End-of-life care and dementia: An introduction
This section looks at what is involved in providing good end-of-life care for people with dementia. Overall, this type of care is generally not complicated, but simply just good person-centred care – that is, care that responds to the needs of the person.
When a person has dementia, it can be difficult to predict when they are nearing death. They may present with signs that suggest they are very close to death, but in fact can show these signs for many months or even years. Or they may seem near to death and then improve and live for many months longer.
A person with dementia may not die 'from' dementia, but rather 'with' dementia. Meaning, they may die from another medical condition, for example cancer or heart disease. They may also have infections and minor illnesses on top of these ongoing conditions. Having these other conditions and illnesses may mean the person is cared for, or ultimately dies, in a hospital or a facility that does not specialise in dementia care.
Joe died peacefully in his own bed. We were there at the end with Joe, his wife and children as he took his last breath. We felt privileged to have cared for him right to the end.A care home staff member reflecting on the death of a resident.
For all these reasons, while knowledge about end-of-life care has increased greatly over the past ten years, particularly in areas such as cancer care, many people with dementia still do not receive good quality end-of-life care.
Is dementia a terminal illness?
Dementia is not always recognised as a terminal illness or the actual cause of death, often because there may also be other health problems, such as cancer or heart disease, which may be the main health concern. Dementia is, however, a terminal illness.
The majority of care home residents will have some form of dementia and often have a combination of basic and complex health care needs. Typically, when a person with dementia moves into a care home they die within two years of admission, so care home staff can develop a lot of experience caring for people at the end of life.
Making decisions in a medical emergency
People with dementia need to be supported to make advance care plans to make clear their wishes in medical emergenices. Care providers, too, need to make sure that they are prepared for situations like this, and do their best to record and meet the person's wishes. See the feature on Advance care planning in the Making decisions section.
Often, a patient become unwell at night. In these situations, an on-call doctor may have to make a difficult decision about whether to admit the person to hospital. Typically, however, they won’t know whether or not the person with dementia has asked to only be cared for and made comfortable (this is to have palliative care), and whether or not the person has elected to have any active treatment, such as resuscitation or intravenous antibiotics. This can lead to the distressing and relatively common situation where a person with advanced dementia is transferred to the acute hospital where they then die in unfamiliar surroundings. See the feature Care in the last days and hours of life.
Preparing a care plan in advance means care teams and carers can avoid this difficult situation, and make sure the person with dementia is as comfortable as possible.
Common symptoms experienced by frail older people with dementia at the end of life are pain or swallowing difficulties. These do not require specialist palliative intervention, but just good, general care.
These common symptoms are similar to people with cancer, such as:
- pressure sores
- eating problems and loss of appetite
- breathing difficulties
- low mood.
However, if the person has started having more illnesses, such as chest or urine infections, this is often a sign that the person is nearing the end of their life. Typically, this results in an admission to the hospital, which may not always be appropriate, especially if the person is in the last few days or hours of life. Many care home residents and their families would want these infections to be treated in their preferred place of care, perhaps their own home or the care home. See the feature on Advance care planning in Decision making section.
Communication across the whole care team
Many people have a role to play in end-of-life care – a GP, district nurses, care staff, speech and language therapists to name a few – so the network can be large. But one of the most critical aspects to good end-of-life care is making sure that each member of the care team communicates reliably with others in the team. Without good information-sharing, a person is less likely to receive the care they need.
In particular, often the care team can forget to make sure that family understands what is happening and are updated regularly. This can be distressing for the family at what is already a very difficult time.
Specialist end-of-life resources
Don’t forget to find out about what resources are available in your local area from specialist palliative and end-of-life care teams. These teams will provide support, care and advice to people with dementia who are dying and the care team working with them.
There are several resources that support the delivery of good end-of-life care.
OpenThe Gold Standards Framework
The GSF is a systematic but common-sense approach that provides health and social care professionals with a structure to help deliver good quality care at the end of life. It helps those working with people with dementia to identify those who are in the last years of their life, assess their needs, symptoms and preferences, and to plan care to meet these. This enables the person to live and die where they choose. GSF is designed to help the care team provide:
- the right care at the right time for the right person
- care that is person-centred and carer-centred
- care that plans ahead rather than simply reacting in an emergency or critical situation
- care closer to where the person with dementia wants to be cared for and to reduce unnecessary admissions to hospital
- partnership working so that the person with dementia receives good care in all care settings.
If you want to find out more about this approach, go to the website for the Gold Standards Framework.
OpenOne Chance to Get it Right
Whereas the Gold Standards Framework (GSF) supports good quality end-of-life care in the last year or months of life, One Chance To Get It Right focuses on improving people’s experience of care in the last few days and hours of life. It sets out the approach to caring for dying people that health and care organisations and staff caring for dying people in England should adopt, whether a person is dying in hospital, hospice or their own home.
OpenPriorities of Care for the Dying Person
Caring for people who are close to death demands compassion, kindness and a skilled application of knowledge. Priorities of Care for the Dying Person sets out the duties and responsibilities of health and care staff to:
- Recognise: The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly. Always consider reversible causes, for example, infection, dehydration, hypercalcaemia.
- Communicate: Sensitive communication takes place between staff and the dying person, and those identified as important to them.
- Involve: The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
- Support: The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
- Plan & Do: An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- Activity: Introduction - end of life care for people with dementia
- What the research says: End of life care (2013)
Further reading Open
Downs, Middleton-Green, Chatterjee and Russell (2016) End of Life Care for People with Dementia: A Person-Centred Approach. London: Jessica Kingsley Publishers
Gold Standards Framework: www.goldstandardsframework.org.uk/
Hospice UK and Dying Matters (2020) Talking about dying with people affected by dementia.
Leadership Alliance for the Care of Dying People (2014) One chance to get it right. London: Leadership Alliance for the Care of Dying People.
Marie Curie and Alzheimer's Society (2014) Living and dying with dementia in England
Marie Curie. Web resource: Caring for someone with dementia towards end of life
National Palliative and End of Life Care Partnership (2015) Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020
NICE guideline NG31 (2015) Care of dying adults in the last days of life
NHS Choices website Dementia and end of life planning
The Professional Palliative Hub: Introduction to Palliative Dementia Care
Dementia end of life care: Community of Practice (CoP)
A joint venture between Dementia UK and Hospice UK that brings together practitioners and clinical leaders.
Related pages from this section Open