Supporting an adult with a learning disability when someone they know is dying or has died

It’s important to have open and supportive conversations with the person with a learning disability when someone they know is dying or has died. You may worry about the person becoming confused or upset. But that is a normal reaction and should not stop you from talking to the person. There are things you can do to help them understand what to expect and support them.

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Everyone with a learning disability has different communication needs, previous experiences of people dying, and understanding of death. Think of the individual person and what might work best for them. Here is an example of how you could start to have this conversation:

“I have some bad news. You know that [the person they know] has been ill for a while. We have been told that they will not get better from this illness. Do you know what that means? Do you want me to tell you more about this?"

Sometimes, people are not sure whose responsibility it is to tell the person. It may help to speak to everyone close to the person to agree an approach. For example, family members, a support worker or carers.

It’s often best if the news comes from someone they trust and who can support them. It’s also helpful if someone can tell them in person so that they can see what they take in and how they respond.

It can help to tell other people what has been said – for example, family members or carers.

Telling the person that someone they know is dying, can help them to:

If the person is not told, they cannot prepare for the death. When the person dies, it may be a bigger shock and they may be angry they were not told. They may also be confused or angry about why they cannot see the person, or why the person cannot do things they normally do.

Telling someone with a learning disability that someone they know has died can help them to grieve and then begin to:

If they are not told, the person with a learning disability will still notice changes in their life. For example, that they cannot see, visit or talk to the person who has died. They may also notice that family or friends stop talking about the person. This could affect their mental health and physical health.

If they find out about the death in the future, they may feel angry or upset, and lose trust in people around them.

Some people may not want to tell the person with a learning disability that someone they know is dying or has died. This may be because they do not want to upset them or they think the person will not understand.

Try to explain that telling the person can help them to understand and process what is happening, and prepare for their future. If appropriate, you could challenge the person gently by asking questions such as, “Do you think they would want to know?” or “Do you think that talking to them now might help them in the future?”

Sometimes, people are not sure whose responsibility it is to tell the person. It may help to speak to everyone close to them to agree an approach. For example, family members, a support worker or carers.

Grief is different for everyone. They might feel shocked, upset, angry, annoyed, worried, confused or numb. All these feelings are normal. It’s important to make sure people know it’s OK to feel these things.

Some people may seem OK at first and then have feelings of grief at a later time.

Some people may be able to communicate how they feel verbally and other people may communicate in different ways. You may notice changes in people’s mood, facial expressions, posture or gestures. Some people may not be interested in activities they normally enjoy.

People with a learning disability are likely to experience complicated grief, or prolonged grief disorder. This is when strong feelings have a significant impact on someone's daily life for more than 12 months. They will need professional support to help them.

Sometimes, people’s behaviour can change or become more challenging when they are dealing with difficult news and worries. Try to be empathetic and support them to share their feelings or concerns.

You may notice changes to the person’s daily routine or health. For example, they may be tired, find it difficult to sleep, eat more or less than usual, or have aches or pains.

The person may not look after themselves. For example, they may eat more or less, or drink more alcohol.

The person may also worry that they will become ill and die.

If they or you are worried about any changes, it can help to see their GP.

Everyone will need different types of support. Here are some things that may help:

Marie Curie has a free Support Line, Companion over the phone service, and Telephone Bereavement Support Service that may help.

You may want to distract the person or cheer them up. It‘s important to be led by the person. Sometimes distraction can be helpful - it can help to continue to do things they enjoy when they want to and keep a daily routine.

But it’s important to also give them space to grieve. Ignoring their loss could make them think their feelings are not normal or not important. It also may not allow them to share how they are doing, understand their feelings and get support.

Other people may be grieving the loss too – such as people in the same activity group, day service, residents and staff. Doing things together can help to process what has happened and remember the person who has died.

Things that may help to support people include:

You can ask the residents, service users and staff how they want to remember the person. You might suggest things like:

It may also help to maintain contact with the person’s family and friends to support each other through this time.

Everyone will have different worries and the practical impact of the death will be different for each person.

Sometimes, people with a learning disability can seem focused on their own lives when someone dies. This does not mean they are selfish. They may need more time to process what has happened and understand their loss. They also may be more reliant on other people, so may understandably be more worried about changes to their life. They may also find it more difficult to adapt to changes.

The person may worry about:

It can help to ask, “Is there something you’re worried about?” or “Tell me about what has changed in your life?”

If the person cannot speak, they may be able to express their concerns in different ways. For example, drawing, responding to specific questions or using a visual board.

You can reassure them where possible. For example, “We can still go to the cinema – I can take you instead” or “You will still live here and I will still support you”. Give them opportunities to continue to do the things they enjoy if possible.

You can also help them to adapt to changes in their life. For example, using a visual planner to get used to a new routine. You could use visuals, photos or visits to help them adapt to new places or people in their life.

When someone dies, it might have an impact on the finances of the person with a learning disability. Any money they are left could affect their means-tested benefits, for example Universal Credit or Housing Benefit. It could also affect their care support package – for example, the money left to them may be used to pay for their care rather than funding from their council. Money left to them should not affect benefits that are not means-tested, for example Personal Independence Payment (PIP) or Attendance Allowance.

It‘s important to protect the person’s finances - for example, by setting up a Will and a Trust. The person, or their family or friends, should get legal and financial advice to support them.

Family members or support workers may ask you about how to involve the person with a learning disability in the funeral.

The person can go to the funeral if they want to. Funerals can help people understand what has happened and come together to support each other. It may help to explain what a funeral is and ask the person if they would like to go.

Whether or not they attend the funeral, the person with a learning disability could be involved in the funeral in a meaningful way. For example, they could choose music, flowers or photos. Or they could hold a photo of the person and tell people about them if they attend.

If there is an open casket (where you can see the body), it can help to explain to the person what that might look like and ask them if they want to see it.

It’s normal for anyone to get upset or emotional at a funeral. It can be difficult to support the person at the funeral if you are also grieving. It may help to have extra support from a support worker, carer, family member or friend.

You could help the person prepare for the funeral by doing things like: