When Dementia Changes Behaviour: What to Look For and What to Do

This article was written in association with the Sussex Partnership NHS Foundation Trust

If you are caring for someone living with dementia, you may start to notice changes in their behaviour over time. These changes can creep up slowly, so slowly that you do not realise how much has shifted until you suddenly feel overwhelmed.

There is an old story about a frog in slowly warming water, not noticing the danger until it is too late. Caring can sometimes feel like that. You adapt to small changes day by day without realising how serious or risky things have become until it feels like too much.

It is important to remember: these changes are not personal.

Dementia affects the brain and the way a person understands and interprets the world around them. This can lead to behaviours that feel very different from the person you knew before.

Why does behaviour change?

Dementia can damage different parts of the brain. Depending on where this happens, you may notice changes in:

• Senses: trouble recognising sights, sounds, smells or touches

• Movement: difficulty starting, coordinating or controlling actions

• Communication: struggles with finding words, understanding others or expressing thoughts

• Memory: forgetting recent events, names or how to do familiar things

• Emotions and behaviour: changes in mood, personality or social awareness

• Thinking and judgement: challenges with planning, making decisions or solving problems
  

What these changes can look like

When these areas are affected, everyday life can look very different. Carers often describe things like:

• Repeating questions again and again, which can feel frustrating and draining

• Social changes that may be embarrassing or uncomfortable, sometimes making you avoid going out

• Disorientation that leads the person to follow you constantly, even into the bathroom, leaving you with no space for yourself

• Communication breakdowns where they cannot understand your words or express themselves clearly, leaving you unsure how best to respond

• Frustration or anger sometimes directed at you, which can feel unkind, aggressive or frightening

• Loss of connection, where conversations stop and the person no longer engages with you in the same way, leaving you lonely even in your own home

• Risks to daily life, such as forgetting to eat or drink, leaving the oven on, or losing awareness of danger when crossing the road
  

Caring in these circumstances can be emotionally and physically exhausting. Symptoms may change not only from day to day but hour to hour, which can leave you doubting what you are seeing or wondering if the person is “putting it on.” In reality, these shifts are simply part of the condition.

Understanding why they happen does not make them easier, but it can help protect your heart. It is the condition, not the person.

When to ask for help

You do not have to wait for a crisis. If you notice any of these signs, it is time to reach out for support:

• Verbal or physical aggression

• Severe anxiety, distress or low mood (for either of you)

• Increased risk of leaving home unsafely

• Not eating, drinking or taking medication regularly

• Risky behaviours such as fire hazards or giving away large sums of money

• You feeling exhausted, unsafe or at breaking point

If you notice worrying changes, contact your GP for a review.

If you ever feel unsafe, remove yourself to a safe place, call a trusted friend or family member, or dial 999 in an emergency.

Even if you never need to use this advice, being prepared matters.

Practical Resources

There are specialist services and resources that can help.

• GPs and Community Mental Health Teams are the first step for assessment, referrals and medical reviews

• Admiral Nurses are dementia specialist nurses who support families across the UK

• Dementia UK offers practical advice and a helpline, including how to make a personal safety plan

• Carer Support Groups mean talking with people who understand can ease isolation and provide new coping strategies

Download this: Keeping Safe When You Care for Someone with Dementia – Dementia UK

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East Sussex SOAMHS

In East Sussex, the Specialist Older Adults Mental Health Service (SOAMHS) offers dedicated mental health support to older adults (typically aged over 70) who are experiencing moderate to severe and complex mental health issues, including dementia.

SOAMHS offers:

• A personalised assessment and coordinated care plan managed by a Lead Practitioner

• Support from a team of professionals, including mental health nurses, occupational therapists, psychologists, and support workers

You’ll usually need a referral from your GP - so contacting your GP is the first step.

If you are struggling to get a GP appointment, you can also seek a referral through the East Sussex County Council Mental Health Team or Carers Breaks Engagement Team.

However, SOAMHS will still need to contact your GP to access your health records and arrange for blood tests to rule out physical causes such as B12 deficiencies or delirium, which can cause changes in behaviour.