General Resources for Carers
This guide is for people who have care and support needs, their carers and people who are planning for their future care needs.
Some useful UK resources
It is essential for carers to find time for themselves and pay attention to their health and welfare. Caring for someone who is dying can be exhausting and highly emotional, but also very rewarding. So pay attention to your needs and don’t be afraid to ask for help. A list of UK resources.
In this section you can find out about caring for someone with a terminal illness by seeing and hearing people share their personal stories on film. Our researchers travelled all around the UK to talk to 40 people in their own homes. Find out what people said about issues such as becoming a carer, impact on work and lifestyle and planning for death. We hope you find the information helpful and reassuring.
A comprehensive guide to caring for someone with dementia
Everyone who has been diagnosed with dementia should have a care plan drawn up with healthcare professionals. End of life care should be a key part of this dementia care plan. A guide for those in the UK
A touching account of how a medical professor reassesses Quality of Life in a patient on life support
Care Together a website which helps family and friends to schedule visits and tasks in caring for a loved one.
Advice relating to some practical aspects of caring for a dying person e.g. preventing pressure sores, repositioning someone in bed, decreased appetite, terminal restlessness.
The Conversations for Life Programme (UK based) offers tools and inspiration for families, professionals and communities to start talking about end of life care now.
Resources for near and at the time of death
The information section of this website is primarily for people approaching the end of their life, and their carers, relatives and friends. It will also be of interest to anyone thinking about what they want for their own end of life.
Find Me Help is the UK’s most comprehensive directory of services for people in the last years of life, their families, carers and friends.
Some suggestions for friends and family sitting at the bedside of a dying person – particularly if they are in hospital or in a hospice.
Suggestions for relatives and carers of people who are dying in a hospice, nursing home or hospital.
A death in the family, especially when it’s the last parent, can throw up a lot of unresolved and painful issues.
Some helpful suggestions of how to be with someone right at the end of their life; physical signs that death is near; the moment of death; death-related phenomena; immediately afterwards.
End of life phenomena; Choosing the moment to go
Practical guidance, information and resources on: how to say goodbye; the importance of good listening skills; and what the dying may experience as death approaches. Also guidance on talking to children and young adults, and practical guidance on how to break bad news. Excellent list of related resources here.
Information and support on Living with a terminal illness, Being there for someone and Information for bereaved family and friends. Also provides expert nursing care at home.
UK resources compiled by DyingMatters.org
List of UK practitioners in the field of death and dying
Holistic and spiritual companions to anyone at the end of life
Training to be a Soul Advocate in the Midlands, UK
Doulas are specially trained companions who fill the gap between family and professional care. Their support allows people to feel more able to cope with death, dying and loss, whether at home, in a nursing home or hospital. Find a UK doula here.
US organisation providing educational materials about end-of-life care, palliative medicine, and hospice care