Dementia Gateway: End of life care

Introduction

'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

Explore the links below now to read more about this topic:

• 1. IntroductionOpen

  The words 'end of life care' mean caring for someone as they near the end of their life. However, in the case of dementia, it can be difficult to predict when a person is 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.

  In addition, a person with dementia 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.

  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.

  This feature looks at what is involved in good end of life care for people with dementia. Overall, good end of life care is generally not complicated, but simply just good person-centred care – that is, care that responds to the needs of the person.

• 2. So is dementia a terminal illness?Open

  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.

• 3. Making decisions in a medical emergencyOpen

  Often, acute illness occurs at night. In these situations, an on-call doctor may have to make a difficult decision about whether to admit the person to hospital. But typically they won't know whether or not the person with dementia has asked to be cared for and made comfortable only (that 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' in this section).

  People with dementia need to be supported to make advance care plans to make clear their wishes in these circumstances. Care providers too need to make sure that they are prepared for situations like this, and do their best to ensure that they know, document and meet the person's wishes. (See feature on 'Advance care planning' in the 'Making decisions' section.)

• 4. Managing symptomsOpen

  Most of the symptoms experienced by frail older people with dementia at the end of life, such as pain or swallowing difficulties, do not require specialist palliative intervention, but just good general care. They often experience symptoms similar to people with cancer, such as:

  • pain
  • pressure sores
  • agitation
  • eating problems and loss of appetite
  • constipation
  • breathing difficulties
  • low mood.

  If the person has started having more acute 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 acute 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 feature on 'Advance care planning' in the 'Making decisions' section.)

• 5. Communication across the whole care teamOpen

  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.

• 6. Specialist end of life resources Open

  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.

  Two of the best resources for delivering good end of life care are the Gold Standards Framework (GSF) and the Liverpool Care Pathway. 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, visit the Gold Standard Framework website.

  Whereas the GSF supports good quality end of life care in the last year or months of life, the Liverpool Care Pathway (LCP) focuses on the last days and hours of life. It is another systematic approach and many of its elements are very similar to the GSF:

  • comfort measures and symptom control
  • psychological support
  • religious and spiritual support
  • communication with the person and their family
  • communication with healthcare professionals.

  For more information on the LCP, see the feature on 'Care in the last days and hours of life' in this section.

  If you want to find out more visit the Liverpool Care Pathway website.

  Though still subject to much research and validation, both these resources are being used in more and more places to support better end of life care for people with dementia with positive results.

Over to you!

Click here to do a quick activity that will help you to understand why this may be a distressing and emotional time for family and carers.

The activity can be done alone or with colleagues and you can also download a copy. Trainer's notes have also been provided.

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