Introduction
Some people have special difficulty in learning to talk, look
after themselves and in coping with schooling and preparation for
adult life. This disability, once called mental handicap or
retardation, is now known as learning difficulty or disability. The
disability can be quite mild or so severe that independent life is
impossible.
Many people will get depressed at some time in their lives,
including people with learning disability. Bereavement,
disappointment, stress, or illness are some possible causes, but
depression may also occur for no apparent reason. Generally periods
of depression are short but sometimes they last much longer, when
special help is needed.
Because depression is so common, it is usually easy
to spot. As well as obvious feelings of sadness or misery, symptoms
may include a loss of interest in previously enjoyed activities,
agitation and restlessness, disturbances of eating and sleeping,
lack of motivation and a loss of self confidence and self esteem.
People who are depressed may be able to talk about their feelings
to their family, friends or workmates, and to their GP. Talking is
an important part of getting better.
The problem for many people with learning disabilities is that
they are not able to express their feelings easily in words. So
their actions may have to speak for them. Sudden changes in
behaviour or mood, or not being able to do things they could
previously do may all be important signs of depression. These
changes in behaviour are often mistakenly viewed as just a phase,
and so the right help may not be given. Unfortunately, it can be
all too easy to forget that people with learning disabilities have
feelings, too.
In this leaflet we suggest ways in which depression in people
with learning disability can be better recognised, and how they can
be helped.
How do you recognise depression?
Feeling low or sad is not the only sign of depressive illness.
Other common symptoms include:
- less interest in activities which are usually enjoyed.
- feeling tired all the time.
- no get up and go.
- eating too little or too much.
- losing weight.
- inability to sleep or waking up too early.
- sleeping all the time.
- avoiding other people.
- inability to relax or restlessness.
- being snappy and irritable.
- feeling bad or guilty, or worthless.
- loss of confidence.
- thinking life isn't worth living.
People with learning disabilities are just as likely to get
depressed as other people. But the way they show it can sometimes
be different from the picture painted above, especially when there
are communication problems. Other signs to look out for are:
- sudden or gradual changes in usual behaviour.
- seeking reassurance.
- loss of skills.
- loss of bowel or bladder control.
- loss of ability to communicate.
- outbursts of anger, destructiveness or self harm.
- physical illness.
- complaining about aches and pains.
- wandering or searching.
Some people's stories
Derek was a 33 year old man with autism. He
was doing well at his local Social Education Centre but then, over
a few weeks, one of the other students died suddenly of a heart
attack, new students arrived and his favourite tutor left. Derek
never mentioned these events but he gradually became more and more
withdrawn. He didn't want to be touched and became very upset if
anyone came near him. His activities at the Centre were disrupted
and he could no longer travel there on the bus. Derek also stopped
taking part in his local church activities which he had done for
years. He lost weight, became anxious and afraid, would not speak
and took hours to finish even simple tasks.
Sandra had severe learning and
communication difficulties. She lived alone with her mother until
she was 45, when her mother had a stroke and could no longer care
for her. As Sandra had always been a quiet, placid person, she was
moved to a small group home run by Social Services. At first she
showed no signs of being upset, although she would sometimes pull
her own hair. This problem gradually got much worse until she had
almost no hair left. Sandra then started to pick at spots and
scratches on her skin until they became badly infected. When very
upset she would scream and bang her head, and it was almost
impossible to comfort her. Staff in the home just thought this was
attention seeking behaviour and that the best thing to do was to
ignore it. This had no effect and the problems grew worse.
Jane left home to go to College when she was
19. She had Down's syndrome and had done very well at her school
for children with severe learning disability. Within 4 months she
had stopped speaking, become very withdrawn and obviously unhappy.
Her parents took her away assuming that something bad must have
happened at College. Instead of cheering up Jane became quite
aggressive. After breaking several cupboards in her bedroom one
day, she was admitted to hospital. It took the psychiatrist some
time to get to the bottom of Jane's depression. It turned out that
her mother's sister Sarah had died 2 days before Jane's first
weekend home from College. Her aunt had been like a grandmother to
Jane and had even looked after her as a baby because of her
mother's postnatal depression. Jane went back to College at the end
of the weekend with the barest mention that Sarah had gone to
heaven. She was not involved in the funeral, and no-one mentioned
Sarah's name again in Jane's presence.
Paul was 22 when his younger brother, Mark,
left home to go to university. Later the same year his older sister
got married and moved away from the neighbourhood. Life at home was
very different for Paul and his parents. He missed the
companionship of his brother and the regular visits of his friends.
His brother always stood up for Paul, and Paul's own social
activities had relied considerably on Mark's support. Paul began to
wet the bed regularly, and one day he smeared faeces on the
bathroom wall. One day he got lost on the way home from his
part-time job. His mother was so worried about him that she went to
talk to Paul's GP about him and he referred him to the Specialist
Community Learning Disability Service.
Causes
People looking after someone with learning disability who is
depressed usually want to know why. The reasons differ from one
person to the next, and often there is more than one cause.
Loss
Although depression sometimes strikes out of the blue, it is
often triggered by some unhappy event such as a bereavement, or a
favourite carer leaving. These events affect most people with
learning disability at some time, although not everyone gets
depressed. Sometimes one loss can then lead on to other major
changes. For example, after parents have died, people with learning
disability are often moved to emergency residential care. This
means they lose their home, their familiar possessions and
routines, as well as their parent and carer.
Many people with learning disability find change difficult to
cope with. Routine can be important but often other people make
decisions which affect their lives without any warning or any
personal choice or control.
Usually people can work through their feelings about an
unhappy event and come to terms with it. People with learning
disability will probably need help to do this. Sometimes a more
serious and persistent depression develops. This is a particular
risk for people with learning disability because carers often miss
the early signs of depression.
Health problems
Physical illness or simply the presence of a long term
disability may trigger depression. Often it is a combination of
illnesses which take their toll over a number of years. Although
this may make the depression more understandable, it doesn't mean
that treating any associated depression is a waste of time!
Sometimes depression may be provoked by the body's chemistry
being affected by a physical illness such as an underactive thyroid
gland. Sometimes drugs prescribed to treat another condition can
make a person depressed. The GP is well placed to check these
things out.
Abuse
People with learning disability are at risk of being neglected
and physically or sexually abused, because they cannot easily
protect themselves, or may not be able to tell other people what
has happened. Abuse may lead to depression.
Other factors related to depression
Personality may play a part in depression with some people
seeming to be more vulnerable than others, perhaps because of the
way they were raised or because they were born with a depressive
tendency. Generally speaking, women get depressed more often than
men. Hormones probably play a part, as with monthly mood changes
before each period. Some people who get depressed will also have
times when they are elated and overactive. This form of depression,
known as manic depression, tends to run in families.
Getting help
First you have to be aware that your friend or relative may be
depressed. The time to get help is when any changes in behaviour,
withdrawal or gloom have gone on for some weeks. Then you should
seek professional help. Most family doctors are quite used to
dealing with emotional problems. But very few family doctors will
have had training in how to recognise depression in people with
learning disabilities. So don't forget that you are the expert when
it comes to telling the doctor about the changes you have noticed
in the person you are worried about. You may have to explain that
the depression is not part of the condition which caused the
learning disability, but is something new and different.
The doctor will probably appreciate your being present to help
explain what has been happening. It may be necessary for a
psychiatrist who has special training in working with people with
learning disability to be consulted.
In severe depression, most people feel that life is not worth
living. Thoughts or actions suggesting that people may want to harm
or even kill themselves should always be taken seriously - they
mean help is definitely needed. However, changes in mood or
behaviour may be caused by problems other than depression, so it is
wise to have a careful health check by the GP, before deciding that
any changes are due to depression. Physical illness and chronic
pain are themselves causes of depression in some people with
learning disabilities, and both physical as well as emotional
illness will need attention.
