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Identify people living with dementia who are nearing the end of their lives.

You may struggle to identify when the person you are caring for is moving in to a more palliative stage of their dementia. Health and care staff are provided with the training and resources to be able to identify this stage and provide the support that the person needs.
 
For extra information, evidence and best practice please scroll down to the bottom of the page.

Regional offerings

Advance Care Planning and Future Wishes

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

Dementia United

Working towards improving the quality of life for people living with dementia or caring for someone who has dementia, supporting people to live as independently as possible and providing access to services when needed.
Weblink: https://dementia-united.org.uk/

Let's talk about death, shall we?

A new creative tool to support people with dementia: Polly Kaiser, consultant psychologist, has worked with award-winning illustrator, Tony Husband, and dementia trainer, Linda Green, to produce a cartoon booklet which helps people to prepare for the end of life.

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

Palliative care is care given to people with chronic, often life-limiting illness. Our focus is on improving quality of life. We have a city wide service that provides seamless care. The service is delivered by MLCO staff in partnership with Macmillan Cancer Support.

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.

Website: https://www.manchesterlco.org/services/citywide-adult-community-services/manchester-macmillan-supportive-and-palliative-care-service/

Manchester Macmillan Supportive and Palliative Care Service Adult Referral Form: Macmillan Referral Form July final version


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

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/

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

Social Care Institute for Clinical Excellence - End of Life Care Resources

When a person is living with advanced stages of dementia, all areas of human ability are severely compromised. They have to rely on others for social engagement, occupation and activities of daily living. This section looks at what it's like to live with advanced dementia, communication and the impact on carers.
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

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

Integrated POS (IPOS) for Dementia and Translations

IPOS-Dem is a proxy-completed measure for people with dementia living in care homes. It is derived from IPOS, and developed for use by unqualified care staff working in care home settings. IPOS-Dem is designed to support systematic assessment of care home residents with dementia and incorporates common symptoms and problems experienced by this population. It is accompanied by an instruction manual on its use to support routine assessment of residents with dementia.

Website: https://pos-pal.org/maix/ipos-dem.php


ReSPECT for healthcare professionals

ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment. The ReSPECT process creates a summary of personalised recommendations for a person’s clinical care in a future emergency in which they do not have capacity to make or express choices. Such emergencies may include death or cardiac arrest, but are not limited to those events. The process is intended to respect both patient preferences and clinical judgement. The agreed realistic clinical recommendations that are recorded include a recommendation on whether or not CPR should be attempted if the person’s heart and breathing stop.

Website: https://www.resus.org.uk/respect/respect-healthcare-professionals


Evidence


Lancet Commission 2020: "The trajectory of dementia is often unpredictable and palliative care initiation should reflect need not prognosis. Decision making about end of life is complex and simple rules of thumb, co-designed with staff and carers, provided clarity in some small studies."

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


Understanding dying Dementia UK leaflet - https://www.england.nhs.uk/north/wp-content/uploads/sites/5/2018/06/palliative-care-guidelines-in-dementia.pdf

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
Plus any of the following:
  • Weight loss
  • Urinary tract Infection
  • Severe pressures sores – stage three or four
  • Recurrent fever
  • Reduced oral intake
  • Aspiration pneumonia

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