What not to say to someone with dementia

An ancient proverb goes, “A word fitly spoken is like apples of gold in pictures of silver.”

Often we human beings want to say the right words at the right time, be it to inspire others or to brighten someone’s day, but have we ever thought about what not to say?

When someone we care about is dealing with a difficult ordeal, we want to offer practical advice or comforting words with the right intentions. However, poor choice of words can hurt rather than help the person who is on the receiving end.

Speaking to someone dealing with a progressive medical condition like dementia can be challenging, especially when the conversation doesn’t make sense for either party. Take the time to educate yourself about the medical condition and learn to navigate conversations with someone living with dementia.

What you need to know about dementia

It’s important to gather the facts, signs, symptoms, and myths for a start before you learn to adapt to their condition and changing behaviour. Here’s what you need to know about dementia.

What is dementia?

Dementia is a syndrome in which there is a deterioration in cognitive functions. In other words, the medical condition causes the brain cells to die at a faster rate than normal.

There are many causes of dementia and they affect people differently. Alzheimer’s disease, for instance, is the most common cause of dementia, accounting for 60-80per cent of dementia cases.

Contrary to popular belief, dementia, while more prevalent among older adults, is not a part of normal ageing. If someone develops dementia before the age of 65, they have what is known as young-onset dementia, or alternatively working age dementia or early-onset dementia.

The National Health and Morbidity Survey 2018 found that 8.5 per cent of Malaysians above age 60 have dementia.

What are the symptoms?

The most common symptom of dementia is poor memory. Other warning signs include communication problems, decreased judgement, changes in mood, and withdrawal from social activities.

People living with dementia do not all experience the same type of symptoms. The nature and severity of the symptoms progress over time and change across the stages: mild, moderate and severe. As they each have their own unique experiences and life stories, let’s treat them with respect and dignity.

What not to say to or about someone with dementia

Now that you’ve learned the basic facts of dementia, let’s take a look at five choice phrases and questions to avoid saying when speaking to or about someone with dementia.

“Do you remember me?”

This is an honest mistake often made with the intention of showing courtesy, typically common among us Asians when visiting a distant relative or an old family friend.

The short (and simple) answer is no, but asking this question can lead to feelings of disappointment or embarrassment as the person may not remember, but is able to recognise that they’ve lost memories. Similar questions to avoid are “Do you recognise (family member/friend)?” or “Do you remember (event/time/place)?”

“What did you do yesterday?”

This may be fairly obvious, but not only does this question involve remembering something from the past, but it is also open-ended which could cause distress to the person with dementia if they struggle to give a definite answer.

You may also want to refrain from asking things like, “What do you want to do later?” or “When do you want to watch a movie?”

“I’ve something planned for us to do today. I’m taking you out for some nice breakfast, then we’ll go to the pasar pagi for groceries before we head to the park.”

It’s nice when a loved one takes the time to plan for the day. However long, complex sentences can be difficult to grasp, much less to remember.

Avoid using too many commands and details that would leave them feeling confused or worried about what will happen next. This may leave room for assumptions that are not helpful to the individual.

“She is wandering about.”

When talking about a person with dementia, avoid using labels or stereotypes that might sound inappropriate or downright derogatory to describe them or their behaviour.

For example, the term ‘wandering’ implies movement without purpose. As a matter of fact, he or she may have a clear reason such as looking for somebody or something, but they may not be able to express it well. Use ‘walking’ or ‘walking about’ instead.

“His symptoms are getting worse.”

Be careful when using words that are negative or pessimistic about a person or their situation. Words like worse , difficult or tragic can be painful to hear. It’s all about perspective:

We can avoid being direct and still be truthful when we choose to speak positively about something or someone. Other words to eliminate from your vocabulary are outdated terms like ‘senile’ or ‘demented’.

Tips for navigating a conversation with someone with dementia

You’ve heard the saying, “If you don’t have anything good to say, don’t say anything at all.” If you can’t find the right words to say, find out what you should say instead! Our words matter.

Whether you are an experienced caregiver or someone concerned for a recently diagnosed loved one, always remember to respond with grace. Perhaps you’re worried you may run out of things to say. We’ve got you covered with 5 tips for a meaningful conversation with a loved one diagnosed with dementia.

