Date Revised:

This is part of the Carers Road Map online guide for anyone who cares for someone with dementia.

Talking about end of life care 

Most people find that talking to someone about dying is not easy. However, planning ahead is important as it can improve the quality of care a person receives. People with a diagnosis of dementia are likely to lose the capacity to make decisions about their care in the future, so having conversations early on is vital. If you are having difficult approaching the subject see talking about death and dying on Dying Matters website.

Also see information about Carers Road Map: Legal and financial planning, Lasting Power of Attorney and making a will

Carers can play a vital role in end of life care, as you are likely to know the person well and be aware of their needs. If the person you care for has not made provision regarding their end of life wishes and has lost capacity to decide for themselves, it is good practice for health and social care services to include carers and other close relatives or friends in discussions about end of life care. See end of life care on NHS Choices.

Coping with bereavement 

Following the death of the person you care for, you may experience different emotions including loss, relief, and guilt and this is normal. Caring will have been a large part of your life and a feeling of loss of purpose is not uncommon. Most carers services can offer support during this time, giving you the opportunity to consider your options for the future. You can also get help from other UK organisations. 
Even when your caring role stops it is important that you look after your own health and wellbeing
See coping with grief.