Mental Health
Over the past 12 months we have seen an increase in
enquiries regarding mental health in adults with Down
syndrome. We see this as a very positive change as
it indicates that people are becoming more aware
about the importance of supporting mental wellness
for our adults. It also suggests that there is movement
away from the out-dated view that ‘it’s just the Down
syndrome’. This article was initially planned in order to
provide information about some of the more common
mental health issues seen in adults with Down
syndrome, however it has become clear that there is
also a need to highlight the factors that can promote
good mental health.
Figure 1
It is important for us to take a holistic view when
looking at the promotion of mental wellness. This is the
recognition that mental health isn’t just about the way
we think and feel but a combination of factors including
our physical health, social health, and the ability to
communicate with those around us.
Physical health should always be investigated when
considering changes to the behaviour or moods of an
adult with Down syndrome. It isn’t uncommon to hear
stories of sudden mood changes – a usually bright and
bubbly person becoming miserable and withdrawn,
refusal to participate in loved activities, etc. – whereby
on medical investigation it is found that the person
was suffering from a long-standing ear or urinary tract
infection. Quite often this comes down to an inability
to communicate the changes or the pain to the people
around them, so behaviour becomes their form of
communication. Families and support staff should
monitor these behaviours and look for even small signs
that the adult with Down syndrome is experiencing pain
or illness.
A person who has developed osteoarthritis in their
hip may wince or grimace as they walk, for example,
or someone who has experienced changes to their
vision may constantly rub their eyes. Whatever the
change may be the first thing we must consider is
‘what is this behaviour telling us?’ The Department of
Communities (Disability and Community Care Services)
and the Department of Community Safety (Queensland
Ambulance Service) have developed a fantastic visual
support that may be helpful for use in the home setting.
The ‘communication board for an emergency medical
situation’ (see figure 1) allows a person to use symbols
to indicate where they feel sick or in pain, the level of
pain and other important information. You can contact
us for details about where to get a copy of this resource.
There are a number of health issues associated with
adults with Down syndrome that may have a direct
impact on mental health. Hypothyroidism (underactive
thyroid), for example, occurs in up to 52% of adults with
Down syndrome. The symptoms of hypothyroidism
include lethargy and a depressed mood.
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In a person who has depression, this form of thyroid
dysfunction may contribute to the exacerbation of the
condition. In this case it may be necessary to treat both
the thyroid condition and the depression. Sometimes,
however, treatment for the thyroid dysfunction can
be enough for depression to improve. Other medical
conditions that can directly impact mental health in
adults with Down syndrome include sleep apnea (due
to inadequate sleep cycles and oxygen deprivation)
and celiac disease (as a result of vitamin and mineral
deficiencies and symptoms including fatigue and a
sense of ill health).
Social health is an area that is often not considered
when looking at changes in the behaviour of an
adult with Down syndrome, but its influence can be
enormous. An adult with Down syndrome should have
social opportunities, interest and hobbies, and the
chance to participate in recreational activities. They
should be supported and encouraged to make friends
(both with and without disabilities) who share similar
interests. They should spend their days participating
in meaningful, stimulating, age-appropriate activities be it work, education or some other form of personal
development. The absence of these factors can result
in a sense of social isolation that can have a remarkable
impact on mental wellbeing. It is our interactions, with
a variety of people and our participation in activities we
enjoy that allow us to feel a sense of fulfilment in our
lives.
You have heard this from me before, but it is especially
significant when looking at the promotion of mental
wellness: adults with Down syndrome need to have
the personal power of making choices. It’s about the
person feeling valued and respected as an adult, and
it’s also about them having the confidence and selfesteem to trust that they are able to make the choice
that is best for them. Self-esteem is important and
choice is just one way of promoting it. Acknowledge
the person’s skills and talents (without gushing or
faking it – they’ll know!), expose them to a wide range
of experiences so that they can find a variety of things
they enjoy and are good at, and encourage them to
push themselves and develop new skills but don’t have
unrealistic expectations or set them up to fail.
