There are as many opinions about this as there are hot dinners in my house in a year, but the following points are the ones I’ve found useful along my journey with mum. Many a time I have gone in and used a sentence that might have two meanings, leaving her in difficult with understanding or processing what I’ve said. With experience, you learn how to communicate to get the best of out your relationship, but it means accepting certain things we take for granted.
Think about this. We walk up to someone we know well, and say hi, then start to tell them a story of something we’ve been up to. They look at us blankly, or like we have two heads, or have grown a knarly horn sticking out of our forehead. Then we might think they are being rude, or just pretending not to know us….
Take a step back. Think…..
- Do they recognise you?
- Do you need to say hello by introducing yourself each time, eg, “hi, it’s Lesley, how are you?”
- Is your manner friendly and open, or cold and challenging. Consider the tone you use.
- Can they see you properly? Is it too dark in the room?
- Do they have sight perception problems? Some people with dementia find difficulty with recognising the image in front of them. They might see YOU, but their brain might show them a different picture.
- Can they hear you properly? Do they need hearing aids that they don’t wear?
- Are they easily frightened? Try to come into their focus with slow movements so as not to startle them.
- Do they prefer to be touched? Would they have shaken hands, air kissed or cheek kissed close relatives? If they move away as you approach for a cheek kiss, then step back and give them the space they need to process what is happening.
Background noise can be frightening. Reduce the noise to have a conversation or to allow them to concentrate on you. Remove noisy appliances while you try to communicate, and don’t do housework with a hoover, music going and several people talking at once.
Understand that someone with dementia may be frightened, and the first response to fear, is attack, whether physical or verbal. It takes two to argue, so simply do not get into an argument.
Relax with what you are doing, and your calm confidence may instill trust. That means changing your body language to suit their needs. As each person with dementia is different, your approach with different people, should be tailored to their needs.
Practice breathing techniques, and allowing them more time to think about who you are and what you have said. We tent to have conversations that are non stop, is that one person speaks and the other answers instantly. With dementia, they need extra processing time, and if you speak too quickly, in order to fill the gap, they will lose the chain of thought they are trying to grasp, and may become distressed, angry or just give up.
How Are They?
We know how we are feeling, but we don’t know how they are feeling. Again, it’s simply a need to slow down, consider their situation, demeanor and needs.
- How are they feeling?
- Are they distressed, happy or sad?
- Are they anxious or angry?
- Do they understand jokes, nuances and idioms? Speak clearly and with simple language, but do not use a childish voice, or they may be offended.
There is nothing more frustrating for a caregiver than to be asked the same question a hundred times in an hour. I’ve heard this issue brought up many times over the years, and always in relation to caregivers who think the repeats are annoying for them, irritating, or are done deliberately. Believe me, if they could lose the dementia, they would. What is happening is that their memory reset time is shortening. This is the amount of time their brain allows them to hold onto new information. This can literally go down to seconds, and what is annoying to a caregiver, is actually a brand new question each time for the person who has dementia.
- Answer the same way each time and do not change your tone. They cannot help forgetting, but we can help how we react to it.
- If they cannot retain new memories, it is not fair to say things like, ‘I just told you that.’
- Do not use the word remember. Extinguish it from your vocabulary…..forever…
- If you are stuck in groundhog day, change the subject and try to change their focus from something they cannot remember, ie the new memory, onto something they already know.
Listen and Look – Yes. Really Hear & See – Not Just With Your Ears & Eyes
If you’ve considered how they are, your next steps are to consider what they are actually saying, and how they say it, as well as how they look.
- Body Language – Are the angled towards you or as if they are looking to make a speedy getaway?
- Facial Expression – Are they smiling, looking confused, angry or irritated?
- How do the words sound? What tone are they using? If the words are garbled, can you make sense of what they want without having to ask again?
- Are they breathing heavily or are they calm?
- Don’t read a deeper meaning into words said. Our perception of words is not theirs.
When Speech Is Limited – Consider Feelings
As dementia progresses, speech and language becomes ever more difficult for them to carry out and process. Words they’ve used all their lives will be tricky or impossible for them to remember or use in the right context. Words may reduce to very few, even down to one or two at a time.
