People living with dementia and their carers should be supported to discuss future planning.

It is never easy to discuss an uncertain future, but dementia is a progressive condition and it is necessary to plan in advance. You can decide now how you would like to be cared for and supported if you are no longer able to decide in the future. Conversations about the future can be had with a dementia advisor or your GP at any time, and there is no need to make decisions immediately. Special appointments to discuss future planning may be helpful as they allow you to prepare for the discussion and think about what you want.
Examples of things which can be planned in advance include:

lasting powers of attorney,
advanced statements,
general needs or preferences in your Wellbeing Plan.

Once they have been agreed they can be shared with health and social care professionals involved in your care to ensure that everybody understands your wishes.

For extra information, evidence and best practice please scroll down to the bottom of the page.

Regional offerings

Advance statement about your wishes

An advance statement is a written statement that sets down your preferences, wishes, beliefs and values regarding your future care.
The aim is to provide a guide to anyone who might have to make decisions in your best interest if you have lost the ability to make or communicate decisions.

What does it cover?

It can cover any aspect of your future health or social care. This could include:

how you want any religious or spiritual beliefs to be reflected in your care
where you would like to be cared for, for example at home or in a hospital, a nursing home, or a hospice
how you like to do things, for example if you prefer a shower instead of a bath, or like to sleep with the light on
practical issues, for example who will look after your dog if you become ill

You can make sure people know about your wishes by talking about them.
By writing your advance statement down, you can help to make things clear to your family, carers and anybody involved in your care.
You can write it with support from relatives, carers, or health and social care professionals.

Is an advance statement the same as an advance decision?

No. An advance decision (also known as a living will, or advance decision to refuse treatment) is a decision you can make now to refuse specific treatments in the future.
An advance decision is legally binding, as long as it meets certain criteria.
Read more about advance decisions to refuse treatment

Who makes an advance statement?

You write an advance statement yourself, as long as you have the mental capacity to make these statements.
Mental capacity is the ability to make decisions. Sometimes, people do not have mental capacity. This can be for a number of reasons, including illness.
Visit GOV.UK to find out about creating a lasting power of attorney, and the Mental Capacity Act.

Is an advance statement legally binding?

No, an advance statement is not legally binding, but anyone who's making decisions about your care must take it into account.

How does an advance statement help?

An advance statement lets everyone involved in your care know about your wishes, feelings and preferences if you're not able to tell them.

Does it need to be signed and witnessed?

You do not have to sign an advance statement, but your signature makes it clear that it is your wishes that have been written down.

Who should see it?

You have the final say in who sees it. Keep it somewhere safe, and tell people where it is, in case they need to find it in the future.
You can keep a copy in your medical notes.

Thinking about your wishes

Dying Matters has information on talking about dying. This includes ideas for starting the conversation, letting people know your wishes, and things to think about.

Find out more about planning ahead

Contact details for Advance Care Planning in each locality in Greater Manchester.
Weblink: https://dementia-united.org.uk/wp-content/uploads/sites/4/2021/01/Advance-Care-Planning-contact-details-in-each-GM-locality.pdf

End of Life Care in Greater Manchester for People With Dementia

A syllabus was agreed with input from health and care professionals and carers, using evidence based good practice literature. The syllabus is to ensure consistency across Greater Manchester but individual educators will deliver in a way suitable for their locality's way of working. This is supported by the Rules of Thumb guide and a leaflet to start the conversations about end of life 'Let's talk about death'.
Weblinks:
Rules of Thumb Guide: https://dementia-united.org.uk/wp-content/uploads/sites/4/2021/01/03-UCL-Rules-of-Thumb-Guide-v14.0_PRINT-version.pdf
Greater Manchester syllabus for training on end of life care of those with dementia: https://dementia-united.org.uk/wp-content/uploads/sites/4/2021/01/2021-01-25-GM-Syllabus-v1.0.pdf

National offerings

Advance Care Planning

Advance care planning for people with dementia guidance from NHS England
Weblink: https://www.england.nhs.uk/wp-content/uploads/2018/04/my-future-wishes-advance-care-planning-for-people-with-dementia.pdf

Age UK

Age UK is the country's leading charity dedicated to helping everyone make the most of later life. Providing advice, support, information, fundraising, local services
Telephone: Advice line 0800 678 1602 free to call 8am - 7pm 365 days of the year
Weblink: https://www.ageuk.org.uk

Alzheimer’s Society

The Alzheimer’s Society provides reliable and up to date information to help you with every aspect of living with dementia.
Telephone: National Dementia Helpline: 0300 222 1122. Open 9.00am. – 5.00pm. Monday to Friday & 10.00am. – 4.00pm. Saturday and Sunday.
Weblink: https://www.alzheimers.org.uk/

Dementia UK

Dementia UK is a national charity, committed to improving quality of life for all people affected by dementia. They provide Admiral Nurses, who work with family members and carers in all care settings along with a helpline for family members or carers who would welcome accessing advice and support.
Telephone: 0800 88 6678
Email: direct@dementiauk.org
Weblink: https://www.dementiauk.org/

