Learning Disabilities and Bereavement
If you are caring for someone who has learning disability, they will need extra
support should they experience a major personal loss, such as bereavement. As
with most of us, such a loss will have an impact on their lives, and it is
important that it is handled sensitively. The extent of the impact of the loss
could be missed because of a limited ability to express feelings. They will need
help to express their feelings and emotions and to come to terms with their
loss. How we mourn will often depend on how close we were to the one who has
died. For the person with learning disability, the extent and expression of
grief will also relate to the extent of their dependence and their personality.
A past history of depression, or other losses can make someone particularly
Understandably, you may want to protect them from experiencing the pain of their
grief. However, it is important to recognise and acknowledge their feelings and
not underestimate their capacity to mourn. Clear communication, giving all the
available information and not concealing anything through fear of disturbed
behaviour is important.
If there are addition physical special needs or disability such as blindness,
lack of speech or paralysis, then they will be even more dependent on whoever is
caring for them. The death of the carer could mean that they may have to move
and be subjected to living in alien surroundings, with strange smells, textures,
lights, with strangers feeding them, hearing unfamiliar voices and being touched
by unknown hands.
There are several aspects of behaviour, which may be a pointer towards
unresolved grief. These include sudden changes in mood and behaviour. They may
be unable to speak of their loss without intense emotional reactions such as
crying or shouting, or other indications of anger, such as verbal or physical
aggression. The theme of loss may tend to recur frequently in conversation, and
minor events can trigger a fresh grief reaction. Some people may cling to the
possessions of the person they have lost and be distressed if they are taken
away. They may isolate themselves socially and stop joining in activities, which
they usually enjoy. They may show a personality change and develop depression,
anxiety, or lose touch with reality. Challenging behaviour in the form of verbal
or physical aggression, apathy or regression (like bedwetting, soiling, smearing
of faeces) can occur. Some symptoms of unresolved grief require specialist help.
These include self-injury, severe eating or sleeping problems or becoming mute.
Should you be concerned about such behaviour, then it would be wise to get some
S Be sensitive and supportive
H Be honest with yourself and the person with the learning disability
A Be aware of, and acknowledge and individualís emotions
R Respect the individualís wishes
- Try to communication clearly and honestly about the impending loss. It can be
hard to deal with your own painful emotions, and as a result it can be difficult
- If possible try to arrange visits to the dying person. This will allow some
preparation for the impending death and can help them start to come to terms
with their loss.
- When opportunities arise, try to encourage discussions about life and death.
The way a death is handled in TV soaps can prove a useful talking point in
helping someone to understand the meaning of loss and the painful emotions that
- Find out what they know or understand, and offer the opportunity for their
questions to be answered.
There are things that staff in day and residential settings should do in
addition to the recommendations listed above for families.
- Be aware when a resident is about to lose a loved one and try to anticipate
his or her reaction to the loss.
- Communicate clearly and truthfully with the resident about the impending
death, with the help and permission of the family.
- Recognise that people get attached to one another in group homes or at day
centres. Any impending loss of a friend should be communicated as soon as the
information is common knowledge.
- If staff are worried about a residentís ability to cope with bad news, seek
support from colleagues.
- Staff should be aware of their own feelings, and seek advice at an early stage
from colleagues. This will help staff who are supporting a resident who is
facing an impending loss.
- Bereavement and loss within a family is a very traumatic period for
everyone. A person with learning disability will sense this loss and the
- Communicate clearly and honestly about the loss of the loved one or any
other significant person in their life. Sometimes inappropriate links can be
made with a long-term problem and excessive pressure brought to change
behaviour, i.e. 'Now mum has died you must not wet your bed anymore'; or 'Now
mum has died, you must learn to feed yourself/dress yourself.' 'Now dad has
died, you must be the man of the house and help your mother'. These sorts of
pressures will add to their unhappiness and worries.
- Use clear language when giving the news of a loss. Try to avoid euphemisms
like 'He has gone to a better place', or 'She has gone to sleep'. This adds to
confusion and delays the mourning process. Be aware that they may think that
the disappearance of their loved one may be as a result of them being
- Do not withhold news of death for fear of difficulties in managing
emotional expressions of anger or sadness. Neither should the truth be
withheld because of a fear that they will not understand.
- Respect, comfort and listen. Encourage them to cry and to show appropriate
emotions openly. Like anyone else who is grieving, they will want to talk over
again and again about what has happened and how they feel.
- Do not try to jolly them along in an effort to make them feel better.
- If possible allow them to be involved from the very beginning when funeral
arrangements are made. If possible make arrangements for them to attend the
funeral and partake in the rituals. Being able to experience what happens; to
see other people showing emotions; to touch the coffin; take flowers and to
say goodbye can greatly help them mourn.
- If they are left alone in the family home by the death of the main carer,
try to support that person at home in the early stages of grief, even if he or
she will be resettling in new surroundings later. This can be achieved
by health and social services staff and relatives liaising closely. Helping a
person to stay on at home provides space and time to start the grieving
process in his or her own surroundings.
- Be aware of a grieving person's feelings at birthdays, Christmas or the
anniversary of a death. One way to respect and acknowledge these feelings is
by arranging visits to a cemetery or other place associated with the loved
- Watch for signs of delayed or prolonged mourning. If these signs are
detected, approach your general practitioner or social services. Unresolved
grief needs specialist help.
- If your husband, wife or partner dies and you are now caring alone for
someone with learning disability and experiencing difficulties approach your
GP. They can help in finding respite care, and/or day care tailored to the
needs of the family.
- There is a tendency for persons with learning disability to blame himself
or herself for the loss of the loved one. This may manifest itself in
depression, guilt, anger or problem behaviours. Be aware of this and
help them through by comforting them, listening and offering reassurance. If
you experience difficulties handling this situation approach professional or
staff at Day Centres.
- They may cling to other family members for fear of losing them after the
loss of a loved one. Be aware of this possibility and help the person to
express their feelings so that you can reassure them.
- Whenever possible, try to talk about the loss to the bereaved individual.
Photographs and videos and books like When Dad Died or When Mum Died are
extremely useful in helping people to express their emotions. Other methods
are making a life book and personal album using photographs, drawings and
- Helping someone who is grieving can pose a major problem when they have
multiple physical and sensory handicaps. Profound physical and sensory
disability may make it difficult for them to understand verbal explanations of
loss. Physical touch and cuddles can be extremely comforting. The touch
or smell of items, such as blankets, rings or watches used by the person who
died, may help to bring them back to mind and these should be made accessible.
- Follow all recommendations to the families in the previous section.
- Be aware of any sudden change in mood, behaviour, eating and sleeping habits.
These could all relate to grief reaction. If these symptoms are prolonged,
delayed or intense, contact professionals for advice and management.
- Try to arrange a group of fellow residents who have suffered a similar loss.
This may help them to express their feelings. Involve carers and friends in what
you are doing, as this will give them the opportunity to discuss any issues
raised between the group sessions.
- Arrange visits to the dead personís family on anniversaries and birthdays, or
invite family members in on these occasions. Encourage them to talk about the
- Be aware that mourning is not a brief process. It may take a long time for the
person with learning disability to work through feelings of loss.
- Try to maintain a normal lifestyle for the bereaved person during the mourning
process, as this helps to minimise feelings of loss.
This information has been adapted from ĎBereavement and Loss in People with
Learning Disabilitiesí from the Oxfordshire Learning Disability NHS Trust.
Written by Dr Raj Nagraj, MBBS, MRC Psych, DPM and Bala Moddia RGN RMN, RNMH,