Finding purpose in grief – Helen’s story
Helen reflects on her dementia journey and grief after husband Clive died from frontotemporal dementia in 1999.
When you are thinking about your future care, it is important to discuss your wishes with family, friends and health and social care professionals and make a record of what you would like to happen. You can do this by making an Advance Care Plan.
An Advance Care Plan is a record of your preferences about your future care and support, including decisions about medical treatment and end of life care. It is sometimes known as an Advance Statement.
It is not legally binding, but will help the people involved in your care understand and respect your views and wishes.
If you have dementia, making an Advance Care Plan is important because it may become harder to make decisions or communicate your wishes as your condition progresses.
If you are making an Advance Care Plan, try to involve close family members and friends, and your health and social care professionals.
An Advance Care Plan covers matters like:
- how you would like to be cared for, and who by
- medical treatments you do and don’t want
- where you would prefer to die
- funeral wishes and arrangements
- details of your Will
- your spiritual and cultural values and how they will be respected
- things that are important in your life now
- who you would like to be involved in making decisions if you can no longer do so. You can do this by giving them lasting power of attorney – see Sources of support, below, for more information
Our Advance Care Plan template will help you write your Advance Care Plan with the help of those around you. You can download and print it here.
To help you fill in the template, read our booklet Planning now for your future which provides you with more information.
An Advance Decision, also known as an Advance Decision to Refuse Treatment (ADRT) or ‘living Will’, is a legally binding document that sets out what medical treatment you do not wish to receive in the future, such as:
- ventilation (breathing support if you cannot breathe by yourself)
- treatment of infections with antibiotics
- cardiopulmonary resuscitation (CPR)
You must name each treatment you do not wish to have, sign the document, and get it signed by a witness.
The charity Compassion in Dying has a template that you can fill in online or on paper.
Thinking about your future wishes can be difficult. If you would like to discuss Advance Care Planning or any other aspect of dementia with a specialist Admiral Nurse, please call the free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm; Saturday and Sunday 9am-5pm), email helpline@dementiauk.org or you can pre-book a phone or video appointment with an Admiral Nurse.
Dementia UK information that may be helpful
- Advance Care Plan template
- Planning now for your future booklet
- Lasting power of attorney
- Mental capacity and decision making
- Choosing a care home
- Recognising the later stages of dementia and moving towards end of life care
Other resources
- NHS guide to Advance Statements
- NHS guide to Advance Decisions
- Gov.uk information on making a Will
- Compassion in Dying – help with preparing for the end of life
Information line: 0800 999 2434 - Dying Matters – information and support with end of life care
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.