Mental Health Cont...
Even the language you use can promote good selfesteem. Next time an adult with Down syndrome does
something great, rather than saying “I’m so proud of
you”, why not try “You should be so proud of yourself.”
Psychosocial factors are also to be considered.
That is, how does a person with Down syndrome
psychologically cope or respond to events within their
social environment.
There is anecdotal evidence to suggest that it can
be common for adults with Down syndrome to react
disproportionately to what could be considered ordinary
events. Events such as the death of a pet or a sibling
moving away from home, for example, would elicit an
emotional response in most people, however in an adult
with Down syndrome that response may seem extreme
and may last much longer. There’s no real evidence
to suggest why this appears to be the case in some
situations, however it is important to recognise that it
is a possibility and to prepare to best support the adult
with Down syndrome should these situations occur.
Communication can be a difficult area for a number
of adults with Down syndrome. Some people with
Down syndrome have difficulty with clear verbal
communication which limits their ability to verbally
express their feelings. Others who do successfully use
verbal communication may struggle with the abstract
nature of emotion and may find it difficult to locate the
language needed to clearly explain themselves.
It is important to equip ourselves with a range of
techniques to allow the person to express their feelings.
Often the use of signs and symbols is useful, or using a
collection of photographs of different facial expressions
so that the person can show you how they feel. Art
can be another opportunity for the adult with Down
syndrome to show you a visual representation of their
feelings.
The reality is that even when we do everything we
can to promote mental wellness, some people with
Down syndrome will experience mental health issues.
Research on mental health conditions and people
with intellectual impairment (including but not limited
to people with Down syndrome) has shown that there
is about 2.5 times greater chance of occurrence.
Shockingly, only around 10% of people with intellectual
impairment and a mental health condition are receiving
treatment for it.
The most commonly occurring mental health condition
in adults with Down syndrome is depression. The
following information will look at what depression is, it’s
symptoms, and possible treatments.
Please note that this is just an overview and we
recommend that you speak with your healthcare
provider if you would like more information.
Depression is a primary mood disorder that occurs
quite commonly, in people with and without Down
syndrome, and is treatable. It’s different to just feeling
sad or down due to its ongoing nature – a major
depressive episode lasts at least two weeks. It has
a range of possible causes and contributing factors
including medical and social factors as previously
discussed, stress (from personal loss, environmental
changes etc) and biochemical changes (a decrease in
the production of a neurotransmitter called serotonin).
The symptoms of depression can include:
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Changes to mood: unhappy, sad, miserable
Loss of enjoyment and interest
Irritability
Withdrawal
Participation refusal
Diminished self-care skills
Sleep disturbances
Decreased appetite
Dr. Jennifer Torr, Director of Mental Health at the Centre
for Developmental Disability Health Victoria, developed
the ‘Depression in Adults with Intellectual Disability
Checklist for Carers’. This checklist is intended to be
completed by a family member or paid carer prior to
an appointment with the persons GP. Its main purpose
is to provide the necessary information for the doctor
when the adult with an intellectual impairment is not
able to self-report. DSAQ has permission to distribute
copies of this checklist so contact us if you would like
a copy.
Treatment for depression in adults with Down syndrome
can include a range of options including:
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Identifying and reducing stress
Counseling
Encouraging social health
Treatment for associated medical conditions
Medication
The treatment requirements will vary between
individuals and their particular circumstances and often
a combination of methods will be used at one time.
Ultimately the goal is to support our adults with Down
syndrome towards good mental health and wellbeing
so that they can continue to lead productive and fulfilling
lives. If you have concerns about the mental wellbeing
of a person with Down syndrome we encourage you,
and the individual, to speak to their health care provider
for further information.
Please feel free to contact Rachel Carr, Information and
Support Coordinator, if you have any questions. You
can also request a copy of the ‘Depression in Adults
with Intellectual Disability Checklist for Carers’ or the
‘communication board for an emergency medical
situation’ by calling Rachel on (07) 3356 6655 or by
email at [email protected]
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