Apathy and How To Deal
With It by
Dr Liz
Sammpson, Dementia Research Group
Apathy and how to
deal with it
Definition of apathy
The meaning of this word
has ancient roots-apathy is a term coined by the Greek Stoic
philosophers to refer to the condition of being free from emotions and
passions, such as fear, pain, desire, and pleasure. Nowadays the term
“apathy” (which is also known as a “negative” symptom) primarily
refers to a loss of motivation, interest, and concern and is amongst the
most commonly complained of symptoms in dementia.
Most research and
treatment is focussed on “positive” symptoms of dementia such as
aggression and violence. Studies of carers consistently show that apathy
causes more burden and stress than any of these behaviours. There are a
number of theories as to why this should be. Positive symptoms come and
go and sometimes the triggers can be predicted, patients show reactions
to their carer, even if sometimes these reactions are violent and
distressing.
Patients with apathy
tend to be withdrawn and unresponsive on a constant basis and may rarely
even acknowledge the presence or intervention of their carer. Apathy
paves the way for learned helplessness (the cycle where the sense of
failure to take action in day to day activities leads to a feeling of
not being in control and loss of ability which then leads to further
lack of activity) and thus feelings of hopelessness in both patient and
carer.
Causes of apathy
These are complex and are related to the underlying pathology and
atrophy of the frontal lobes, their connections to the temporal lobes
and the psychological consequences of this, both on the patient and the
carer. The frontal lobes act as the “motivator” of the brain,
causing us to plan, initiate and then carry through activities. Damage
to the frontal lobes not only takes away the “spark” needed for us
to decide what we are to do, but prevents us from being able to sequence
the task appropriately and see it through to the end.
Patients with Pick’s
disease are often unaware of the fact that they have these problems.
They lose confidence in their abilities and are unable to divert their
thoughts and interests to areas where they may actually still be quite
capable. The important feature of apathy is that it is easy to descend
into a downwards spiral of lack of activity, loss of confidence and
further loss of skills. This then further adds burden to the carer who
has to take over more of the tasks.
There is no medication
available to treat apathy and sedatives and neuroleptic medication which
are sometimes used to control behavioural problems in Pick’s disease
will actually make it worse.
What can we do about
it?
- Exclude the presence
of depression Clinical depression is rare in Pick’s disease and is
associated with the symptoms of tearfulness, poor appetite, sleep
and self esteem. It is easy to confuse clinical depression with
apathy but vital to distinguish between the two as this can be
treated with antidepressant medication
- Be creative! There
are no studies about the best way to manage apathy; most ideas have
come from carers themselves and sometimes, paradoxically from using
some of the other behavioural symptoms of Pick’s disease.
- Obsessions and
rigid patterns of behaviour are a common problem in Pick’s
disease. By establishing a routine such as a daily walk or trip
out, this can be capitalised upon- the apathy will be overcome
by the patients need to adhere to their daily schedule.
- Patients often
show “utilisation behaviour”- the need to pick up, explore
and use everything in their environment. This symptom can be
used by enriching the environment with picture books or
activities the patient enjoyed in the past such as knitting or
simple model making.
- Certain visual
and practical skills are retained in patients with Pick’s
disease. Many patients enjoy repetitive activities such as word
search puzzles and Jigsaws and are given confidence by their
ability to be able to complete these.
- Speak to other
carers and find out how they cope with apathy. There is helpful
information (some of which has been used in this article)
available from the Alzheimer’s society and the PDSG.
- Break tasks down into
manageable chunks This is a very powerful technique used by
psychologists. The person may be able to complete a task when it is
broken down into sections, even if they can’t follow the whole
procedure through. An example of this is getting dressed. Putting
the clothes out in the order they are put on may make it possible
for the person to continue to dress themselves. Achieving only one
or two steps of a task may give them a sense of achievement.
- Make eye contact
and give instructions slowly, clearly and one at a time.
Sometimes pointing or miming what you would like the patient to
do also reinforces the information.
- One of the
biggest problems experienced by patients with Pick’s disease
is initiating activities. By for example, gently holding a spade
with the patient and starting the digging off, they will be able
to carry on with the task.
- Try simpler tasks
for example, rather than asking the patient to “clean the
lounge” break the job up into “could you dust the shelves”
and then “ will you vacuum the floor”.
- It is said that
every night, Ronald Reagan’s security guards sprinkle a bag of
dead leaves on the swimming pool so that when he walks out the
next morning he can rake the water; a job the former president
enjoys and still obtains a sense of achievement from. The
security guard then puts the leaves back in a bag, ready to
throw on the pool again in the evening!
- Remain positive This
is so much easier said than done. There is a lot of evidence however
that patients with dementia can sense the mood (and frustrations) of
those around them -the more relaxed and positive you are the more
the patient will feel able to do.
- Try to encourage
the person with dementia to do whatever they can for themselves
and only offer as much help as is necessary. If they are
struggling with a task, avoid the temptation to take over
completely, even though it may seem easier and quicker. If you
need to offer assistance, try to do things with the person
rather than for them. The person will then be more likely to
feel involved.
- It is more
important that the person feels useful than that they complete
the task perfectly. Praise, encouragement and humour are much
more effective than criticism.
- Take up any
offers of a place at a day centre, offers of help from friends
or sitting services. This will stimulate the patient and engage
them in new activities.
- Sometimes the
disinhibition and socially inappropriate behaviour of patients
with Pick’s disease can prevent you from wanting to eat out or
go on trips. Sometimes a quiet word with the manager or waiter
can enable you to establish a regular visit or a table in the
corner or nearer the bathroom where you will feel able to relax
and enjoy your meal.
If you have any other
techniques that you have found useful for overcoming apathy, please
share them with us and other carers.
Dr Liz Sampson
Dementia Research Group
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