Stress and distress

It can be hard for carers to cope with behaviours that indicate that someone with dementia is experiencing stress and distress.

There are lots of potential factors that may be beneath the waterline.

Due to brain changes, the person with dementia’s time-line may have shifted and they may believe they are much younger than they really are. This will impact on their perspective of the world around them. For example, they may believe they are in their early 30’s and will have to leave to pick up their kids from school. Or, they may believe they are still working. If they are a farmer, they may get up at 5am and want to get out to let the cows out of the byre. Or if they work in a factory, they may want to leave the house at 6am to catch the bus for their shift.

The person may have started a new medication, or had medication increased and be experiencing side effects or a new medication may be interacting with other medications prescribed. Or, they may have had medication reduced or stopped and this may be having an adverse effect causing particular behaviours.

The person with dementia may have developed anxiety, or their anxiety may have increased due to having been given the diagnosis of dementia. Or their anxiety may have increased as they are struggling to cope with changes in their functioning/abilities.

Depression is very common among people with dementia, especially during the early and middle stages. They may be experiencing psychotic symptoms (seeing/hearing/feeling things) due to the type of dementia they have or they may have a psychotic depression.

All the senses can be altered by dementia, sight, hearing, touch, smell, taste and also the perception of pain.

Pain is often found to be a trigger for stress and distress. If pain is being experienced by a person with dementia, and they are unable to communicate this, then it will go untreated, leading to high levels of stress and distress.

People will have particular personality traits prior to their dementia. There is evidence that lifelong personality traits persist, even after neurological damage has occurred. They can become more pronounced as the dementia progresses.

If the person has been someone who liked to make all the decisions and control their environment, when they are told they are no longer able to do something that they believe they should be able to do, they may challenge this. Their behaviour may change as a response.

Personality and behaviour changes are hallmarks of frontal lobe dementias and present in the very early stages.  The person may act very differently than they used to, saying things or doing things that are rude and offensive. This may be completely at odds with how they would previously have acted.

The person may become frustrated due to limited mobility and depending on others.

They may be embarrassed and refuse help and support to manage their incontinence.

They may have multiple age related conditions and advancing frailty leading to complex needs and support but not recognise this.

Cognitive changes will affect how they may see the world, what they are hearing and how they comprehend and process information. They may have problems with:

• orientation
• finding their way around
• sensory loss
• behaviour and personality changes

Ageing increases the risk of diseases such as type 2 diabetes, stroke, and hypertension. These can in turn cause symptoms that may affect a person’s appetite, energy levels, and their mood. They may become more irritable and less tolerant of frustrations.

They may no longer understand familiar places, be able to navigate the layout of a place or understand signage. 

Do they have their own things around them to make them feel safe and secure, giving them a sense of familiarity?

They may be too hot, or too cold as the body’s temperature regulation can be affected in dementia. The environment may be too bright or too dark causing issue with their interpretation of things such as floor surface, shadows and reflections.