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Join the Conversation 
Changing how you respond to some of the more challenging aspects of caring can really help to ease tensions that can arise during dementia caregiving. Focusing on what you can change, rather than what you can't, is a good starting point – learning to ask for help, changing how you think and even your style of caring can really reduce the stress of caring.
Due to disrupted brain network connections, people with dementia can exhibit some unusual and challenging behaviours. It's important not to take them personally and to keep in mind that these behaviours may be a way of communicating unmet needs.
In dementia, parts of the brain become damaged, and this can result in challenging behaviours that may be difficult to understand and deal with. The good news is that there are things that you can do to help you to manage these behaviours.
Our brains are busy. Every time we say something, do something or even think about something, teams of cells across different regions of the brain work together to make that happen. We don’t realise it, but our brain is constantly gathering information and comparing it to past memories and figuring out what behaviour is appropriate in any given circumstance.
If we get a neurodegenerative disease like Alzheimers, parts of the brain become damaged. Networks get disrupted and can’t work as part of the team like before, and it can lead to all sorts of frustration and confusion – both for people with dementia and for loved ones. This damage can result in unusual or challenging behaviours.
Dealing with these behaviours isn't always easy when you are the caregiver. It's important not to take these actions or comments personally. Why? Because the disease causes the brain to malfunction in a way that can result in unusual behaviours or the person saying things that might be hurtful or seem out of character.
Frustrating times
Let's take a look at some of the behaviours that can arise from damage to the brain.
One of the best known effects of dementia is memory loss. This can lead to anxiety and frustration for the person with dementia, and it can be frustrating for the carer too. The person with dementia might feel upset that they can’t recall recent events, and they might trail people around, or constantly check and recheck things.
Other challenging behaviours include fidgeting and pacing which might be signs that the person with dementia is bored or upset. There might also be a lack of inhibition.We spend years growing up learning how to act appropriately in social situations – but if we can no longer access the social rules that we learned a long time ago, then we might do or say unusual and even socially embarrassing things.
Signals and clues
Sometimes what might seem like bizarre behaviour might be a way that the person with dementia is trying to let those around them know that they need something. So, as carers, we need to look for clues as to what that need might be.
Brain changes in dementia can sometimes lead to more aggressive behaviours like shouting and screaming, hitting and kicking. These are upsetting for carers, but they may be a way for the person with dementia to express frustration, embarrassment or boredom. By paying close attention to the things that happened immediately before the challenging behaviour, we can sometimes figure out what gives rise to it. This may help with putting things in place to prevent or reduce the behaviours going forward.
Challenging behaviours may also be a result of hallucinations, when messages in the brain get mixed up, and they can confuse or frighten the person with dementia. So staying calm and reassuring your loved one is important at these times.
Or there may be something in the environment that is annoying or hurting them like loud noises or clothing that is too tight. Perhaps they need something but they can’t express it – maybe they are thirsty or they need to go to the toilet. Paying attention to the environment and making adjustments through trial and error might help.
Detective work
As a caregiver, it helps to become a detective, figuring out if these unusual or challenging behaviours are a way of asking for help. It may help to keep a journal to help spot triggers that set off challenging behaviours, as well as triggers that lead to enjoyable encounters.
Doing this will not only help the person with dementia to feel more comfortable in their environment, it will also help to minimise the stress that can be associated with caregiving. Managing stress is good for your brain health. But if at any point you feel that you or the person with dementia needs more help, seek professional support as soon as possible.
For some practical tips to take the stress out of challenging behaviours, see the articles below.
This project was funded by the Health Research Board KEDS-2015-1667 with the support of the Alzheimer Society of Ireland and the Dementia Carers Campaign Network.
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Neurodegenerative diseases like Alzheimer’s disease and other dementias affect the way our loved ones behave in ways that are difficult to understand. ...
People with Alzheimer's disease and other dementias may experience progressive language impairment, both in expressing and understanding language. The ...
The Alzheimer Society of Ireland provide a number of factsheets on different types of challenging behaviours that are a feature of dementia. The factsheets explore the possible reasons for these behaviours to help you interpret them, as well as offering suggestions for managing them.
Some people with dementia may behave in unusual ways - this factsheet from the Alzheimer Society of Ireland offers advice for interpreting and coping with unusual behaviours such as repetitive questioning, phrases or movements, lack of inhibition, or laughing and crying.
Some people with dementia may behave in an aggressive way - this factsheet from the Alzheimer Society of Ireland offers advice for interpreting and coping with aggressive behaviours.
Wandering, the tendency to leave home to go for a walk and then get lost, may be a feature of the behaviour of some people with dementia. This factsheet from the Alzheimer Society of Ireland explores possible reasons for wandering and tips for managing this behaviour.
Some people with dementia may experience hallucinations or delusions. This factsheet from the Alzheimer Society of Ireland provides further information about these symptoms, and ways of addressing them.
When caring for a partner with dementia, sometimes sexual problems arise in the relationship. This factsheet from the Alzheimer Society of Ireland explores possible causes of such problems and ways of getting support to cope with the situation.
This guide from the Alzheimer Society of Ireland outlines tips and memory aids for coping with memory loss.
This education and training programme offered by the Alzheimer Society of Ireland aims to develop family carers' knowledge of Alzheimer's and other dementias, and their caregiving skills.
Later in 2016, this resource from the Care Alliance Ireland will provide information on Family Carer training events and initiatives in Ireland and Europe, good practice tips and other resources for family carers and trainers.
The Family Caregiver Alliance in the USA provide a variety of factsheets on Alzheimer’s Disease and other dementias and neurological conditions, as well as on other caregiving issues such as assistive technologies, hiring in-home help, and daily tasks like toileting, feeding, and dental care.
This resource from the Family Caregiver Alliance outlines ten key principles that are important to bear in mind when caring for someone with dementia.
This factsheet from the Family Caregiver Alliance provides more information on the different symptoms of Alzheimer’s Disease at early, middle and late stages of the disease, and corresponding caregiving strategies.
People with dementia experience progressive language impairment, both in expressing and understanding language - this varies from person to person and from day-to-day. This guide from the Family Caregiver Alliance provides practical advice on communicating with people with dementia and on dealing with different types of challenging behaviours.
