distress in dementia’ (British Geriatrics Society, 2020) Click here to visit webpage
Through the eyes of dementia
A short film (10 mins 04 secs) showing a carer’s story (Manchester Health and Care Commissioning/Dementia United) Click here to view film
A decision aid to support family carers of people living with dementia towards the end of life (Davies et al, 2021)
An evidence‐ and theoretical‐based process for developing a decision aid to support family carers of people with dementia towards the end‐of‐life. Download:
Davies-et-al-2021-A-decision-aid-to-support-family-carers-of-people-living-withdementia-towards-the-endoflife.pdf
Supporting people with dementia to have a good death
A short film (11 mins 10 secs) looking at how we best support people with dementia to have a good death or to die as they would wish (Social Care Institute for Excellence, SCIE) Click here to view film
Treatment and care towards the end of life guidance
A framework to support meeting the needs of patients as they come towards the end of their life. There is a really useful section on assessing the overall benefits of treatment (General Medical Council) Click here to visit guidance
Recommended Summary Plan for Emergency Care and Treatment ReSPECT
Resuscitation Council UK has created a range of resources for those involved in decision making Click here to visit the website
Treatment Escalation Plan (TEP)
A sample TEP that highlights acute deterioration management (NHS Greater Glasgow and Clyde) Download:
Sample-TEP.pdf
How to create an advance decision document
Why make an Advance Decision? This page focuses on the value of an advance decision for people with dementia (My Living Will) Click here to visit webpage
Structured medication reviews and medicines optimisation: guidance
Guidance for structured medication reviews (NHS) Download:
Structured-medication-reviews-and-medicines-optimisation-Sept-2020.pdf
Animation to illustrate the Enhanced Health in Care Homes programme
A short animation (4 mins 30 secs) that shows how Health and social care professionals, including care home staff, work together in a multidisciplinary team to provide care to residents( NHS England) Click here to view animation
The Framework for Enhanced Health in Care Homes
The full EHCH framework March 2020 (NHS England and NHS Improvement) Download:
The-framework-for-enhanced-health-in-care-homes-v2.0.pdf
Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia (Ellis-Smith et al, 2016)
An examination of the content validity, acceptability and comprehension of the Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings Download:
Ellis-Smith-et-al-2016-Development-of-IPOS-Dem.pdf
Webinar - A Measure to Assess Symptoms and Concerns in Advanced Dementia
A webinar and presentation slides to 1) understand some of the challenges related to outcome measurement in advanced dementia and 2) to consider an example of an holistic, person-centred assessment and outcome measure, IPOS-Dem, and how it meets some of these challenges Click here to visit webpage
What you can do to practically care for someone who is in their last days and hours of life
This is not a specific guidance in relation to a person with dementia, but includes some key aspects in a easy to follow two page leaflet (NHS, 2020) Download:
Practical-Care-For-Dying-Person-Toolkit.pdf
Bereavement, loss and dementia
A booklet to hand out for supporting people with dementia and those close to them through the grieving process (Cruse Bereavement Care, 2018) Download:
Bereavement-loss-and-dementia-Cruse-2018.pdf
End of Life Care and Post Bereavement Support - Shifting the Conversation from Difficult to Important
Sharing the perspectives of people living with dementia and their carers (tide and DEEP) Download:
End-of-Life-Care-Post-Bereavement-Support-Shifting-the-Conversation-from-Difficult-to-Important.pdf
Re-framing Conversations around End of Life
A film (12 mins 15 secs) linked to the resource above with people with dementia and carers of people with dementia speaking about discussing death and dying (tide and DEEP) Click here to view film
Together in dementia everyday
A video (14 mins 14 secs) of Natasha, daughter of a woman who has dementia, speaking about the impact that her Mother’s condition has had on her and her family (tide) Click here to view film
Video Q&A (4 mins 11 secs) with an Admiral Nurse: Bereavement and memory loss
An Admiral Nurse talks about the impact of bereavement and memory loss (Dementia UK) Click here to view film
GM syllabus for EOLC and those with dementia
Resources supporting training (Greater Manchester Combined Authority) Download:
GM-Syllabus-for-training-on-EOLC-of-those-with-dementia-v1.pdf