Apathy in dementia: when the person stops wanting

Some residents are no trouble at all. They sit where they are placed, ask for nothing, complain about nothing, never get up. On a team short of time, it is easy to read that as calm. Often it is something else: the person has stopped wanting.

In dementia, this has a name. It is called apathy, and it is one of the most common and least discussed symptoms of the condition — precisely because it disturbs no one.

What apathy is, and what it is not

Apathy is a loss of motivation: of initiative, of interest, of emotional response. The person starts nothing on their own, shows no curiosity about what is going on around them and seems indifferent to things they used to enjoy. When someone suggests something, they sometimes join in; what is missing is the starting.

It is not the same as depression. The Alzheimer's Society describes apathy as a loss of motivation or drive, and distinguishes it from depression, where there is usually sadness, guilt, hopelessness or tearfulness. In apathy there is often no visible distress — there is absence. The two can occur together, and from the outside they can look alike: both bring withdrawal and less participation. That is why telling them apart is a job for whoever assesses, not for whoever observes in the corridor.

Nor is it laziness, unwillingness or “just how she is”. It is a symptom of the disease, linked to changes in the parts of the brain that help plan and start actions. Saying “she won't do anything” as if describing a choice is almost always unfair to the person.

How common it is

It is common. A meta-analysis by Zhao and colleagues, published in 2016 in the Journal of Affective Disorders and pooling 48 studies of neuropsychiatric symptoms in Alzheimer's disease, found apathy to be the most frequent symptom, with a pooled prevalence of around 49% — ahead of depression, aggression and anxiety.

The figure deserves careful reading: the studies used different instruments and included people at different stages, and prevalence varies a great deal with that. In other types of dementia, such as frontotemporal dementia, the ranges reported in the literature are higher still. The practical reading does not change: in a care home lounge or a day centre, several people are likely to be at this point. The differences between types of dementia are covered in types of dementia: what changes in a session.

Why it wears carers down

Apathy makes no noise, but it weighs. For three reasons.

It looks like rejection. The son who visits and gets no smile, the activities coordinator who prepares something and gets no response. The temptation is to take it personally, and then to stop trying.

It drags the team down too. Offering with nothing coming back, day after day, is draining. After a few weeks it is common for the apathetic person to stop being invited — and the apathy then belongs to the setting as well.

It causes conflict in families. Those far away see “Mum just sitting there” and think the home does nothing; those close by know how many times it has been tried. Naming the symptom helps both sides talk about the same thing.

What tends to help

There is no trick, and nothing below guarantees a response. But there is a way of offering that usually works better than another.

• Invite rather than ask “would you like to?”. The question “do you want to come?” asks for exactly what the person lacks: the decision to start. “Come with me to see the garden” or “Help me fold these” take the first step for them, and still leave room to say no.
• Start small. Five or ten minutes with a beginning, a middle and an end. A short activity that goes well is worth more than a long one that drags.
• Choose by who the person was. The seamstress, the fisherman, the primary school teacher, the man who kept the vegetable plot. Activities tied to someone's life story have a better chance of stirring something than generic ones. The free Life story tool helps gather those themes and places with the family.
• Do it alongside, don't ask them to do it. Start the task and leave room for the person to come in. Often the hand follows someone else's hand before the will appears.
• Routine, same time. A predictable structure takes away the effort of deciding. The Alzheimer's Society recommends exactly that: a simple daily routine and activities the person can do and finds meaningful.
• Value taking part, not the result. Thank them, comment, come back to it later. Don't correct what was “done wrong”.
• Write down what worked. Which activity, what time, with whom. That way the next shift does not start from zero.

The criteria for choosing a meaningful activity for each person are set out in how a scene is chosen.

When to talk to the doctor

Apathy is part of dementia, but not every loss of initiative is the disease's apathy. It is worth asking for a medical assessment when:

• the change was fast, over days or a few weeks — there may be an infection, delirium, dehydration or another acute cause;
• there are signs of sadness, crying, guilt, phrases like “I'm no use to anyone” — it may be depression, which is assessed and treated differently;
• medication changed recently, especially anything that causes drowsiness;
• there is pain the person can no longer put into words, or uncorrected loss of sight or hearing;
• they have stopped eating or drinking as before.

The Alzheimer's Society also notes that there is little evidence that antidepressants help apathy in dementia, which makes the distinction between the two even more important. In Portugal, families can call SNS 24 (808 24 24 24) for advice, and Alzheimer Portugal offers support for carers. In an emergency, call 112.

Where RVer can fit in, and where it cannot

RVer does not treat apathy and does not promise that anyone will start wanting again. What it can offer is an invitation: a recognisable place — the beach where the person spent their holidays, the village, the church, Fátima — that gives the conversation a starting point without asking them to decide anything. The professional alongside does the rest: comments, asks about what is on screen, listens.

Sometimes the person talks about a place they had not mentioned in months. Sometimes they look for a few minutes and say nothing, and that is also a response worth recording. Sessions are short, always accompanied, and stop whenever the person wants — including if they never want to start. What to do when the answer is no is in when a resident says no, and the thinking behind familiar places in reminiscence.

In summary

• Apathy is a loss of motivation and initiative; it is not depression, laziness or a choice.
• It is one of the most common symptoms of dementia — in a 2016 meta-analysis, around half of people with Alzheimer's.
• It wears teams and families down because it looks like rejection; naming it helps.
• Inviting works better than asking “would you like to?”, as do starting small and choosing by life story.
• Fast changes, sadness, pain or new medication call for a medical assessment.
• Technology can be an invitation to talk, never a promise of effect.

This article is for information only and does not replace clinical assessment. If you notice a change in behaviour in someone with dementia, speak to their doctor or care team.

RVer is a virtual reality system for clinical use designed for healthcare settings, whose base product is registered as a Class I Medical Device in EUDAMED (Basic UDI-DI 56006195127RVERTZ) and with INFARMED (Portugal, CDM 94571546) and bears the CE mark under MDR 2017/745. The RVer Motion, RVer Neuro and RVer Exposure modules are in development and are not covered by that registration.