Supporting people with learning disabilities through bereavement
Someone with a learning disability might need extra help to understand and cope with a bereavement. But it’s important they’re given this support and not shielded from the news, as this could make things more difficult in the long term.
Mencap, the charity for people with learning disabilities, says a learning disability is ‘a reduced intellectual ability and difficulty with everyday activities’, which affects them throughout their life. So, socialising or managing money could be challenging or they may take longer to learn complicated information.
Someone with a mild learning disability may only need support with specific tasks, such as applying for a job, but someone with a severe learning disability may need full-time care.
You might find it hard to explain to the person with a learning disability that a friend or family member has died, but they have a right to know. How and what you tell them will depend on their learning disability, the extent of that disability, and their relationship with the person who died. See the list of resources below if you’re not sure where to begin.
Explaining that someone has died
‘Sometimes people try to protect a person with a learning disability from difficult emotions by not talking about death, but this can make them feel even more confused and isolated when they do experience grief,’ says Monica Reardon, a divisional programme manager for Marie Curie.
When you do tell them, use clear language like ‘they’ve died’ rather than ‘they’ve gone to a better place’. Let them know it’s OK to be angry or upset, and that crying is normal when someone has died – like any of us, the death of a loved one is incredibly painful.
Be patient and give them time or space, if that’s what they want. Reassure them that the death of their loved one is not their fault. Although they will experience a range of upsetting emotions, allowing them to have those feelings can help them process their grief.
Keeping them involved
People with a learning disability have as much right to go to the funeral as any other friend or family member, but it is their choice. If they’re not sure what happens at a funeral, explain it clearly so they can make a decision. If they do decide to go, involve them in the day by getting them to choose the flowers, for example, or any songs.
It’s also their choice whether they want to visit the person who died before the ceremony. Explain that some people like to do this so they can say goodbye to their loved one, but they don’t have to if they don’t want to. Help them prepare for the visit by telling them their friend or family member may look different in the coffin, especially if they had been ill before their death. Let them know that it’s OK to leave at any time if they feel uncomfortable – their loved one won’t be upset because a person doesn’t have any feelings after they die.
It’s also important to keep the person with a learning disability involved after the funeral. This gives them more opportunities to understand that the loss has happened and that it’s OK to remember the person who died. They could help choose a headstone, take part in a ceremony to scatter the ashes, or plant a tree somewhere they can easily visit.
They may also like to choose a special object, such as a watch, small painting, item of clothing or an ornament, to remind them of the person who died. Let them decide what they’d like to keep, and don’t get rid of any possessions before they have.
Remembering their loved one
The different ways people with learning disabilities will remember a loved one depends on their relationship with the person who died, the extent of their disability, and what they personally choose to do.
Ask them what they’d like or would feel comfortable doing. They may want to look at photos or create a memory box filled with pictures, cards and treasured keepsakes. Listening to a loved one’s favourite song or eating their favourite meal can also be helpful.
Visiting places that were important to both of them is a great idea, as is doing activities they enjoyed together, like gardening, painting or cooking. If the person with a learning disability is non-verbal or has difficulties communicating, they may want to draw pictures or create a photo collage of their loved one.
For those who find it difficult to express themselves, changes in behaviour – withdrawing, refusing to eat or getting angry – may also be signs of grief. It’s important to allow them to go through these emotions to help them process their grief. It’s also important to keep any routines the same, so they’re not dealing with too many changes at the same time.
Anyone who’s been bereaved may need extra support on special occasions such as Christmas or birthdays. Talk to the person with a learning disability to find out how they’re feeling and if they’d like to do something special on that day. This could be visiting the grave or writing their loved one a letter.
If the person doesn’t seem to be coping with their loss, or their grief looks like it’s having a serious impact on their daily life, such as not wanting to get out of bed, encourage them to talk to a counsellor, open up to friends and family, or make an appointment with their GP.
But don’t assume they need help or tell them what to do. Losing someone we love is one of the most painful – but also exceptionally personal – experiences any of us will go through.
Extra resources
- Marie Curie has an easy-read booklet on grief for people with learning disabilities.
- Mencap has a number of easy-read guides about bereavement, including advice for families and carers. You can also call their helpline, Mon to Fri, 10am to 3pm: 0808 808 1111.
- AtaLoss.org has advice on learning disabilities and bereavement, or you can contact their online counselling service, Grief Chat.
- We’ve also put together a guide with Cruse Bereavement Support on coping with grief and where to find extra help.
