Identify people living with dementia who are nearing the end of their lives.
For extra information, evidence and best practice please scroll down to the bottom of the page.
Regional offerings
Advance statement about your wishes
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
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
Weblink: https://dementia-united.org.uk/wp-content/uploads/sites/4/2021/01/Advance-Care-Planning-contact-details-in-each-GM-locality.pdf
Dementia United
Weblink: https://dementia-united.org.uk/
Let's talk about death, shall we?
Website: https://www.penninecare.nhs.uk/application/files/2415/8151/4384/Dementia_end_of_life_leaflet.pdf
Manchester Macmillan Supportive and Palliative Care Community Service
Who is the service for?
Our service is usually for people whose illness means they are thought to be in the last year of life. However, we also provide care for people with longer life-limiting illness. We also provide support to families and carers. This is a really important part of supporting patients.
What does the service provide?
The service works from three hubs across Manchester so our teams work in their local neighbourhoods. The hubs are located in North, Central and South Manchester.
The teams provide support for adults facing life-limiting illness who are registered with a Manchester GP. The most common example is cancer, but our teams support patients with other conditions. We visit patients in their own home or care home. We also provide telephone support and advice when required.
The teams recognise that emotional, family, financial and spiritual concerns may be just as important to you as physical problems. We can:
- Provide treatment and advice to help manage any symptoms
- Offer practical advice and support to do the things that are important to you
- Support families and carers
- Signpost to other services including financial advice
- Support you to make choices and plan for your future.
Manchester Macmillan Supportive and Palliative Care Service Adult Referral Form: Macmillan Referral Form July final version
National offerings
Advance Care Planning
Weblink: https://www.england.nhs.uk/wp-content/uploads/2018/04/my-future-wishes-advance-care-planning-for-people-with-dementia.pdf
Alzheimer’s Society
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/
NICE Dementia Guidance
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
Social Care Institute for Clinical Excellence - End of Life Care Resources
Weblinks:
Carers’ needs - End-of-life care and dementia: https://www.scie.org.uk/dementia/advanced-dementia-and-end-of-life-care/advanced-dementia/
Advanced Dementia: https://www.scie.org.uk/dementia/advanced-dementia-and-end-of-life-care/end-of-life-care/last-days-hours.asp
End of life care - dying at home: https://www.scie.org.uk/socialcaretv/video-player.asp?v=dyingathome
Healthwatch
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
Integrated POS (IPOS) for Dementia and Translations
Website: https://pos-pal.org/maix/ipos-dem.php
ReSPECT for healthcare professionals
Website: https://www.resus.org.uk/respect/respect-healthcare-professionals
Evidence
Alzheimer’s Society 2017. End of life factsheet: A person in the later stages of dementia may get worse slowly over many months. During this time they will usually:
- become more frail
- have more frequent falls or infections
- have problems eating, drinking and swallowing
- be more likely to need urgent medical care
- become less mobile
- sleep more
- talk less often.
NICE, 2016. Clinical guideline: "People nearing the end of their lives with dementia need to have their needs assessed and their wishes taken into account in order to make them feel comfortable but also to enable them to die with dignity in a place of their choosing
Palliative care guidelines in dementia: Advanced dementia is an incurable, progressive condition. With time, palliation becomes the primary goal of care. However, recognising this phase is often very complex as survival rates vary greatly for people with advanced dementia, and is hard to predict. The duration from diagnosis to death ranges on average from 1.1 years to 8.5 years. For some individuals, it may be much longer. There are two principal stages of advancing dementia that it is beneficial to try to predict and recognise. The first stage involves the period when the person is enters the last months or years of life; the other is that shorter time scale when the person is approaching the active dying stage - the last few days or weeks of life. These two stages may be distinguished as, for the longer term, ‘the palliative phase’ and, for the later shorter term, ‘the active dying phase’.
Best Practice Resources
Rules of Thumb 2019 for End of Life Care for People with dementia: "To be able to recognise the dying phase of dementia and use the toolkit to aid decision making around common dilemmas. Always try to involve the person with dementia, whenever possible. Continue to reassess capacity of the person with dementia and try to involve them in their care and in each new decision, and at all stages. If the person has the ability to make decisions, consider advance care planning (if not already done). The person may want to involve family and others in these discussions. Ask about the person’s preferences for health and care treatment as well as their other wishes. If the person with dementia does not have the ability to make a specific decision, ensure decisions involve any nominated family or advocate and know who, if anyone has lasting power of attorney (or deputyship) powers covering health and welfare. If the person with dementia has no family/friends, then identify someone who is able to advocate for them on their behalf. This may include an Independent Mental Capacity Advocate (IMCA) for major decisions"
Palliative care guidelines in dementia: The Surprise Question, “Would I be surprised if this patient died in the next few months, weeks or days?”, if answered “No”, is an intuitive way of identifying people at the end of life. However, as the progress of dementia is often slow and subtle, clinicians may find it difficult to spot the likelihood of death within a year. The triggers to consider that indicate that someone is entering a later stage are:
- Unable to walk without assistance and
- Urinary and faecal incontinence, and
- No consistently meaningful conversation and
- Unable to do Activities of Daily Living (ADL)
- Barthel score
- Weight loss
- Urinary tract Infection
- Severe pressures sores – stage three or four
- Recurrent fever
- Reduced oral intake
- Aspiration pneumonia