BLOG Dementia behaviour that challenges: What your loved one is trying to say and how to help them

When your loved one is trapped in dementia, they can't communicate with you as they used to. Understanding the messages behind their behaviour and responding differently changes life for the better for everyone.  

When a loved one has dementia, it can be bewildering trying to understand their behaviour.
 
Families ask us “Why does mum keep asking the same thing over and over again? We’ve told her the answer a dozen times.” Or “Why does Dad get angry and aggressive? He was never like that before.”
 
When a loved one has dementia, it’s heartbreaking for the entire family when communication becomes difficult. This is someone you’ve known all your life but can no longer connect with. You’re at a loss as to how to understand them and how to comfort and calm them. Everything seems out of control.
 
The challenge is yours
 
The first step is to understand that when we talk about challenging behaviour, the challenge we refer to belongs to us, not the person with dementia.
 
We have to look to our own behaviour in a difficult situation because dementia leaves a loved one powerless to modify or moderate their own behaviour.
 
This might sound intimidating but it’s actually a really good thing. By understanding that this is your challenge, you open up a whole raft of alternative outcomes. When you use different techniques, you get different results. Much better ones.
 
Challenging behaviour is your loved one’s attempt to communicate an unmet need
 
This is the second important truth to understand. Some behaviours might look like random outbursts or eccentric habits but they have real meaning.
 
People with dementia still feel physical and emotional pain but when something is wrong, they can’t articulate their discomfort in the usual way. They are trapped in dementia and have to search for different ways to communicate their distress.
 
Check the bases
 
Understanding challenging behaviour should always start with checking the bases.
 
There are fundamental reasons why any of us feel distressed or angry. Is your loved one hungry or thirsty? Are they uncomfortable? Are they too hot or too cold? Do they need the toilet? Are they in pain?
 
Rule these factors out before exploring deeper reasons.
 
“We must learn how to stay connected with people with dementia” G. Stokes
 
There are four very common behaviours that challenge in dementia:
 
1 Repetition
 
“Why does mum ask the same question over and over again?”
 
There might be a simple explanation here. The short term memory loss that comes with dementia means new information is lost in moments hence the need to ask the same question repeatedly.
 
Boredom might be involved. So often people with dementia are left to do nothing but nap in a chair. Who wants to live like that?
 
But other deeper emotional issues may also be at play. If Mum asks repeatedly where her own mum is, she may be asking for affection or reassurance. Asking to go home when already at home might be an expression of fear and a desire for familiarity and security. Asking when it’s dinnertime might be about hunger or it might be an expression of loneliness and a need for the companionship of eating with someone else.
 
How to respond:
 
First check all the bases – food, toilet, comfort, temperature and pain.
 
Sit with your loved one. Hold their hand. Make eye contact with them. Reassure them and talk gently to them.  
 
Write the answers to an often-repeated question on a pad to help remind them.
 
Use positive distraction to move them out of their groove - music or photographs, for example.
 
2 Wandering
 
“Why does Dad wander off?”
 
Pure panic takes over when a loved one with dementia goes missing. It’s unbearable imagining what might happen to a vulnerable person when they’re alone ‘out there’.
 
Reasons for wandering
 
Again, there are numerous reasons why someone with dementia wanders.
 
Often a person is searching for a place or person from their past. They might be following the comfortable routines that gave structure to their old life – taking the route to work, for example. Or walking may simply be a good way of dealing with stress, boredom or loneliness.
 
How to respond
 
Safety issues are paramount here. Ensure adequate care and supervision is in place. We can help you. Insert labels or information cards in your loved one’s clothing listing name, address and contact numbers. Take them walking so they can enjoy the outdoors safely. Think about ways to increase activities so your loved one is occupied and interested when indoors.  
 
3 Noise-making
“Why does Mum keep making strange noises?”
 
This behaviour might take the form of yelling, calling out, groaning or singing. Pain or physical discomfort can be a reason – a person may literally be issuing a cry for help.
 
Hallucinations are another reason. These can be terrifying. Your loved one is shouting at something or someone who is very real to them. What they see might be in their imagination but their fear is real and overwhelming.
 
How to respond:
 
Again, check all the bases. Does the person require food, water, toilet or pain medication?  
 
When extreme distress takes over, talk calmly and gently to your loved one. Reduce their sensory overload by turning down the telly or bright lighting. In the case of a hallucination, reassure your loved one. Tell them they are safe. Remove them to another room if it helps. If they ask you if you can see “It” say you can’t but you know it is real to them.
 
4 Aggression
"Why does Dad get angry and aggressive? He was always so calm and gentle."
 
Imagine a world where nothing is familiar any more. Everyone looks like a stranger. Connections are lost and life is bewildering. This is the devastating experience of dementia for many people. When a person lives in a past reality, fear and frustration can be extreme and show themselves as outbursts of anger or aggression.
 
How to respond:
 
The aim is to diffuse the situation so you can explore it further. Don’t raise your voice. Don’t be confrontational. Keep your distance and don’t make physical contact for a time. Give your loved one the reassurance of taking charge by talking quietly but firmly. Don’t show your alarm or anxiety.
 
When emotions are calmer, encourage them to talk rather than act out their feelings. Listen very carefully, make eye contact and acknowledge their feelings. Try to agree on something to create co-operation. Offer some simple options like a cup of tea or a snack.
 
Can we help?
 
Managing dementia is not easy.
 
We know this too well from our discussions with families throughout Trafford. Restoring meaningful communication with a person with dementia is at the heart of our unique therapeutic care and we have helped many families re-connect with their loved ones.
 
Our Bluebird Care Trafford team is trained in our own brand of Whole Person Care, which looks at people in their entirety. This is critical to what we do. Every customer is different. They are not their dementia. Our care respects the uniqueness of every one of them.
 
I see every day how my team’s sensitivity and compassion brings families together again and helps our customers live better lives for longer. If we can help – or just listen for a while - please don’t hesitate to get in touch.

By Ian Helsby, Owner, Bluebird Care Trafford.
 
 
Sources: Simon O’Donovan, Nurse Consultant Older Vulnerable Adults, Cardiff and Vale NHS Trust, 2005, G Stokes, Nursing Times