Learning objectives

After completing this unit, you should be able to:

  • understand the evidence base and development of the Comfort Care Booklet
  • explain the overall aims and objectives of the booklet
  • summarise the contents of the booklet
  • introduce the booklet to family carers

Welcome to Unit 1

Dr Gillian Carter describes the development of the resource and the evidence-base underpinning it:

What is the Comfort Care Booklet?

The Comfort Care Booklet is a resource that provides information for family carers on the progression of advanced dementia at the end of life, challenges which might occur, and how these may be managed.

Dr Karen Harrison Dening, Dr Catherine Buckley, and Violet Graham talk you through the Comfort Care Booklet:

The booklet is designed to be used by staff as a tool to support communication and shared decision-making about end-of-life care. It will help you to address caregivers’ expectations, understanding of comfort care, and how best to meet the needs of your residents with advanced dementia towards the end of their lives.

The Comfort Care Booklet (UK version) can be downloaded from the Resources section. If you are visiting this website from outside the UK, there may be different guidance specific to your country. More information on how you can request other versions of the Comfort Care Booklet is available in ‘About this resource’.

What information does the Comfort Care Booklet provide?

The Comfort Care Booklet is designed to support active participation in shared decision-making and conversations with family carers about their relatives’ end-of-life care. It provides key information on:

  • the trajectory of dementia and the symptoms to be expected as the disease causing the dementia progresses
  • common clinical issues experienced when working with people with advanced dementia
  • the decision-making process (and who is responsible for making decisions)
  • symptom management at the end of life (and the risks and benefits of different care options)
  • what family carers should expect when their relative is dying
  • managing grief and bereavement

By raising awareness of a palliative care approach for people with dementia, encouraging family carers to ask questions, and engaging them in decision-making, the Comfort Care Booklet aims to reduce unnecessary use of acute care services and help family carers to recognise when certain medical interventions may be inappropriate and not in a resident’s best interests.

In this video, Dr Karen Harrison Dening, Dr Silvia Gonella, and Violet Graham describe the importance of the Comfort Care Booklet, how it relates to advance care planning, and the benefits of using it with family carers

The Comfort Care Booklet is presented in 5 sections:

1. The Natural Evolution of Dementia

'The Natural Evolution of Dementia' allows you to prepare family carers for what symptoms to expect, as well as indications that the end of life is approaching. It lays the ground for family carers to understand the relationship between dementia progression, difficulty eating and drinking, poor swallow, and common complications such as chest infections and pneumonias related to aspiration. It also provides information on approaches that the healthcare team may take when encountering these issues, and what care family carers can provide when their relative is no longer able to eat and drink. Hospital admissions and CPR are discussed here to prompt family members to think about the appropriateness of these for their relative.

2. Decisions About the End of Life

'Decisions About the End of Life' considers the role of families and the role of doctors in shared decision-making, who is responsible for decision-making and what making decisions in a person’s ‘best interests’ means. The role of spirituality is discussed here in relation to providing spiritual care and decision-making at the end of life.

3. Relief of Symptoms

'Relief of Symptoms' describes common symptoms at the end of life, and the healthcare team’s approach to assessing and managing these, with a particular focus on dyspnoea/breathing difficulties, pain, agitation, and anxiety. It discusses the cessation of unnecessary medications and clinical observations, and the focus on nursing care at the end of life. Furthermore, it aims to dispel some of the misconceptions around the use of morphine at end of life, provides guidance on the role of IV fluids and feeding tubes, and addresses what it means when someone is no longer eating and drinking.

4. The Final Moments

'The Final Moments' focuses on providing guidance to family carers on what to do when their loved one is in the final days of life and what to expect when being with their relative at death.

5. After Death

The last section, 'After Death', explains the steps that follow death, including confirmation of death, preparation of their relative’s body, liaising with a funeral director, and a possible post-mortem. It also prepares family carers for grief and signposts to services for counselling and support.

Watch the video below to hear Rita provide a family carer's perspective on the Comfort Care Booklet.

How should the Comfort Care Booklet be used?

The Comfort Care Booklet is both an information resource for family carers and a tool for you to use to support conversations with them about comfort care. Before meeting with a family carer at a Family Care Conference (a meeting to discuss comfort care), introduce the family carer to the booklet and check if the resident with advanced dementia has an existing Advance Care Plan. This gives the family carer an opportunity to digest the information you have provided and to think of any questions they may have for you. Next, arrange to meet with them at a Family Care Conference to discuss the contents of the booklet and the concept of comfort care in relation to their relative with dementia. In this way, the booklet prepares the ground for the discussion and information sharing between you and the family carer(s) at the meeting.

Advice and tips on using the booklet

Dr Catherine Buckley and Violet Graham share some advice and tips on using the booklet with family carers:

What questions do family carers ask?

The Comfort Care Booklet includes a list of questions at the end of each section. These are the questions most commonly asked by family carers after reading the booklet. We recommend you take some time to consider how these questions relate to your resident with advanced dementia before you meet with their family carer(s).

The natural evolution of dementia

Can you tell me how much time they have left?

Can you tell me more about palliative care in dementia?

What do you want to know about my relative, so you can provide appropriate and quality care, now and later on?

What are the advantages and disadvantages of resuscitation in this case?

My relative has dementia but also other medical conditions. How might this affect their care at the end of life?

I would like to talk about how my relative would want to be cared for. When can I discuss this and with whom?

Decisions about the last days of life

How can I arrange to meet with the doctor?

Can you arrange for me to talk with someone from my culture, someone who may understand me better?

Is it possible for me to see someone else if I don’t get along with the nurse or doctor? How do I go about this?

Can I address questions or concerns about religion/spirituality at the end of life?

Relief of symptoms

What changes can I expect, such as worsening of symptoms or behaviour?

If equipment is needed, where will it come from and how quickly can it be obtained? (For example, wheelchair, mattress, syringe driver etc.)

Would you call in specialist services if required? (For example, palliative care, dentist, neurologist etc.)

How quickly can you get medication for when it’s needed?

Will care staff be aware of how to relieve pain relating to muscles or joints (contractures) which might happen at the end of life?

The final moments

Is it feasible for my relative to die at home?

After the death

Is it possible to record wishes regarding end-of-life care now? How and when will these wishes be reviewed?

If there is no solution for unpleasant symptoms such as pain or shortness of breath, will the doctor have other options so my relative is less aware of them? (For example, lowering the level of consciousness, or putting my relative to sleep by means of ‘palliative sedation’). Can this be discussed?

Can my relative be admitted into a hospice?

Can someone help me to communicate with other members of my family about what is happening?

What training/support is given to care staff to enable them to support my relative?

How often do you use temporary staff? Will my relative receive care in the last days and hours from someone who knows them?

How can I support my relative to make a will?

Usefulness of the question prompt lists

Dr Silvia Gonella describes how staff and family carers using the booklet have found the question prompt lists very useful:

Unit 1 Quiz

Please answer the following questions to show how much you have learned from Unit 1: