Carers: information for professionals, services and decision-makers

A number of useful discussion documents are available to improve policy and practice for carers of people at the end of life:

• What about me? Remembering the needs of carers (Marie Curie, 2010). This short leaflet is a good starting point for anyone working in health, social care or other setting who is likely to come into contact with people approaching the end of life and their carers. It provides some of the basic questions to ask yourself and person in front of you. Carers might find it a useful leaflet to give to professionals they’d like to start a conversation with. The leaflet was developed by the Marie Curie Delivering Choice Programme in South East London in consultation with carers. 

• Improving support for older people looking after someone with advanced cancer (University of Nottingham for Macmillan Cancer Support, 2011) - Provides findings from a study looking at the experiences and main support needs of older carers looking after someone with advanced cancer.

• Hospice UK has developed a guide for organisations planning to set up support services for carers of people with life-limiting and terminal illnesses. It provides an overview of some of the issues and examples of services that already exist. It is primarily aimed at hospices setting up services, but provides background information a range of providers would find useful.

• Committed to carers: Supporting carers of people at the end of life (Marie Curie, 2012) - A report by the Marie Curie Policy and Public Affairs team, based on qualitative research funded by Marie Curie and undertaken by the Health Experiences Research Group in the Department of Primary Health Care Sciences at the University of Oxford.

• Age UK is currently piloting ways of providing older carers of those nearing the end of life with practical and emotional support through trained volunteers. Read more here.

More

• Understanding death and dying
• Practicalities to think about when someone is dying
• At the bedside
• Coping with family dynamics when someone is dying
• Further information and support