Antipsychotics in dementia: why guidelines ask for non-drug approaches first

First, the essential point: decisions about medication belong to the medical team. This article is not for deciding whether anyone should take, reduce or stop an antipsychotic. Nobody should stop or change medication on their own. It is here to explain why international clinical guidelines ask that, in dementia, care starts from a different place, and what that means for those who provide care every day.

Why this comes up so often

In dementia, agitation, aggression, suspicion, hallucinations or shouting are common. They are hard for the person, the family and the staff. For a long time, antipsychotics were a common response. They may still be needed in some situations. But regulators and clinical guidelines have become more cautious, for good reasons.

In 2005, the US Food and Drug Administration (FDA) added a boxed warning to atypical antipsychotics, based on an analysis of 17 placebo-controlled trials in older people with dementia: mortality was about 1.6 to 1.7 times higher with the drug than with placebo, with roughly 4.5% of deaths against 2.6%. Most deaths were cardiovascular or infectious, such as pneumonia. In 2008, the warning was extended to conventional antipsychotics. Warnings about an increased risk of stroke had already appeared before that.

More recently, a large study published in The BMJ in 2024 (Mok and colleagues), using primary care and hospital data from England, found that people with dementia who started an antipsychotic had higher risks of pneumonia, stroke, heart failure, heart attack, venous thromboembolism, fractures and acute kidney injury than those who did not. The risk of pneumonia in the first months was roughly double.

What NICE says

The NICE (National Institute for Health and Care Excellence, UK) guideline on dementia, NG97, is one of the most cited references. Broadly:

• Before any treatment, assess. Carry out a structured assessment to explore possible reasons for the distress and check for clinical or environmental causes, such as pain, delirium or inappropriate care.
• First, psychosocial and environmental interventions, as initial and ongoing management.
• Antipsychotics only in specific situations: when the person is at risk of harming themselves or others, or when agitation, hallucinations or delusions are causing them severe distress.
• If they are used: discuss benefits and harms with the person and family, use the lowest effective dose for the shortest possible time, and reassess at least every six weeks.
• Stop if there is no clear ongoing benefit, after discussing it with the person and family.
• Extra caution in dementia with Lewy bodies and Parkinson's disease dementia, where antipsychotics can worsen motor symptoms and cause severe reactions.

In Portugal, assessment and prescribing follow national standards and clinical practice, and are the responsibility of the attending doctor. The underlying logic, however, is shared by many guidelines: understand first, then act.

Behaviour as a message

One of the most useful ideas for carers is to see behaviour as a form of communication. A person with advanced dementia may no longer be able to say "I'm in pain", "I'm hungry" or "I'm frightened". They say it another way: they shout, push, refuse, try to leave.

Before thinking about medication, it is worth going through a simple list:

• Pain. It is badly under-recognised in dementia. Constipation, teeth, wounds, joints. There are observational pain scales for people who cannot say, such as PAINAD.
• Basic needs: hunger, thirst, cold, heat, needing the toilet, tiredness.
• Infections and delirium: a sudden change in behaviour may be a urinary or chest infection and needs medical assessment.
• Fear and disorientation: a noisy room, an unfamiliar person, a mirror, intimate care done in a hurry.
• Boredom and lack of purpose: hours with nothing to do also generate agitation.
• Time of day: late-afternoon agitation has its own patterns, which we covered in sundowning.

Recording when it happens, what came before and what helped calm things helps the clinical team decide better.

Non-drug approaches

There is no single solution, and the evidence varies from approach to approach. What the guidelines ask for is a plan tailored to the person. Some common approaches:

• Person-centred care, based on their life story, likes and routines.
• Adjusting the environment: less noise, good light, clear signage, spaces to walk safely.
• Meaningful activities: music the person likes, familiar tasks, contact with nature, reminiscence.
• Calm communication: face the person, speak slowly, don't argue about the facts, acknowledge the emotion. There are practical examples in when they repeat the same questions.
• Training and support for staff and family, because how people respond changes a great deal about what happens next.

Non-drug does not mean anti-medicine. It means putting each thing in its place, as we discussed in non-drug is not anti-drug.

Reviewing medication regularly

Many people start an antipsychotic during a crisis and are still taking it months or years later, without anyone asking again whether it is still needed. This is where the care team has an important role, without deciding for the medical team:

• Know what medication the person takes and since when.
• Record what you observe: drowsiness, falls, stiffness, difficulty swallowing, changes in behaviour.
• Ask for a review when something changes, or simply when time has passed.
• Involve the family in those conversations, as NICE recommends.

And to repeat: never stop or change a medicine without medical advice. Some reductions need to be gradual and supervised.

Where RVer can fit, and where it can't

An RVer session can be one of the possible calm activities in a non-drug plan: a familiar place, a quiet moment, a starting point for conversation, always accompanied by a professional and stopped whenever the person wants. It is not a treatment for agitation, it does not replace assessment or medication when that is needed, and it should not be used with someone in acute crisis. The selection criteria are in virtual reality in dementia.

In summary

• Decisions about antipsychotics belong to the medical team; nobody should stop or change medication on their own.
• Regulators and studies, from the FDA to The BMJ in 2024, link antipsychotics in dementia with higher mortality, stroke and pneumonia, among other risks.
• NICE (NG97) asks first for an assessment of causes and for psychosocial and environmental interventions.
• When they are used, it should be at the lowest effective dose, for the shortest time, reassessed at least every six weeks.
• Behaviour often expresses a need: pain, hunger, fear, discomfort. Looking for it is the first step.
• Calm activities, virtual reality included, can be part of a plan without being presented as treatment.

This article is for information only and does not replace medical assessment or pharmaceutical advice. Do not stop or change any medicine without speaking to the attending doctor; in Portugal, SNS 24 (808 24 24 24) can advise and Alzheimer Portugal supports families and carers. In an emergency, call 112.

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.