For me, the word I hear most often is ‘mum.’ My mum has come to know everyone who cares for her, and is female as mum. It makes sense, as it’s the name where she finds comfort. She doesn’t remember me as an adult, so cannot use my name in that context.
Instead of asking how, where or why, consider how they feel in a response as they will remember feelings. Mum never remembers being out to a coffee shop, not even 5 minutes after we’ve left the tearoom, but how that visit makes her feel, ie happy, chirpy, chatty, stays with her all day.
- ‘you look happy.’
- ‘you look sad.’
- ‘you look sore,’ NOT ‘Are you ok?’
- ‘where is it sore?,’ NOT ‘Are you sore?’
- ‘what would you like to eat?’ NOT ‘are you hungry.’
- ‘what would you like to drink?’ NOT ‘are you thirsty.’
As our loved ones regress to earlier periods in their lives, doing a little research into their lives, histories and events helps to communicate with them. Knowing where they worked allows us to bring feelings of those times to the front, and help communicate better with people who are struggling or living in their own little sterile environment in their heads.
The ‘Home’ Issue
Finding the rights words will become difficult and attaching feelings to conversations helps them to connect. When they say they want to go home, it tends not to be a house as such, or it may be a home they lived in as a child if they felt safe there. It’s usually related to a feeling of safety and comfort, and when they say that, they are looking for you to reassure them.
- Don’t say you are home, as they may not recognise the physical house or room the are living in, and they could become more distressed.
- Distract if possible, by moving to a new subject and changing the focus of their current need for the feeling of comfort.
- Redirect to discuss happy times when they were a child.
- Reassure…..by finding methods to give them comfort, ie perhaps through music, going outside, watching birds, and at later stages, consider doll and animal therapy.
Try and jigsaw their past and current situations to help understand what they are trying to say. The longer you spend with someone, the more in tune with their feelings you become. Spells of interrupted care or constantly changing caregivers become stress and flash points, as they ‘feel,’ out of control, unsafe and cannot build a rapport with new faces each day, who know nothing of their history, nor how they usually communicate.
When You Can’t Figure It Out
Sometimes, there is no option but to try and guess what the other person has said. Try and keep it simple and see if there is a response or reaction from them, and take it from there. It’s about compassion, and allowing them to be heard.
Don’t tell them they are wrong. We aren’t looking for them to learn new things. That is only of benefit to the carer, and none to the person with dementia, who will struggle to retain the information, and will set you off on groundhog day again. There is a pattern here.
I mentioned this earlier. Arguing takes two people, and gets nowhere. It’s a waste of time and energy and will give the person with dementia bad feelings, which can lead to aggression, at times violence, but mostly, a bad feeling, which will remain with them for far longer than the time it took for the argument to happen.
Sometimes, they will accept your point of view for the sake of peace, but let it go. Change the subject and move on. Nobody wins when confrontation begins.
People with dementia still have their full range of emotions. That does not leave, as they are very much tied into feelings, and feelings stick around, even if they aren’t sure why they are having them.
- Let them cry and cry with them if you need to.
- Tell jokes, laugh at their inappropriate ones.
- Support them when they are sad, anxious or grieving.
- If they have forgotten someone died, don’t remind them if at all possible. Distract, redirect or reassure. A compassionate lie may save their grief.
Watch for signs that they are tired and have had enough. The effort of trying to understand what we say, and then search through to try and find an answer, all day, every day, is exhausting. Let them rest when they need it.
Communication is vital to the very last minute. Never stop or think they don’t understand. Sometimes they understand well, but can’t formulate the words for an answer, or may not be able to speak any more at all. Hearing is the very last thing to go.
At The Very End
- Don’t tell them it’s ok to go, that you will be ok, or it’s time for them to meet old family.
- Don’t talk about their death where they can hear, or mention things like ‘it’s close to her time,’ ‘not long now,’ etc etc. Really. Don’t. They may still be able to hear. They can’t go until their body stops them breathing.
- Don’t risk distressing them in the final few moments when there is no way for them to respond, or show emotion or fear. Keep the noise level very low with subtle lighting, and be respectful and compassionate.