Coping with the death of a person with dementia

How can carers, family and close friends of person at end of life get support?

Most people find it difficult to come to terms with the person with dementia approaching the end of life. Many carers say they’ve already started grieving while the person is alive and as the dementia has progressed. This may be because of the dementia progressing over a long period of time, and the changes that they are seeing in the person.

You should tell health and social care professionals about your own wishes, including the need to say goodbye to the person and whether you want to be with them at the end of their life, if this is possible. You may have your own spiritual and cultural needs and as a carer, it’s important that you are supported to express these and have them met.

Talk to hospital or community nurses or nursing home staff about how they can support you, including whether any spiritual or faith-based support is available. You may also find it helpful to turn to a religious leader or representative for support during this time, for example a rabbi, imam, priest or chaplain.

How can I plan ahead for a person's death?

When you know the person is approaching the end of life, you may want to consider looking for details of a funeral director in advance. This can be a very difficult thing to do, but it can be helpful to know that you have this in place. It is one less thing to think about after the person has died, which can be a very emotional time.

The person’s care arrangements and any advance care planning that they’ve made should mean that their circumstances are as appropriate as they can be.

Think about where the person is and what is around them to make them comfortable and supported.

What is the most suitable place of death for a person with dementia?

A person with dementia should be supported to die in the place of their choice whenever possible. For many people this will be somewhere familiar such as their own home or the sheltered housing or care home where they live and know the people around them.

How can I make sure the person's wishes and preferences are respected?

If the person has previously expressed a preference, this should be included in their care plan. It’s important that everyone involved in the person’s care knows about this preference.

In recent years, health services have become increasingly willing and able to provide palliative care in a person’s home.

If the person has expressed a wish to die in their own home, talk to the professionals caring for the person about this as early as possible. This allows time for plans to be made so that the person is able to die at home.

In what situations might a person with dementia die away from their home, sheltering housing or care home?

If the person has complex medical problems or needs a lot of nursing support, they may be more comfortable in a hospice. These are places that specialise in providing palliative and end of life care. They support a person to die in peace and comfort with their dignity and spiritual needs met as much as possible.

Unfortunately, many people with dementia die in hospital if they are admitted at the end of their lives. This tends to happen when they develop a condition that seems treatable at first but then have complications in hospital.

Moving to a busy and unfamiliar environment such as a hospital ward is often difficult or distressing and may not be what the person would have wanted. Even if this is the case, it can be reassuring to know that the person is comfortable and in a place that is supporting them fully.

How can a person's environment support them at end of life?

It can help to make the environment familiar – for example, by including familiar objects and pictures. The space should be peaceful and not overstimulating (without too much noise or clutter).

The environment should support the person to engage in different ways – interacting with other people, meeting their spiritual needs, and stimulating their senses. This may take many forms and should be based on the person and their unique interests. However, it may include:

• being near a window
• access to nature
• familiar smells
• music
• enough space for those important to the person to be with them.

A good environment should most importantly support the person’s privacy and dignity. It should also have space for staff and those important to the person to be able to provide care and support. It should also allow the person to process what is happening, if possible.

How can technology support a person at end of life?

In some circumstances, technological equipment can be used to help support the person at the end of life. This will depend on the individual and what works for them. Some electronic aids include:

• pressure sensors – these are sensors that can be placed under a bed or chair and can raise an alert when the person moves or gets up
• fall sensor – a device that raises an alert if the person wearing it falls over
• sensory lights – lights designed to give a stimulating, engaging or calming effect, which can help the person to engage with the world around them
• tablets or computers – images or videos on these can also help the person to engage with the world around them. They may be particularly helpful if family and friends are unable to get to their bedside.

How might I feel when the person is nearing the end of their life?

Knowing when someone will die is unpredictable. When the time comes, your experience and feelings will be unique to you. It may feel very intense, quiet or overwhelming.

Caring for someone at the end of their life can be a rewarding experience and a time of great closeness. Carers who have supported the person through dying and death often value this as an important memory.

How might I feel after the person dies?

You will experience and approach bereavement in your own way. It’s important that you are supported to grieve as you need and want to.

After the person has died, you may experience a range of emotions, including:

• numbness
• finding it difficult to accept the situation
• anger
• regret
• guilt
• sadness
• relief
• feeling isolated
• a loss of purpose.

You may feel very strong emotions, or you may feel that you have no strong emotions left.

Sometimes, other people may assume that you’ve already grieved for the person with dementia as their condition has worsened. Whether or not this is something you’ve felt, many people will still feel grief when the person dies.

Where can I get support after the person dies?

The period around the funeral is often a time when others offer most support. Afterwards you may need time to adjust to no longer caring for the person (this is sometimes called ‘delayed grief’). You may need to rebuild friendships that your caring role put on hold. You may continue to need emotional support during this time, but you may find that fewer people offer it.

Talking through feelings with family and close friends can often provide comfort, so try to tell people when you feel you need this support. You might find it helpful to join an online community where you can discuss your feelings honestly with people in similar situations. For example, you can visit Alzheimer’s Society’s Talking Point.

If you need more support or you are worried about your mental health, ask your GP about local bereavement services or contact Cruse Bereavement Care. Your local carers’ centre may also be able to help. You can use our dementia directory to find local support groups.

What practical things should I consider after the person dies?

Though you may find it difficult, it is important to think about:

• registering the death
• funeral plans
• changes to financial and legal arrangements and benefits.

You can find out more from Citizens Advice.

The person’s culture and beliefs should be acknowledged and respected. This includes how soon the person would like their funeral, whether they would like to be buried or cremated, and any rituals or ceremonies that are important to them. Talk to care staff about this.

If you cannot attend the funeral

There might be times when you or others are unable to attend the funeral in person. This could be because you are unwell or have a limited ability to travel. It could also be because there are restrictions on the number of people who can attend. 

If you want to take part but are unable to do so in person, speak to the funeral organiser to see if they offer remote participation. It may be possible to attend virtually using a video link accessible through a computer, tablet or smartphone. 

Some people find other ways to remember someone who has just died – for example, by leaving tributes on social media or funeral websites, sending flowers, or making donations to a cause chosen by the family. You could also create an online memory board.