When Behaviour Changes: What to Know, and What to Do

If you’re caring for someone living with dementia, you might start to notice changes in their behaviour over time. These changes can creep up slowly - so slowly that you don’t realise how much things have shifted until you're feeling overwhelmed.

There’s an old story about a frog in slowly warming water — not noticing the danger until it’s too late.

In the similar way, carers may adapt to small changes over time, not realising how serious or risky things have become—until suddenly, it's too much.

It’s important to remember: It’s not personal. 

It’s changes in the brain and the way the person is able to interpret the world around them which is leading to a change in  behaviours.

A Little science to help make sense of it

Dementia causes damage to parts of the brain that play a central role in our ability to carry out complex functions. Dementia can affect:

Senses – Trouble recognising sights, sounds, smells, or touches

Movement – Difficulty starting, coordinating, or controlling physical 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

When these areas are affected, a person might:

• Become more anxious, tearful, agitated, or suspicious

• Struggle to find the right words

• Lose awareness of danger, like leaving the oven on, or poor road sense when crossing the road 

• Forget to eat or drink

• Take longer to process information 

• Be more distractible or impulsive 

Caring for someone with a cognitive condition can be emotionally and physically exhausting. Symptoms often vary not just day to day, but hour by hour, which can leave you feeling confused or even doubting what you’re seeing. At times, it might seem like the person is ‘putting it on’, but these shifts are often just part of the condition.

This unpredictability can be extremely testing for you as a carer. For example:

• Repeating the same answer to the same question over and over can be frustrating and mentally draining.

• Social changes in the person’s behaviour may be embarrassing or uncomfortable, and could even lead you to avoid going out altogether.

• If the person feels disoriented or frightened because they can’t make sense of their surroundings, they may follow you constantly—even into the bathroom—leaving you without a moment to yourself.

• When the person can’t understand your words or express themselves clearly, it can be hard to know how best to help, adding to your sense of helplessness.

• Their frustration may sometimes be directed at you, with unkind words or aggressive behaviour, causing fear or anxiety.

• And perhaps most painfully, when the person can no longer start a conversation or connect with you as they once did, you may feel deeply lonely and isolated in your own home.

  
  

Understanding this can help protect your heart, even when the behaviour feels difficult to manage.

Behaviours to Watch Out For

If you notice any of these signs, it’s time to ask for help:

• Verbal or physical aggression

• Severe anxiety, distress, or low mood being experienced by either of you

• Increased risk of walking off

• Self-neglect by either of you - not eating/overeating, drinking, or taking medications

• Risky behaviours - like starting accidental fires, giving money away or making poor financial decisions

• You feeling exhausted, unsafe, or near breaking point

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

If you ever feel unsafe or threatened, remove yourself to a safe place—lock yourself in a room if needed—and call a trusted family member or 999 for help.

Even if you never need to use this advice, it's always better to be prepared.

Specialist Older Adults Mental Health Service (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.

Practical Resources

Dementia UK offers excellent, practical advice, including:

• What to do in a crisis

• How to make a personal safety plan

You can find their advice here: Keeping Safe When You Care for Someone with Dementia – Dementia UK

(There's also a downloadable leaflet linked from their page.)