Have you ever been asked the same thing over and over by a person living with dementia, and said:
- I just told you
Has this happened to you?
Precisely because family members support them every day, they can get tired or confused and end up speaking sharply.
That is never because they don't care about the person.
But when thinking about how to be with a person living with dementia, helping them feel safe can sometimes matter more than telling them what's right.
This time, rather than looking only at the symptoms of dementia, we look at the feelings behind the person's actions and introduce ways of relating that families may want to value.
Are you looking only at the symptoms?
With dementia, you may see changes from before, such as forgetfulness, repeated questions, or trying to go outside.
People around them inevitably focus on those symptoms.
But that person is someone who has lived a long life since long before dementia.
They have things they loved, habits they kept, people they hold dear, and things they are proud of.
As well as understanding the symptoms of dementia correctly, it's also important to think:
- How is this person feeling right now?
- What are they anxious about?
- What would help them feel safe?
Thinking like this matters.
Look at the person, not the dementia. That's where ways of relating that lead to reassurance begin.
More and more things become "uncertain"
Normally, we understand what's around us based on memory.
- Where we are
- What today is for
- Who the person in front of us is
- What we just talked about
Knowing these things lets us feel at ease.
As cognitive function declines, things that used to be obvious can gradually become uncertain.
- They went out shopping but couldn't find the way home
- They were told the plan but can't remember what they're doing
- They feel as if they're somewhere unfamiliar and want to go home
For the person, it may be a more frightening and lonely situation than those around them imagine.
The words and actions seen at such times are not meant to trouble others; they can be signs that express anxiety and confusion.
Before trying to stop the behaviour itself, it's important to think about the feelings behind it.
Do they ask again and again because they're anxious?
A person living with dementia may ask the same thing repeatedly.
- What's the date today?
- What are we doing next?
- When is my daughter coming?
Even after being answered once, it can be hard to keep hold of the answer, and they return to not knowing.
Not knowing makes them anxious. Asking and being told makes them feel safe. But they forget the answer and become anxious again.
That's why they may ask the same question many times.
Even if you point out "I already told you", they may have no memory of having asked at all. Being firmly contradicted then can make their anxiety and confusion even greater.
There will be days when answering calmly every time is hard.
At such times, you can try placing a note or calendar with the schedule where it's easy to see, or using photos and pictures as well as words.
Rather than trying to make them stop asking, think about what would help them feel safe.
Even if events are forgotten, feelings remain
There are many kinds of memory.
Memories such as yesterday's events or what was just said can be lost from an early stage.
On the other hand, long-held habits and procedures learned by the body may be relatively well preserved.
And even if they can't recall in detail what happened, feelings such as:
- I was happy
- I was scared
- I feel safe with this person
can remain.
Not only what words you used, but also the expression and voice you used, matter.
Even if they forget what was said, a sense of reassurance such as:
- They listened to me
- This person doesn't reject me
- I'm okay when I'm with this person
becomes the foundation of the relationship.
A correct explanation doesn't always bring reassurance
A person living with dementia may perceive things differently from the actual situation.
For example, when someone in a care facility says "I want to go home", explaining the facts correctly, such as:
- This is your home now
- You can't go back to your house anymore
may not help them feel safe.
In such cases, first try accepting their feelings:
- You miss your home, don't you
- What was your home like?
Try responding like this.
This is to turn towards feelings like "so lonely they want to go home" or "looking for a place where they can feel safe", rather than correcting the facts.
It doesn't mean you have to go along with everything they say.
Before conveying what's right, first accept how they feel now.
That alone can ease tension and make them more ready to listen to what comes next.
There's a reason behind the behaviour
Agitation, shouting, refusing care, or walking about in a person living with dementia are not always caused by dementia alone.
Behind them, there may be hidden factors such as:
- Feeling scared, as if in an unfamiliar place
- Not knowing what is going to be done to them
- Pain, constipation or thirst
- Being tired or not sleeping well
- A difference from their former daily habits
- Feeling they have lost their role
- Anxiety about relationships with people around them
Factors like these can be hidden.
For example, when they refuse to change clothes, it may not simply be that they "don't want to change".
They may be cold, in pain, not understand why they need to undress, or be afraid of being touched by someone they don't know — there may be reasons of their own.
Rather than treating only the visible behaviour as the problem, it's important to think about the feelings and physical condition behind it:
- Are they scared?
- Are they in pain somewhere?
- How can I help them feel safe?
Thinking like this matters.
Look at what they can do
With dementia, those around them worry about accidents and mistakes and are tempted to do everything for them.
But the person still has things they can do.
Long-practised housework, the steps of dressing or brushing teeth, watering flowers, folding laundry — the body may remember these.
Rather than leaving everything to them, ideas such as:
- Doing just the first part together
- Explaining one thing at a time instead of a lot at once
- Laying out what's needed in the order it's used
- Waiting without rushing for the parts they can do
- Helping only with the parts that are a little difficult
can help them keep doing things.
When only "what they couldn't do" is pointed out, painful feelings of failure build up inside them too.
On the other hand, experiences of "I could do it" or "I was useful to someone" lead to reassurance and confidence.
Increasing what they can do is not the only aim.
Listening to music, going for a walk, talking about favourite things, laughing with someone.
Increasing the time the person finds enjoyable is also important dementia care.
Families, please don't push yourselves too hard
When they learn about ways of relating to a person living with dementia, some people blame themselves:
- I've been treating them the wrong way all along
- I have to be kinder
This is very understandable.
But answering the same questions every day and continuing to support someone's life is not easy.
You don't have to always smile and respond calmly no matter how many times.
When you're tired, relying on other family members or care services is also necessary.
What matters is not keeping up a perfect response, but, when there's behaviour that leaves you unsure how to respond, not stopping at:
- It can't be helped, it's dementia
- Why are you doing this?
and instead:
- How is the person feeling right now?
pausing for a moment to think about this.
Relating in a way that leaves the feeling "this is a good person"
Dementia care isn't made up only of ways to deal with symptoms.
- First, accept the person's feelings
- Build a relationship in which they feel safe
- Then think about the support needed
Only with this kind of relationship as the foundation do words of encouragement and daily-life ideas get through more easily.
Even if they forget what was said, feelings such as:
- This person listens to me
- I feel safe with this person
can remain.
Look at the person, not just the dementia. Value how the person feels more than conveying what's right.
Before trying to change the behaviour in front of you, turn anxiety into reassurance. We believe that is an important starting point in thinking about how to be with a person living with dementia.
Go to our care consultation desk*This article was reorganised by Setagaya Kaigo for families, based on the seminar "Dementia care that begins with a correct understanding of symptoms and an understanding of feelings: from 'dealing with symptoms' to 'creating reassurance'" given by Naoyuki Kamimura (上村尚之), a dementia care instructor in Fukuoka Prefecture, at a welfare, care and health fair (in Japanese).
*Symptoms of dementia and how they appear vary from person to person. If you notice sudden changes in words or behaviour, poor physical condition, or serious difficulties in daily life, please consult your family doctor, the community general support center, a care manager or similar.
