Till death us do part

When someone you care about dies, you feel distress and pain.
But the experience can be much more complicated for someone with
learning difficulties, who simply may not be able to grasp why they
can no longer see their mother, for example. Many people with
learning difficulties have spent years in long-stay institutions
and have had little familiarity with death. If a resident was ill
they would be moved to the institution’s sickbay; if it became
clear they were not going to recover, they remained there until
they died. Grief and bereavement were not something people with
learning difficulties experienced. Nowadays, as people live in more
integrated communities and live longer, death is something they are
more than likely to face, especially the death of parents.

A number of residents living in accommodation provided by
Anglo-Jewry charity Norwood came from long-stay institutions and
had never come into contact with the issue of death before. To help
them deal with death, Norwood appointed Michael Leven five years
ago as its cultural adviser. Part of his job is to ensure that if
the relative or friend of a resident dies, or if they themselves
are dying, they are dealt with in a culturally appropriate manner –
for example that funerals of Jewish residents take place, normally
within 48 hours of the death.

“The cultural and spiritual side of a person is very important,
especially for people with learning disabilities,” says Leven.
“They should not be robbed of a rich and rewarding part of their

When a person dies, some families do not want the individual told
by staff working with them. In effect, they try to protect them
from the truth because they cannot deal with the

David Lione, Norwood’s learning disability service manager, says:
“Families have told us that their own coping mechanisms are so low
that during a funeral they would not be able to support a person
with learning disabilities at the same time.”

Such an approach can hinder the individual’s ability to understand
what has happened or come to terms with their loss. And when they
are finally told, they may have delayed reactions.

Jackie Saunders, head of education at St Nicholas Hospice in Bury
St Edmunds, Suffolk, says: “If a bereaved person becomes withdrawn
or angry it is seen as acceptable, but if they have learning
disabilities this behaviour is seen as challenging and they might
be given medication. It becomes about modifying their behaviour
rather than appreciating that they are grieving.”

Saunders’s 10-bed hospice also addresses the needs of people with
learning difficulties who are ill or dying. Two years ago, the
hospice started running short courses for professionals working
with these clients on palliative care and how they dealt with loss
and bereavement. So far 80 people have completed the training and
the hospice now regularly supports people with learning

Saunders says the language people use about death – passed away,
croaked it, pushing up the daisies – confuses people with learning
difficulties, who find euphemisms difficult to understand. “Someone
who is a concrete rather than an abstract thinker will not
understand this.”

So what can social care professionals do to help these clients deal
with their grief? Lione recommends staff find out from the family
in advance how they want to approach bereavement when it happens.
“Sometimes your view is different from what the family wants for
the person.”

Learning difficulties services and specialist palliative care
services should work together, says Saunders, to meet their
clients’ dual needs. She adds that, to achieve this, both services
need to do more partnership work.

East Thames Care has seven registered homes and two sheltered
living projects in Essex for people with learning difficulties.
Learning disability service manager Janette Cuthbert has had to
break the news of a death to a person with learning difficulties 10
times in a 15-year career in social care. Each time she has
approached the subject as if she were talking to anyone else. Staff
who know the client well are best placed to provide continuing
bereavement support, she says, adding: “Don’t be afraid to talk
about it and ask them how they are feeling.”

‘Don’t bottle it up’   

Cliff Moss had known his wife Clare (pictured) for 16 years, and
been married to her for eight, when she died in May last year. She
was 38 and died from a brain tumour. They both knew she was dying.
When Clare died, Cliff says he felt sad and empty, and he still
misses her today. “She was nice to talk to. I liked being with her,
she was happy and smiley.” 

More than 200 people attended Clare’s funeral wearing red, her
favourite colour. Cliff had the song I Will Always Love
by Whitney Houston played during the service because Clare
liked it. “I was brave at the funeral, I had to be. Clare said if
she was in heaven then I shouldn’t be upset.” 

Cliff, who has learning difficulties, as did Clare, recently
held a barbecue with friends in a park to celebrate Clare’s life.
It wasn’t a significant anniversary, just something he wanted to
do. He also made a donation to Macmillan Cancer nurses. He plans to
have a bench with a plaque bearing Clare’s name put in the park’s
garden of rest. “It will be for people to sit on and think of

What helped Cliff deal with his grief was focusing on his work
at People First Swindon and his family’s support. 

He advises people who have experienced bereavement to talk about
their feelings to friends, family and colleagues. “Staff should not
be afraid to ask them about it. People should not bottle it

Tackling the stigma  

Last week a series of information leaflets were launched in the
North Staffordshire area to explain and ease the process of dealing
with death for people with learning difficulties. They were
developed over 18 months by 15 people with learning difficulties,
carers and social care professionals. One leaflet is aimed at
users, another at carers and a third for professionals. They are
free on request and a number of workshops will be held next
February to evaluate their usefulness. 

The group included Sue Read, a lecturer from the University of
Keele’s nursing department who based her PhD thesis on people with
learning difficulties’ experiences of bereavement counselling and
support. She says the leaflets were developed because “there is a
stigma around people with learning disabilities’ cognitive
abilities to understand difficult concepts such as death. In our
culture there is a double taboo of death and disability”.  

Read used to be involved with helping people with learning
difficulties cope with their grief through a North Staffordshire
scheme, Supportive Help Offering Understanding to People with
Learning Disabilities Experiencing Recent Loss and Bereavement

Read wants the government to issue national guidelines on what
users are entitled to. She says: “Valuing People did not talk about
bereavement at all. It was all about loss and change.” 

– For more information contact s.c.read@nur.keele.ac.uk

More from Community Care

Comments are closed.