Dementia Gateway: End of life care

Carers' needs

Key messages

Family carers often talk about 'losing the person they knew' with dementia before they die.
Carers often feel guilty if their relative who has dementia enters a care home.
End of life care decisions are not easy for carers.
There is a lot you can do to support carers at the end of life of the person with dementia.

Caring is what I do. He would have done the same for me if the situation were reversed.
A woman speaking about caring for her husband who has dementia

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

1. IntroductionOpen

Becoming a 'carer' may be an additional role that develops as part of a relationship between two people – but it doesn't replace the roles and relationships that families have lived with for many years. Carers speak about being a husband or wife (or a son or daughter) first, and then becoming a carer to that person when illness or disability occurs.

When we start working with a family it is important to remember that the relationship between the family carer and the person with dementia remains – but with some profound changes. Physical, emotional, social and financial changes over time can generate enormously difficult feelings – guilt, depression, resentment, anger, isolation and stress – and of course, as a result of these, the relationship changes.
2. Loss, grief and dementiaOpen
One of the most powerful feelings that people experience when someone close to them develops dementia is a sense of loss and grief. Carers may not recognise these strong feelings when the person with dementia is very much alive and in need of care and support. A carer may grieve many things:
- the person they once knew
- the future they had planned together
- the relationship they once shared
- the companionship, support or special understanding
- their own freedom to work or to pursue other activities
- finances or a lifestyle that they once took for granted.
3. Guilt and stressOpen

Many carers blame themselves if difficulties arise in the caring situation. It may be that they are unable to understand what the person with dementia is trying to communicate. If the person with dementia becomes ill or if the carer cannot resolve a particular problem (such as getting the person with dementia to drink enough water), the carer may find this increases their stress levels markedly.

Sometimes people assume that when a person with dementia moves into a care home this will largely resolve the stress of caring. Typically, this is not the case and in fact may leave the carer with feelings of guilt or a sense that they have 'given up'. This in turn may make them critical of the care in the care home.
4. Making difficult decisionsOpen

By the time the person with dementia nears the end of their life, carers may feel they have developed good practical support networks. However, many feel unprepared when it comes to making difficult decisions about end of life care, such as decisions about how to respond if the person needs hospitalisation or a crisis develops.

An advance care plan or an advance decision to refuse treatment made earlier by the person with dementia can give much-needed clarity at times when difficult decisions need to be made. (For more on this area, see the features on 'Advance care planning' and the 'Helping people make their own decisions' in the 'Making decisions' section.) But, to date, most people with dementia have not made these formal arrangements. As a result, in reality often it is carers who are drawn into making difficult decisions – either directly or indirectly – at the very time they are feeling highly distressed about their loved one's situation.

It is important to note that where an advanced decision to refuse treatment does not exist or there is no one appointed to make such decisions then a collective decision must be made using the best interests framework of the Mental Capacity Act (for more information see the feature on 'Advance care planning' in the 'Making decisions' section).

During this particularly stressful period, the calm and informed support of skilled staff could make an enormous difference.
5. What can carers do in the final stages?Open

In the final stages of dementia the person may not be able to recognise or communicate with their family. Many, if not most, families find this a very painful stage. Although the relationship seems very nearly over, carers may find it difficult to mourn fully because the person is still alive.

And yet, there are things you can suggest that may help.

Encourage gentle touch when other forms of communication seem difficult. Holding the person's hand, sitting with an arm around them, or even gentle hand massage, may be comforting for both the person with dementia and their loved one.

Set up a system for playing music, particularly music that was well liked by the person with dementia. This may bring comfort and promote a positive atmosphere.

Consider making some adjustments to the immediate care environment: this can help promote a calmer and more comfortable environment. Try to remove any loud, startling or intrusive noises, and have soft lighting. Are comfortable chairs available for visitors and carers? (see 'The environment' section)

Try using aromatherapy and essential oils in atomisers or in hand massage.

Suggest having familiar, valued objects – say a favourite family photo – close at hand to touch and look at. There may be other elements of the person's background that may provide comfort and familiarity to both the person with dementia and their carer (see the 'Getting to know me' feature in the 'Getting to know the person with dementia' section).

Help the family to recognise that they have done all that they could, and to consider getting some extra support for themselves (see 'A listening ear' below).
6. Emotional support for carersOpen

One of the best things we can do is to support carers to be able to talk about their feelings, and this is particularly true at the end of life. There are many possible sources for this emotional support for carers: perhaps a valued professional (for example, a mental health nurse), a carers group, a religious organisation, or even a close personal friend.

Another avenue for support – but unfortunately only available in a limited number of places in the UK – is the Admiral Nursing service. Admiral Nurses are mental health nurses who specialise in dementia. They work in the community with families, carers and other supporters or paid carers of people with dementia throughout the illness and offer information, practice advice and emotional support. For more information, see 'Extra reading and resources' below.
7. Am I still a carer? Coping after the person diesOpen
Each person is different. Some carers find that they grieve so much during the course of the illness that they have no strong feelings left when the person with dementia dies. Others experience a range of reactions that at times may be overwhelming, including:
- numbness, as though their feelings are frozen
- inability to accept the situation
- shock and pain, even if the death has been expected for a long time
- relief, both for the person with dementia and themselves
- anger and resentment about what has happened
- guilt over an incident that happened in the past
- sadness
- feelings of isolation
- a feeling of lack of purpose.
Carers may find it takes a long time to come to terms with the person's death. Those who have been full-time carers for a long time may be left with a huge void when this role ends. Often caring for a person with dementia over many years may result in the carer feeling cut off with a loss of friends and social contact. When they no longer find their days spent caring they may find it difficult to re-establish themselves.