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Patients with apathy tend to be withdrawn and unresponsive on a constant basis and may rarely even acknowledge the presence or intervention of their carer.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.
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.
1. 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
2. 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.
3. 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.
4. 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.
If you have any other techniques that you have found useful for overcoming apathy, please share them with us and other carers.