Prevention
Bereavement or other major changes in life are probably the
most common causes of depression. Although it is not possible to
protect people with learning disability from events of this
kind,
proper preparation and explanation can help to
prevent them becoming too distressed. Moving from home to live in
the community, separation from families, siblings leaving home, the
loss of a favourite care worker, the need to adapt to frequent
staff changes or the moves of other residents, are familiar
experiences for people with learning disability. Often, greater
stability could be achieved through better planning or organisation
of resources, to make as few changes as possible. If this is not
possible, more attention to explaining (in whatever way is most
suitable) why, what, when, or where changes will take place, and
who they will involve, can greatly reduce stress and anxiety.
Helping people to express their worries and feelings, at the level
that suits them best, can also help to reduce, or even avoid many
problems.
Treatment
Psychological Approaches
Psychological approaches play an important role in the
treatment of anyone who is depressed. The opportunity to talk about
problems, and finding practical ways of dealing with them, are
essential parts of treatment. Counselling and psychotherapy can be
very successful with people with learning disability too, as long
as they are adapted to their levels of communication and
understanding.
Books, photographs, pictures or drawings, for
example, may help them to understand or explain their feelings
better than words alone can do. Sometimes, people with severe
learning and communication disability cannot be helped in this way.
Instead treatment may need to concentrate on changing the people or
the surroundings where they are living. For example, Jane got much
better after a family meeting in which her aunt's death was
discussed and to which her parents brought some photographs of
Sarah (Jane's aunt). She needed some bereavement counselling but
gradually began to enjoy a more ordinary life. Paul slowly improved
after it emerged that he had got lost looking for his sister's new
house. With the support and understanding of his family, he was
helped to develop a new circle of friends who enjoyed similar
leisure activities to himself. With the help of local learning
disability services, he and his family began to explore how he
could leave home too, and the support he would need. Psychological
approaches need not rule out other methods, such as medical
treatment. There is no point in trying to do without drugs if they
are needed.
Drug Treatment
When depression is severe, for example when there is loss of
weight and poor sleep, an anti-depressant antidepressant drug will
be needed. The doctor who prescribes the anti-depressant drug will
warn the person with learning disability or carer about common side
effects such as a dry mouth or feeling a bit drowsy or dizzy. The
doctor will also want to know about any other medications,
including any from the chemist, that are already being taken.
Anti-depressants can take up to 4 weeks to have their full effect.
They should be taken for at least 4 to 6 months after the
depression has lifted, for it may reappear if the tablets are
stopped too soon. The prescribing doctor, usually the GP, will see
how the treatment is going with regular appointments and will
advise on when to stop the tablets. Please see our leaflet on
antidepressants for more
information.
Social Support
Loneliness or lack of anything interesting to do during the
day may be a cause of depression, or can make depression worse.
Help from Social Services, voluntary organisations, parent groups
and other support groups will be needed to deal with such
problems.
Derek became much less distressed and anxious after
being given anti-depressant medication, but he still remained very
resistant to being approached by anyone. A special programme was
developed to help him gradually tolerate the presence of other
people. For Sandra, after anti-depressant medication had
successfully reduced her general distress, a more stimulating daily
programme in her residential home, reduced the amount of hair
pulling and picking. Opportunities for greater contact with her
mother were also supported.
Getting better and staying well
The cases of Derek, Sandra, Paul and Jane show how as well as
medical help, attention to other aspects of daily life are needed
if progress is to continue. The quality of life for many people
with learning disability is often limited and unstimulating. They
may only receive the attention they need when their behaviour gives
rise for concern. If their emotional and practical needs are not
then met, such problems are likely to re-emerge. So any treatment
must also focus on ways of improving the general quality of their
lives.
Problems
Although depression in people with learning disability can
usually be treated successfully, it is not always possible to get
back all the skills that have been lost, especially if the illness
has lasted a long time. Some people may get into a pattern of doing
less, or of avoiding certain activities. Too much pressure to
return to how things used to be will not help them. Derek, for
example, had been severely depressed for almost 2 years before he
received the right sort of treatment, and during this time, he had
almost completely stopped talking. Although he then made good
progress, he has never gone back to talking in the way he used to.