1. Take one step at a time

Avoid overloading your loved one with a list of questions or commands. Make it your goal to create a meaningful conversation or moment with the individual and make adjustments to meet his or her needs.

Be very patient with the person with dementia and repeat your words if you have to. Give the person time to process and respond before continuing the conversation.

2. Keep your sentences short and simple

Take the pressure off your loved one by breaking your sentences into simpler language and shorter, easy-to-follow commands.

If you must ask a question, be as direct as possible so that your questions do not have a right or wrong answer. Keep your questions close-ended so that they can give you a ‘yes’ or ‘no’, for example, “Do you want to put on your shoes?”

3. Use positive language

Using positive language can empower and uplift. When referring to the individual, you can use “person with dementia” or “person living or diagnosed with dementia.” When referring to the act of providing care, use phrases like “supporting a person to the toilet,” instead of toileting.

However, be careful not to use the terms too often so that it becomes another label. Experts say that if you are unsure of what words to use, or how to talk about someone, you can ask them what they prefer.

4. Try to relate

It is human nature to want to belong and feel understood. One great way to help build their confidence and self-esteem is to practise good listening and try to relate to their situation. Perhaps they express frustration when they’ve forgotten something.

You can reiterate what you understand. You might say, “You must feel frustrated. That’s okay, it’s happened to me before.” You can also thank them for sharing their feelings with you to help them feel appreciated and less anxious.

5. Focus on the present

To be present means to be completely engaged and conscious of the moment, physically and mentally. When caring for someone with dementia, it is important to give them your full attention: Face them, look them in the eye, and be mindful of the conversation.

Remove any distractions and if possible, try not to speak in a crowded room. When you are holding a conversation with the individual, maintain your focus on what’s happening in the present, not what was in the past or what will be in the future.

Bonus tip: When appropriate, you can use visual aids or prompts, such as pictures or objects, to help guide the conversation. For example, if the conversation is about an activity like a crossword puzzle, place it on the table for them to see and then ask if they want to play.

Sometimes, each visit may feel like the first time for a person with dementia, even though you’ve been seeing him or her several times a week. It may be good to introduce yourself again each time.

Persons with dementia often prefer a consistent and established routine. Recall what worked in past conversations with them. If they were very receptive to a type of activity, you can repeat the activity again to keep their brain active and healthy.

Showing grace to someone with dementia

Caring for someone with dementia can put a huge strain on the caregiver’s physical and mental health. Supporting your parent or family member with dementia could strain, at times to breaking point, the relationships with other family members.

If you are going through a rough patch, remember that you are family and you are to support one another.

How you respond to or behave around them will make a huge difference in the way that they experience living with dementia. Be mindful to treat them with dignity and respect. Together, we can bring about a lasting change in the world of dementia.

Caring for someone with dementia in the Covid-19 lockdown

Living in close quarters with your family for extended periods of time can be physically and emotionally draining, especially if you are someone in the sandwich generation.

With your ageing parents needing support and your growing children calling for attention, stress and anxiety come knocking at your door. Particularly when you live in a small space where everyone is present 24/7 at the same place and at the same time.

That is why it is important to hit pause and reflect on the situation. When you feel the tension rising, remove yourself from the situation by going to a nearby park or somewhere private like your room to calm down and gather yourself.

Doing so can help you think straight so you can understand the situation better and know how to respond in a reasonable manner.

ALSO READ: What happens if my parents get dementia?: A step-by-step guide

Find help to cope with caregiver burnout

Caregiving is a long-term process. While we might hope to see an immediate improvement in our loved one’s well being, the process takes time especially with a progressive condition like dementia.

As the syndrome progresses, so will the needs of your loved one. But don’t let that take a toll on you — recognise the signs of caregiver burnout .

Looking for dementia care support or long-hour care? We can help. Our team of qualified doctors, nurses, caregivers and therapists can provide quality holistic care to you and your loved ones. You can save up to 20 per cent with our care packages for multiple sessions too. Get connected with our Care Advisors to find out more.

This article was first published in Homage.