Dr Liz Sampson, Dementia Research Group
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Patients with apathy tend to be withdrawn and unresponsive on a constant basis and may rarely even acknowledge the presence or intervention of their carer.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?
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.
- 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.
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.
- 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!
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.
- 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.