DementiaRoadmap

This report published by the Marie Curie Cancer Care draws on the direct experiences of people caring for someone at the end of life and on Marie Curie Cancer Care’s years of expertise of caring for carers.

Its recommendations set out how practitioners can improve the situation both for people at the end of their lives and for their carers, based on the first-hand experience of people who have been through this experience.

Download Committed to carers: Supporting carers of people at the end of life

Summary of recommendations:

• Carers of people at the end of life need to be supported to identify themselves as carers. Health and social care professionals should have conversations with carers about what a patient’s diagnosis will mean for the carer at the point of diagnosis, and be prepared to revisit these conversations as the patient’s condition progresses.
• Health and social care professionals need additional support and training to help them identify carers of people at the end of life.
• Health and social care professionals should ensure that carers are included in conversations with the patient about their condition so that they feel as though they are part of an expert care team.
• Local authorities should do more to promote the support and emergency services that they offer which are designed to prevent carer breakdown.
• When patients are placed on end of life care locality registers, their carers should be automatically be offered a carer’s assessment.
• Carers can feel guilt and anxiety about being away from the person they are caring for, particularly in the last few weeks, where carer breakdown can lead to an emergency admission to hospital. This should be considered by health and social care professionals when planning respite breaks with carers.
• Health and social care professionals should recognise that carers have varied information needs that are distinct from the people for whom they are caring.
• Where carers want more information than patients about the process of dying and death, health and social care professionals should sensitively direct them to reliable sources of additional information.
• Carers also need information about the practical support and financial benefits that are available to them. Carers should be presented with this information during an assessment of their support needs.
• Many carers are not claiming the benefits and support they are entitled to due to lack of knowledge about which benefits they are eligible for. When a patient is registered on the end of life care register, information on the range of benefits available should be provided to the carer.
• Many carers find the claims process for benefits is too slow or confusing. Applications for benefits for people at the end of their life and their carers should be dealt with as quickly as possible.
• Support from social care workers makes a huge difference to carers of people at the end of life. Carers need access to personal care for the person they are caring for quickly. Local authorities should do their best to ensure that these applications are processed as swiftly as possible. Ideally, means-testing for applications for personal care at the end of life should be removed by local authorities.
• The majority of people in the UK would like to be cared for and die at home, but it should be recognised that home death is often hard on carers. Health and social care workers should sensitively help carers understand the degree of commitment required to care for someone at home.
• Many people in the UK still die in hospital. Hospital staff should be sensitive to patient and carer wishes around treatment and pain and symptom control and respond to these quickly. Hospital staff should be prepared to initiate discussions with carers and patients about putting the patient onto the Liverpool Care Pathway, where appropriate.
• Carers of people with a terminal illness experience grief differently, sometimes before the death of the patient. Services for helping people with their bereavement should be flexible and allow carers of people with a terminal illness
  to use these services when they are needed by the carer, both before and after the death of the patient.