Everyone is different and people with dementia are also quite different from each other. There is a common understanding that the person might have memory problems. They certainly do, but research indicates that this is not always the first problem, or the most disabling. This sometimes means that others might misunderstand what the person is going through, and not be aware of the pressures on family, friends and carers who are most closely around the person.

The progress of symptoms varies in speed, and sometimes they fluctuate as a result of environmental issues that cause stress. A temporary illness like an infection might also cause a spike in behavioural symptoms that is resolved after the infection as been treated. 

“Dad was throwing his walking frame at visitors and taking off his clothes. After the doctor prescribed antibiotics for his chest infection, he got back to his slightly confused, but calm and polite self.”

What common behaviours cause difficulties?  This list is not exhaustive:

• Withdrawal and apathy
• Wandering and becoming lost
• Sleep disturbances
• Paranoia and suspicion
• Loss of inhibition
• Hallucinations and delusions
• Anxiety and fear
• Agitation and restlessness
• Aggression and anger

There is no extraordinary or radical medicine for this, and management of these problems is largely based on environmental responses and support. Some of the things you can do could help with all or any of the problems, but there are very specific interventions for some of the more concerning issues, such as the tendency to become lost, which is a huge source of worry for families and distress for the person concerned. Sometimes it seems that nothing you do can make a difference and that is when you need to ask for outside help.

1. Create a calm environment

What counts as calm depends on the individual. Some people are calmed by background music, if it is the right music, and others need more peace. One thing to check is an auditory assessment of the environment. What does this mean? Most of the time most of us can screen out noises that don’t matter. This might be the washing machine or vacuum cleaner, clocks ticking, the traffic outside. For someone with dementia, those background noises are a real problem. It helps to distinguish the idea of “noise” and “sound”. If I am talking to you, you want to hear the sound of my voice, and not be distracted or confused by the noise of cutlery banging on tables, and people shouting in the next room. For a person with dementia, this distinction is quite hard. Shutting the door and using a tablecloth can make the difference between the person being angry and annoyed, or calmed and reassured by what you are saying.  Audit the noise in the environment to reduce behavioural symptoms. You may be surprised at the extent to which you did not notice background noise.

2. Establish a routine

A routine provides structure, familiarity and predictability, reducing confusion and anxiety in people with dementia.  It’s also good for carers. Constantly having to decide what is to be done next is tiring for anyone. If the person has sleep disturbances, some routines can help. Exercise during the day can create a healthy fatigue, and if it is routinely done early in the day and out of doors, the effect of the light can help to set the body clock. A bedtime routine of reducing stimulation and reducing caffeine helps. It is very important to keep the person with dementia always well hydrated, but if that can be done earlier in the day it might reduce nocturnal trips to the bathroom, after which the person might never go back to sleep. 

Daily or weekly patterns of activity promote comfort, and can reduce agitation, and help reduce the instability that might result in anxiety and restlessness, especially if it involves exercise. One useful tip is that if something is going to have to happen that is not routine, such as a family occasion or a hospital appointment, it’s a good idea not to introduce the idea too soon. Otherwise for the two weeks before the birthday party the person might keep asking when it is going to be, and getting concerned, and perhaps building a resistance to the idea of attending.

3. Do not enter into arguments

Maybe a good argument or hearty discussion is something you’ve always enjoyed.  Maybe you feel that if the person with dementia can just be put right about mistakes they’re making, it will help them get back to reality. Whatever the reason you are tempted to enter into discussion about facts, you are only causing trouble for yourself and the one you care for because they may become upset or agitated and you still will not have changed their view. If the person is complaining about something that is untrue, you can validate their feelings by saying, “I’m so sorry because I can see this is upsetting for you.” This might give comfort, but the next thing and more important things is to use distraction. Redirect the person’s interest to something else.  Dementia is not fair and you have to respond in a way that might not feel polite, especially if it is to the parent who taught you good manners.

“Mum rang to say that no one ever comes to visit her, even though I’d been with her all morning. I realised that she was just feeling abandoned in that moment, so I didn’t argue, but interrupted her and told her all about the school report cards that came in this week, and she’s always interested in how the children are doing even if she doesn’t remember their names. I know interrupting is rude, but it always works.”

4. Keep in touch with the social work and medical services

When a person with dementia goes through a rapid change, there is possibly a medical issue that can be resolved. For example, some people with dementia will have hallucinations. This is when the person hears or sees something that is not there. Hearing voices is quite common. You can learn a lot about what is troubling them if you enquire about what they see or what the voices are saying. Just avoiding arguing and validating their feelings helps. However, you should also talk to the doctor in case the medication regime or some underlying infection is causing the change.  

“Dad didn’t want to get out of his chair in case he stood on the cat on the carpet that didn’t exist. I agreed it would be a shame to hurt a cat and suggested it would probably run off if he moved. Then I called the doctor, because this is new.” 

New behavioural symptoms that cause difficulties for you are an extra pressure that social work support may be able to help with. If you had a social work assessment at the early stages of the person’s illness you need to assume that you have fallen off the radar, and get back in touch with them when changes take place in the progress of the person’s condition.

5. Take care of yourself

This cannot be said often enough. There are people out there who want to help you, and there are resources which are available that many people don’t get round to accessing. Of course it can be intimidating to fill out forms, and finding time for seeking help is just another task you have to do. If you can find a local dementia carers’ organisation, they can really make a difference to your life. Asking for help is something many carers are reluctant to do. It starts with not recognising that you are a carer, because you believe you are only doing what any family member or civilised neighbour would do. If caring matters to you, then you want to be able to do it as long as you can, and failing to take care of yourself will stop you achieving that. 

One fundamental rule of caring is to avoid making “unkeepable” promises. To promise someone that you’ll never accept “strangers” coming into the house, or you’ll never allow them to move to a care setting is giving yourself an impossible task. Allowing others to help with some aspects of the care allows you to go back to focussing on the things that only you can do because you know the person well.

The behavioural symptoms of dementia are a massive drain on energy, but there are many sources of more detailed advice on how to manage them. One example is the A to Z of dementia on my website at www.juneandrews.net

For more specific and targeted help, contact your local Alzheimer’s, Age UK, or Carers’ organisation.

Professor June Andrews

Professor Andrews is a dementia specialist and former adviser to the Dementia Trust. After a long career in the NHS, academia and government, June now works as a consultant to Sedaca Ltd, making life better for people affected by dementia. She is the author of Dementia the One Stop Guide.