3.10 Strategies to help with behaviour and personality changes

Changes in behaviour and personality are common and can be distressing for carers and people living with dementia. Changes in behaviour and personality are often some of the first symptoms of young-onset dementia in contrast to the well-known loss of memory and confusion seen in older people. Understanding ‘triggers’ (i.e. situations, events, people or environments that provoke changes) and using calm, consistent approaches can help manage situations more effectively.

Below are four common changes of behaviour or personality for people with young-onset dementia with some ideas for managing. It is important to know not everyone with young-onset dementia experiences the same changes, or experiences behaviour changes in the same way. Understanding why these changes might occur, and intervening early is key to managing them effectively and often, prevent them from escalating.

Why do these changes occur?

Changes in behaviour and personality generally are underpinned by changes in the brain caused by the dementia. These changes might be as a direct cause of damage to certain parts of the brain. For example, apathy may be occurring because the brain’s ‘starter motor’, that is, the part of the brain that initiates or starts an action is damaged. Similarly, the person may become disinhibited because the ‘socially appropriate’ filter of the brain is damaged.

Often, the type of changes, how often they occur, and the severity of these changes are influenced by what is going on for the person. For example, a change in behaviour may occur if:

• The person is tired, uncomfortable, in pain, hungry, thirsty or needs to use the toilet.
• The person has another illness such as a urinary tract infection or respiratory infection.
• The environment is over- or under-stimulating. For e.g. dinner at the pub with noise, many people, lots of movement and dim lighting may mean the brain is getting so much sensory input it will get overloaded and be unable to function properly, resulting in frustration. If the environment is poor, providing little opportunity to engage with things or people, the person may become withdrawn or agitated.
• Communication is complex or difficult to understand. Long sentences, lack of context (names, places, specific situations) may mean the person cannot understand what is being asked of them. Also, difficulty in communicating their needs may turn into frustration or anger.
• The task they are trying to do is complex, has many steps or there is competing stimulation in the environment.

These situations – task, environment, communication and health/comfort status – are called ‘triggers.’ Understanding the interaction of triggers with the nature of the dementia is key to prevention or lessening the impact of changed behaviours and the distress that they can cause.

Agitation or aggression

Agitation is a ‘catch all’ term used to describe restlessness, excess physical activity (like pacing or hand wringing), speaking loudly and repetitively, swearing and so on. Agitation may be triggered by pain, fatigue, frustration, or overstimulation. Catching early signs of agitation and preventing it from getting worse, or the person becoming aggressive, is always best. You can try:

• Approach the person calmly and speak in a gentle, reassuring tone
• Offer a short break or change the environment to one that is less stimulating
• Redirect attention to a familiar or enjoyable activity
• Ensure basic needs (hunger, thirst, need to use the toilet) are met
• Ensure the person is not in pain.

Lucy noticed her husband became agitated every time the news was on TV. She thought the scenes of violence may be distressing. She started turning the TV off and invited him to help with a simple household task instead. Over time, these small changes meant Chris was much calmer.

Stephen was at the local pub for a birthday dinner. The noise of many people talking at once, background music, being asked to hurry up and decided on his meal overwhelmed him. He stormed off.

Thinking about what may be triggering the behaviour may mean you can modify things to prevent or reduce the likelihood of a behaviour occurring.

Indira loved cooking lunch with other women before community meetings. However, she would make mistakes and when corrected she would start shouting and threaten to throw things in the kitchen. Her husband, Raj, arranged a guest speaker at a community meeting to talk about dementia and following this talk, they collectively worked on a solution to invite Indira to undertake simpler cooking tasks or redirect her to a job that she would succeed at completing.

Disinhibition or inappropriate comments

Some people with dementia may say or do things that are socially inappropriate, rude or provocative. For some people disinhibition extends to spending a lot of money or drinking a lot more. This happens because the brain loses its social ‘filter’ and it becomes difficult for the person to control impulses.

You can try:

• Stay composed, calm and avoid reacting angrily
• Move away or remove the person from the situation, especially if it escalates
• Explain to family and friends about disinhibition as a symptom of dementia and stress the importance of not reacting angrily or becoming upset
• Prepare responses in advance (e.g., “He has a condition that affects his behaviour” or “She has dementia and that means she might say or do things she wouldn’t normally”).

Peter’s wife occasionally made rude comments about other people at her book club. He found that quietly redirecting the conversation and later explaining the situation to others helped reduce embarrassment and tension.

Apathy or withdrawal

Apathy in dementia is an apparent lack of interest, emotion, concern or motivation. It may lead to the person living with dementia and/or the carer withdrawing from social and other pleasurable activities. It is a symptom that can be particularly draining for the carer.

It is important to talk about this with the person living with dementia’s doctor and determine that they do not have depression, which can be treated.

Apathy may be occurring because the brain’s ‘starter motor’, that is, the part of the brain that initiates action is damaged.

To manage with loss of interest in activities or social withdrawal you can try:

• Encourage participation in activities that are meaningful or enjoyable. Music, (especially personalised playlists) singing, and pets have helped some people.
• Schedule activities into a structured routine so they become automatic.
• Break tasks into smaller, manageable steps.
• Offer gentle prompts and companionship rather than pressure.
• Celebrate small achievements to reinforce engagement.
• Sensory stimulation, such as folding materials (e.g. table napkins with different textures), making collage with different textures e.g. an autumn leaf collage) may be successful for some people.

Carers may need particular support when caring for a person with apathy. Carers need to maintain their own wellbeing through social engagement and pleasurable activity.

Impulsive behaviour

Like disinhibition, above, impulsivity results from damage to the frontal lobes of the brain that gives us our self-control. When self-control is impaired, the person may “act without thinking”. These may be minor annoyances, such as interrupting others’ conversations or pushing in front of a queue, or be serious issues such as driving after losing a licence or making very large bets and losing a lot of money. Sometimes lack of self-control means that if they are very frustrated a person with dementia will hit out or storm of out of the home and become disoriented or even lost.

Your response depends on the circumstance. You can try:

• Prevention – gently redirecting attention if the person is about to act without thinking.
• Create a safe environment by removing hazards or items that could trigger risky behaviours. You may know of triggers (like operating a complex TV remote control that leads to a rage). Replacing the remote with a simple one may be helpful.
• Use clear, simple instructions and reminders about appropriate behaviour.
• Validate the persons feelings. Sometime “I can see you are really frustrated – I would be too” lets them know you understand and may de-escalate the situation.
• Play their favourite music.
• Consider if pain, huger, thirst or need to use the toilet is a contributing factor in what appears to be impulsive behaviour.

Investigating potential health concerns – such as other illness is important, especially if there is a sudden change in behaviour. Consider mental, as well as physical health. For e.g. when a person appears apathetic and has lost interest in previously enjoyable activities, it is important to talk their doctor and determine that they do not have depression, which can be treated.

Clear and simple communication, one idea or question at a time, and avoiding reacting angrily (sometimes easier said than done) can help de-escalate difficult situations.

Looking after yourself

Managing behavioural and /or personality changes can be very tough. You should never feel you have to manage alone, particularly is you feel that personality change makes you increasingly not recognise the person you care for. You may not need to intervene. Sometime removing yourself, if safe to do so, for some time out is appropriate. Use the confidential, free resources and expertise of the organisations listed in the box below.

These are only a few changes that you may experience. Don’t try to manage on your own. Confidential, free support and assistance is available.

Photo: Remi Walle via Unsplash.