NICE Dementia Guidance

This guideline brings together all the research and evidence which covers assessment, diagnosis, treatment and support. It is for people at risk of developing dementia, people who are referred for assessment, people living with dementia as well as being for family and friends and health and social care staff and commissioners. It aims to improve care by making recommendations on standards people should expect to receive from their assessment, care and support as well as on training.
Weblinks:
We have provided links to the NICE guideline for dementia and a further link is provided to guidance on how to delay or prevent the onset of dementia.
National Institute for Health and Clinical Excellence (NICE) NG16 (2015) Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset: https://www.nice.org.uk/guidance/ng16
National Institute for Health and Clinical Excellence (NICE) (2019) Dementia: assessment, management and support for people living with dementia and their carers: https://www.nice.org.uk/guidance/ng97

Young Dementia UK

Support for young onset dementia (under 65); providing relevant information and also shares individual stories. This is also part of Dementia UK.
Telephone: Dementia UK Telephone: 0800 88 6678
Email: direct@dementiauk.org
Weblink: https://www.dementiauk.org/about-dementia/young-onset-dementia/

Healthwatch

Healthwatch is your health and social care champion. If you use GPs and hospitals, dentists, pharmacies, care homes or other support services, we want to hear about your experiences. As an independent statutory body, we have the power to make sure NHS leaders and other decision makers listen to your feedback and improve standards of care. Last year we helped nearly a million people like you to have your say and get the information and advice you need.
Telephone: Call: 03000 683 000 between the hours of 08:30 – 17:30 Monday to Friday
Email: enquiries@healthwatch.co.uk
Weblink: https://www.healthwatch.co.uk/your-local-healthwatch/list

Universal Principles for Advance Care Planning (ACP)

The Universal Principles for Advance Care Planning has been jointly published by a coalition of the partners listed above, in response to the Care Quality Commission report ‘Protect, Connect, Respect – decisions about living and dying well’ (2021).

universal-principles-for-advance-care-planning

Evidence

NICE Quality statement 3: Advance care planning: "As dementia is a progressive condition, it is important for people to be able to make decisions about their future care early on, before they find it difficult to communicate or they lack the capacity to do so. This is known as advance care planning. It is important that there are opportunities to review and change the plan as the dementia progresses and if the preferences or needs of the person change. Having an advance care plan ensures that the person with dementia can receive treatment and care according to their preferences, even when they can no longer express them."

Research paper: Advance care planning in dementia: "recommendations for healthcare professionals: Historically, dementia has not been recognized as a life-limiting condition that may benefit from a palliative care approach. It is now recognized and accepted, particularly in developed countries, that an integral part of care coordination and case management pathways for people with dementia should include end-of-life care. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care"

World Alzheimer Report 2016: "People living with dementia are particularly unlikely to have access to palliative care services at the end of life. Palliative care affirms life and regards dying as a normal process; intends neither to hasten nor postpone death; provides relief from pain and other distressing symptoms; offers a support system to help patients live as actively as possible until death, and to help the family cope during the patient’s illness and in their own bereavement. Evidence suggests that while carers can be resilient in the face of bereavement, intervention and support services are needed most in the period before the patient’s death. Nevertheless, a palliative care approach may be appropriate across the illness course, with early advanced care planning, and continuing review of care preferences."

Dementia Care Pathway: full implementation guidance: "It is important that a coordinated care plan that covers aspects of supporting well, living well and dying well is developed and agreed jointly by the person, their family and/or carer, and their health and social care professionals/team.

BPS 2014 A guide to psychosocial interventions in early stages dementia: there are many aspects to advance care planning, for example:

wishes and preferences – family, friends, GP, carers, etc.
health care decisions – to be made with the relevant professional
advance decisions – doctor and solicitor
Lasting Power of Attorney – discuss with your solicitor
advice on advance care planning – most professionals, memory services, dementia advisor"

My future wishes advance care planning for people with dementia: Advance Care Planning (ACP) is not a ‘one-off’ plan-making session. It is an inclusive, personalised, proactive and transparent process that cuts across health, social and community care settings. It focusses on what matters most to the person; so that they are involved in decisions about their health and wellbeing, and are more in control of living their life with their conditions.
ACP is essential in supporting delivery of the Government’s six point commitment to end of life care to reduce variation and ensure end of life care is of high quality and personalised
Continuity in the healthcare journey. An ACP conversation can be initiated or continued by any one of the ACP competent multidisciplinary team (GP, nursing care home and hospice staff etc.) involved in the care of the person with dementia. An established relationship with the person with dementia and those important to them (carers, friends, family) and knowledge of their preferences can also help support continuity.
Key priorities of the person that need to be explored. person’s wishes, choices and preferences, both personal and for care, emergency plans, cardiopulmonary resuscitation decisions, treatment escalation plans, preferred place of care and preferred place of death. It can include advance statements, advance decisions16 to refuse treatment, decisions about organ donation and end of life priorities of care including putting affairs in order.

Best Practice Resources

My future wishes Advance Care Planning (ACP) for people with dementia in all care settings: https://www.england.nhs.uk/wp-content/uploads/2018/04/my-future-wishes-advance-care-planning-for-people-with-dementia.pdf

Planning ahead. Alzheimer's Society, Leaflet: https://www.alzheimers.org.uk/get-support/publications-factsheets/living-with-dementia-planning-ahead

Advance-care-planning.asp Decision Aid: https://www.scie.org.uk/dementia/supporting-people-with-dementia/decisions/advance-care-planning.asp Decision-Aid.pdf -

document during COVID for carers to aid end of life care planning: https://dementia-united.org.uk/wp-content/uploads/sites/4/2020/12/COVID-

Dementia end of life leaflet, training resource: https://www.penninecare.nhs.uk/application/files/2415/8151/4384/Dementia_end_of_life_leaflet.pdf