Apathy and dementia

Apathy in dementia is a loss of motivation or drive. A person may need a lot of encouragement just to do seemingly small things. Without this support they may well do nothing. 

Some people describe apathy as appearing to ‘give up’ or withdrawing into a shell. It can be very hard to witness as it may feel like losing the person. It can also be difficult to support someone who doesn’t appear to care what happens to them, who doesn’t smile or laugh, or seem to have feelings about other people.

Most people with dementia will develop apathy – particularly during the later stage of the condition. The timing and nature of apathy may differ depending on the type of dementia. 

I don’t worry about it, just…sit here. That’s all you can do. She says I don’t do nothing, I’m sat here all day. But what else can I do?

What causes apathy in a person with dementia?

There are several reasons why a person with dementia might develop apathy. A very common reason is that it develops gradually as an emotional response to the difficulties of living with dementia.

Dementia can make many things much harder to do. Simple, everyday activities that used to be easy need a lot more effort and patience and often things go wrong. This can be very upsetting and can knock a person’s confidence. They may feel ashamed, or even that they are embarrassing others.

For many people, the natural reaction to these negative feelings is to stop trying to do things and allow others to do them instead. While this may feel safer and less stressful, it can end up causing the person to become increasingly isolated from other people and the activities they used to enjoy. They may need a lot of support and encouragement to prevent this from happening. 

For some people with dementia, apathy may be caused by damage to certain parts of the brain involved in motivation. Almost everything we do is driven by decisions about effort and reward. If something is thought to be ‘worth the effort’, this provides motivation which then drives action. 

However, when these thought processes stop working properly, the person may not be motivated to act or get started with a task. For some people, if they do manage to get started, they may struggle to keep going or become overwhelmed as they forget what they were doing and give up.

Apathy like this tends to happen more often during the later stage of dementia, although it can happen much earlier in certain types of dementia, such as dementia with Lewy bodies (DLB), Parkinson’s disease dementia and frontotemporal dementia (FTD).

Symptoms of apathy

A person with dementia who has apathy will be less motivated to do things. They may:

• sit for long periods without appearing to do anything
• rely on other people to suggest and organise activities
• be less interested in joining conversations or talking to new people
• not be worried about their own problems
• have unemotional responses to news or personal events – they may seem to be uninterested or detached
• have no energy or motivation to do routine or daily tasks, such as brushing their teeth or having a shower
• sleep a lot during the day.

Some of these symptoms overlap with those of depression, such as losing interest in things and lacking energy. This is why it can be hard to know whether a person has depression or apathy, even for a doctor. The main difference between the two conditions is that depression involves more negative feelings, such as sadness or guilt.

A person with apathy may not be worried by their symptoms. However, it can reduce their quality of life if they are less able to do things that are enjoyable or fulfilling.

Treatment for apathy

Apathy is very difficult to treat with medicines or talking therapies. It is generally thought that the most helpful approach is to support a person to stay as active as possible and help them to keep their confidence levels up. 

This means creating safe spaces where they can try new activities or talk to people without worrying about getting things wrong, and where their dementia is not something to be ashamed of. Even if they find it difficult to take an active role in these activities, they can still benefit from being involved.

Activities designed for people with dementia can be great ways of achieving this – for example, a local Singing for the Brain group or dementia café. These tend to be advertised in local newspapers or parish newsletters. You can also contact your local dementia adviser or adult social services to find out what is available in your area, or visit our Dementia Directory.

There are also various types of structured therapy that are delivered by a trained professional, such as music therapy, group art therapy, reminiscence and cognitive stimulation. However, these therapies are not available everywhere. 

A person with apathy may also be offered an antidepressant medicine. However, there isn’t much evidence that these medicines help people with apathy who have Alzheimer’s disease, mixed dementia or vascular dementia. In fact, there is some evidence that these medications may make apathy worse.

My husband was 52 when he was diagnosed with Alzheimer’s and experienced many of the symptoms of depression merging into apathy. Not everyone wants to be ‘organised’ into activities, this depends very much on the nature of the person. An individual companion worked well for him.

Tips for supporting a person with dementia who has apathy
 

Try to find tasks and activities they will enjoy and find meaningful

• Have a basic daily routine to provide a reassuring structure to each day.
• Have a weekly routine with a few activities that suit the person’s preferences and personality. This could be a group session or simply visiting the park and seeing grandchildren.  
• Identify activities that the person has a realistic chance of actively contributing to and feeling in control. This will help to rebuild their confidence.

Create a safe space where they are free to get things wrong

• Local dementia support groups provide a place where dementia symptoms are accepted and understood, and where no one should have to worry about embarrassing themselves or others.
• Try to apply these principles to home life by not getting angry or upset when mistakes happen.

Break tasks down into simple steps

• Several small steps is easier than trying to do lots of things at once.
• Maintaining simple, everyday skills can help bring a sense of achievement and improve self-esteem.

Don’t blame the person for being ‘lazy’, unhelpful or uncaring

• Apathy is not a conscious choice.
• If you feel frustrated, try to remain as calm as you can.

Be patient and provide encouragement to keep going

• It can be tempting to take over or do a task for someone who is struggling. While this may get things done more quickly, it can also knock their confidence and over time, they may lose important skills.
• Be positive and focus on what they achieve, not on what they can’t do.

Focus on listening and understanding

• An important part of your support is being able to understand the needs of the person with dementia and communicating with them as effectively as possible.

Apathy can also put a strain on family and friends who are trying to help and support them. It can be hard to care for someone every day who doesn’t seem to mind what happens to them, or those around them.