Care in the last days and hours of life with dementia
We use the words ‘dying’ or ‘terminal’ to describe when a person is in the last few days or hours of life. Sometimes a death is sudden and unexpected. More often, though, a person shows signs that they are dying: it is important to recognise these and plan ahead. Symptoms need to be anticipated and managed well. We also must work alongside family and loved ones to help them be prepared and supported through what is a highly emotional and uncertain time.
I don’t want my mother to die alone. I want her to be comfortable and to die with dignity.A daughter of a person with dementia.
Getting prepared for a death
Care staff need to know the person’s wishes for their death: where they would prefer to be when they die, who should be present, how pain might be treated, and so on. A person’s spiritual and cultural needs are important throughout their life, but may take on a particular significance at the end of their life. Only if we know this information – and have recorded it accurately – can we support them properly to have the best possible, and personalised, end-of-life care (for more on this, see the feature on ‘Advance care planning’ in ‘Making decisions’ section.)
Ensuring that a person is as physically comfortable as possible when they are dying also takes preparation. Is a hospital-style bed available, for example, if it is needed? Is a suitable mattress to hand? How can dignity best be maintained if all personal care is provided at a person’s bedside? Does the person’s room need to be altered in any way, for example fitting new lighting?
Relatives too need to be prepared. For family, having a good relationship with care staff may be a critical part of the lead-in to this dying phase. You also need to know family members’ wishes at this time. For example, do they want to be present for the death if possible?
How can you recognise when a person is dying?
Recognising when a person with advanced dementia is dying may not always be easy as they may have many general signs and symptoms of dying already. For example, some common signs and symptoms seen in people dying are:
- profound weakness
- a reduced intake of food and fluids
- drowsy or reduced awareness
- gaunt appearance
- difficulty swallowing
- needing assistance with all care
- disorientation to time or place
- agitated or restless
- difficulty concentrating.
People with advanced dementia may show some of these signs and symptoms for months or even years – making it hard to tell if the person is approaching death. However, if these symptoms become much worse over a period of two to three weeks, or even days or hours, it is important that a doctor or nurse sees the person. If the doctor or nurse thinks that the person is deteriorating or nearing the end of life and it would be in the person’s best interest to be cared for in their own home or care home, then discuss this information with the person’s family. They should also be given an explanation of why the deterioration is happening and the care that is going to be given. It is important to note that a person should never be sent to hospital when death is expected: the death is more likely to be traumatic, unsupported and complicated by other medical events (such as an infection).
When the dying process is established, the person may experience further changes:
- losing consciousness (you are unable to wake them)
- no longer able to swallow
- ‘terminal restlessness’ (for more on this, see below)
- changes to breathing pattern and circulation (for more on this, see below).
- Final signs and what to do
If it has been established that the person is now dying and they become restless, this is often referred to as ‘terminal restlessness’. It is important to recognise restlessness and report it to a doctor or nurse immediately. Restlessness could be due to pain or high temperature and needs to be relieved.
If you notice the person is restless and you think they are uncomfortable you could try helping them move into a more comfortable position. If this does not help, seek advice as they may need pain relief. Likewise if you notice the person is hot to touch then they may need to be cooled down by a fan or cool flannel on their forehead and given rectal paracetamol by the nurse. They may also need medication to relieve the restlessness if the above does not help.
As death approaches the person’s breathing pattern can change. This is caused by the person going into unconsciousness. It is often called ‘cheyne stoke breathing’. The person may have periods where they have regular breathing, then stop breathing for a few seconds. Breathing usually gets faster and there can be long gaps in between. The person who is dying is unaware of this but family members may find this quite distressing. It is important that you or another senior member of staff explain to the relatives that this is what is to be expected and that the person is unaware. It is ‘natural’.
Bubbly secretions are also known as ‘death rattle’. The person’s breathing will sound wet or gurgling. This can occur in the last few days or hours of life. It is important to inform the family that the person is unaware of this and it is not distressing for them. However, again, it may be distressing for the family to listen to so it will be important to explain to the family what is happening and why or find someone who can.
Consider changing the person’s position, for example raise the head of the bed and/or change their position onto the side, and seek advice from a doctor or nurse as medication can be given to dry up secretions.
The person’s skin may become quite pale and clammy. Their fingers and feet may have a blue tinge. This is because the person’s blood flow around the body is slowing down as death approaches. This is natural and the person is unaware of this. It is important to inform family when this occurs and explain why.
Offer touch and human contact
Sit with the person, hold their hand and talk to them as if they can still hear you. Hearing can be the last sense that a person loses at death. This shows that you care and shows respect. If family are at their loved one’s bedside, stay with the person when the relative has a break, and again hold the person’s hand.
As a care team, you would need to plan how you can provide this kind of one-to-one support.
