Dementia is now one of the leading causes of death in this country. By 2025, over 1 million people will be living with the disease. Yet there are many myths about dementia which are still prevalent today. For Dementia Awareness Week, we're debunking some of the common myths about dementia and outline what you need to know.

1. People with dementia don’t suffer pain

During later stages of dementia a person loses many of their verbal skills so it is rare someone with advanced dementia to complain about pain.  However this does not mean that they don’t feel pain. Keep an eye out for moans, groans, grimaces, clenched jaws or a limp. Changes in behaviour can also be a clue, so if they are agitated or more irritable than usual, it could be a sign of discomfort.

2. People with dementia can’t communicate

Dementia can make it hard for people to communicate. A person with dementia may have trouble finding the right word, they may repeat words and phrases, or may become 'stuck' on certain sounds. This may be compounded by other sensory impairments such as sight or hearing problems. Communication difficulties can be upsetting but there are lots of tips to make it easier. Make sure you speak slowly, use short sentences, offer reassurance and allow plenty of time to respond.

3. People with dementia won’t know I’m there so there is no point in visiting

Even people with late stage dementia still have the ability to interact. Try reminiscing about the past, singing songs or reading books from the person’s childhood or looking at old photos and talking about them. People might not remember you being there, but they will remember how you made them feel.

4. People with dementia can’t make decisions

People with mild dementia can understand information they are given and reason adequately to make decisions. Even at a later stage, capacity can fluctuate. That said, it is always best to make important decisions like advanced care plans earlier rather than later. End of life care decisions are more complicated for carers if the person hasn’t expressed what they would want.

5. You should expect violent behaviour from someone with dementia

Everyone is an individual and not everyone will become aggressive. Aggression could be caused by pain,  drug toxicity, an infection or feelings of fear, anger or frustration. People may also become agitated because of hunger, thirst or other physical discomfort. Pay attention what is triggering aggressive behaviour and consider how these triggers can be avoided. Keeping routines, using familiar possessions like photos or a duvet or using distraction techniques can all help calm someone who is agitated.

6. People don’t die from dementia

Dementia  is a progressive, life-limiting disease. The life expectancy of people with dementia can be unpredictable, and people can live for many years with the disease. There are some medications which attempt to slow down the progression of Alzheimer’s disease but they are not a cure. It can be difficult to know when someone is approaching the end of life. Signs like being unable to swallow, difficulty breathing, frequent infections and regular hospital admissions can indicate someone is at an advanced stage of the disease. Contact your local GP or specialist nurse if you are unsure or need additional support.

 Trinity has a range of support to help people living with dementia and their carers. Our specialist nurses and dedicated outpatient group can help with planning for the end of life, living well with dementia and coordinating care and support at the end of life. For carers, Trinity offers advice, counselling and respite in a specially designed dementia room in our inpatient unit. Get in touch to find out more.