Attempts to make him talk just made him very anxious again but he
now communicates willingly in writing instead. For Paul, life could
never be the same without his brother and sister at home. His
supporters needed to help him make the transition from adolescence
to adulthood.
What can you do to help depressed people?
DO ask for help. It's not normal for
someone to feel depressed just because they have a
disability.
DO be patient and remember that depression is
an illness, and that most people get better.
DO make sure they keep taking any tablets
they are on, but watch out for any side effects and report these to
the doctor or nurse immediately.
DO listen to how they feel, and if they are
having counselling, help them to keep their appointment.
DO encourage eating and drinking properly -
the right nourishment and enough of it. People with depression
often lose weight.
DO encourage going out and joining in
activities they have previously enjoyed, but don't bully them into
doing things.
DON'T forget your own needs - it can be very
wearing living with a depressed person. Talking to other carers can
be helpful, as can having regular breaks.
DON'T think depression is a slur on the
family or on your care. Be clear that it is not a form of
madness.
DON'T make decisions about a change of home
when someone is depressed. It's much harder to cope with a move at
such a time.
If your doctor suggests ways in which you might help to deal
with some of the problems, do try to carry these out.
Organisations that can help
Tel: 0845 3 55 55 77 (Mon-Fri, 10.30-2.30pm)
Afasic is the UK charity, established in 1968, to help
children and young adults affected by the hidden disability of
speech, language and communication impairments, their families and
the professionals working with them.
Tel: 0808 808 7777 (Weds and Thurs
10am-12pm, and 2pm-4pm)
info@carersuk.org
To help anyone who is caring for a sick, disabled or elderly frail
friend or relative at home.
Tel: 0113 243 0202
changepeople@btconnect.com.
CHANGE is a national rights organisation led by disabled
people. We campaign for equal rights for all people with
learning disabilities. We raise awareness of the
issues.
Tel: 0870 167 1677
helpline@crusebereavementcare.org.uk
Offers a service of counselling, advice and opportunities for
social contact to all bereaved people. Information on the grieving
process, and how to help children grieve are included.
Tel: 0845 230 0372
info@downs-syndrome.org.uk
The Down's Syndrome Association is a membership led and driven
organisation, open to anyone who wishes to join. Full membership
which confers voting rights, is open to parents, adults with Down's
syndrome and their carers.
Tel: 020 754 0454
Mencap is the UK's leading learning disability charity working
with people with a learning disability and their families and
carers.
Helpline 0845 070 4004
autismhelpline@nas.org.uk
Exists for the provision of support for children with autism and
their carers. Aim is to encourage a better understanding of autism
and to pioneer specialist services for people with autism and those
who care for them.
MIND
Tel: 0845 766 0163
contact@mind.org.uk
Provides information and advocacy services for people with mental
health problems. Frequently asked questions on both mental health
and legal matters are available. Also information on the MIND CHI
project to evaluate mental health care in the NHS.
Tel: 02920 39 51 23
Tel: 08457 90 90 90
jo@samaritans.org
National organisation offering support to those in distress who
feel suicidal or despairing and need someone to talk to. Samaritans
have 204 branches around the country open 24 hours a day, every day
of the year. The telephone number of your local branch can be found
in the telephone directory.
Further reading
Feeling Blue, When Mum Died or
When Dad Died, When Somebody Dies by S. Hollins
& L. Sireling (2004) 3rd Edition.
Books Beyond Words, The Royal College of
Psychiatrists.
Skallagrigg
by W. Horwood (1988)
Penguin.
Am I Allowed to Cry? - Study of
Bereavement amongst People who have Learning Difficulties
by M. Oswin (1991) Souvenir Press.
This leaflet was produced by the Royal College of
Psychiatrists' Public Education Editorial Board with the help
of an educational grant from The Down's Syndrome Association
Series Editor: Dr Philip Timms
Expert Author: Professor Sheila Hollins
Last update: July 2006
© July 2006 Royal College of Psychiatrists.
This leaflet may be downloaded, printed out, photocopied and
distributed free of charge as long as the Royal College of
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