Provide physical comfort and care
Assess the person to ensure they are not in discomfort or restless, and offer the kind of care described in the above section (‘Final signs and what to do’). Reduce any interventions to only what is necessary, for example change the person’s position every few hours or when they need changing.
Give regular mouth care. This can be done hourly to prevent the person’s mouth from becoming dry. Apply Vaseline to keep lips moist.
Give eye care, for example use a soft piece of wet clean gauze to prevent the person’s eyes from looking sticky.
Recognise and meet spiritual and cultural needs
Care providers also need to be attentive to meeting a person’s spiritual or cultural needs at the end of life. For one person, this may involve making sure they have contact with a religious leader (for example, a priest) in the last days or hours of their life, while another may want their favourite composer’s music to be played quietly but continuously throughout the period. This information should be recorded clearly, and should not come as a surprise to care staff who will know the person – their life history, preferences and nature – well. You should also discuss these aspects with the person’s family or friends.
Support family and loved ones
It is vital that the person’s family and loved ones are aware that the person may be in the last few days or hours of life. Share information in a gentle and sensitive manner, drawing on those staff who have the strongest relationships with the person and their family. Giving family members space to explore their feelings and concerns is a critical part of good end-of-life care.Often family and loved ones want to be present when the person dies. They should know that changes can happen suddenly and the person may die, for example, when they have just popped out of the room to use the bathroom.
Sometimes, family members may not want to be present at the death. Family and relatives should never feel that they should stay, but always give them the opportunity to stay and to be involved in care as they wish.
What does best practice look like? Introducing the Priorities for Care of the Dying Person
Published June 2014 by the Leadership Alliance for the Care of Dying People to replace the Liverpool Care Pathway, the document sets out the duties and responsibilities of health and care staff.
There are five priorities:
- 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:
- QCF Mapping: Care in the last day and hours
- Activity: Care in the last days and hours
- What the research says: End of life care
Further reading Open
The Gold Standards Framework. For more information visit www.goldstandardsframework.org.uk/
Leadership Alliance for the Care of Dying People (2014) Priorities of care for the dying person. London: Leadership Alliance for the Care of Dying People.
Mitchell, S.L., Kiely, D.K. and Hamel, M.B. (2004) ‘Dying with advanced dementia in the nursing home’, Archives of Internal Medicine, vol 164, pp 321–26.
Mitchell, S.L., Morris, J.N., Park, P.S. and Fries, B.E. (2004) ‘Terminal care for persons with advanced dementia in the nursing home and home care settings’, Journal of Palliative Medicine, vol 7, no 6, pp 808–16.
National Council for Palliative Care (2012) How would I know? What can I do? How to help someone with dementia who is in pain or distress. London: NCPC.
National Council for Palliative Care (2009) Out of the shadows: End of life care for people with dementia. London: NCPC.
Pace, V., Treloer, A. and Scott, S. (2011) Dementia: From advanced disease to bereavement. Oxford: Oxford University Press.
Watson, M. and Lucas, C. (2003) Adult palliative care guidelines. London: The South West London and The Surrey, West Sussex and Hampshire (SWSH) Cancer Networks.
Useful links Open
Care of dying adults in the last days of life
This December 2015 guideline from NICE (NG31) covers a range of issues, including communication and shared decision-making, as well as hydration and managing common symptoms, in the last two to three days of life.
Dementia and end of life planning
This information on the NHS Choices website presents information on care at home, hospice care and palliative care for people with dementia and includes a five-minute video on palliative care at home for people with dementia.
Difficult conversations: making it easier to talk to people with dementia about the end of life
The National Council for Palliative Care (NCPC) and the Dying Matters Coalition produced this booklet to help both professionals and carers of people with dementia to open up conversations about end of life wishes, particularly early in the dementia process. The booklet is available to download from the NCPC or Dying Matters Coalition website for a small charge.
End of life care for people with dementia living in care homes
This 2012 research briefing from SCIE looked at this issue from a range of perspectives, including people with dementia, family carers and care home staff, and found that more research and support is needed in this area.
Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP has developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.
Living and dying with dementia in England
This 2014 joint report from Marie Curie and Alzheimer’s Society investigates the barriers to people with dementia receiving good end of life care in England.
Time to talk?
This leaflet put out by the Dying Matters Coalition looks at how to start conversations with people with dementia about end of life care, and it covers ‘What to talk about’ and ‘What happens if you don’t talk’, and ‘When to talk’.
Dementia end of life care: special interest group (SIG)
A new network run by Dementia UK and Hospice UK provides an interactive forum for practitioners with an interest in dementia end of life care. The group meets regularly and summaries from the meetings can be downloaded from the Hospice UK website.
Related pages from this section Open