Last week HelloCare caught up with renowned dementia trainer, Teepa Snow, who, with her usual positivity and insight, shared some of her advice about how we can improve the way we care for people who are living with dementia.
Ms Snow said society is becoming more tuned in to the needs of people living with dementia, but there is still some way to go before the “fear” and “stigma” are really addressed.
“The unfortunate part is I don’t think it (awareness) matches the occurrence of dementia and so people are almost waiting until it happens to them before they become more aware of it,” she told HelloCare.
“It’s still a scary thing for most people until they are part of the community that is trying to figure out dementia,” she said.
“It’s better, I’m not saying it isn’t, and I think we are working at that, but I do not think it’s where I would want it to be if I were to be diagnosed tomorrow.”
Stand back from the idea it’s the person who is a challenge
Ms Snow said the single most important piece of advice she could give dementia carers is to recognise they are the ones who have to change on the care journey, not the person with dementia.
“Be aware that if you’re wanting something to be different, you’re the thing that has to change,” she told HelloCare.
If you’re in a situation that you are not happy with, or you’re wanting the person to do something differently, you will have to think about what you can change to alter the situation.
“Figure out what you’re doing and how it’s impacting the person. What’s happening in the environment and how could you modify the environment. What’s happening at the time of day. Or is it simply you’re not the right person to ask that particular thing of the person or how you’re asking is creating a challenge,” she suggested.
Carers have to “stand back” from the idea that “the person is the challenge or the behaviour is the challenge,” Ms Snow recommended.
Get the help you need
Ms Snow said carers should also have a plan in place to access help for the times they may need it in the future. “A care partner has to be willing to say ‘I need help’ and to start planning for getting help before you need the help.”
“Having someone you can call… makes it so much easier to get what you need when you need it,” she said.
Finding the right words
We asked Ms Snow if she had advice about the best ways to communicate with people living with dementia.
She explained that at some point, many people living with dementia begin to lose their nouns. They may know they want something, but they may not be able to find the words to properly express what they are after.
In these situations, Ms Snow said care partners have to find new ways to communicate.
“When the person says I need something, the carer can say, ‘well, you’re needing something. Tell me more about it.’ The quick reflection is, I heard what you asked me, tell me about the thing that you need, I’m not making a demand that you name it, I just want you to talk about it to see if, as you talk about it, you can give me some additional clues or cues that I can help figure this out.
“So if they say, ‘I’m looking for something to drink’… (you can ask) ‘do you want something hot or cold to drink?’”, so you can give the person an an either/or option.
“So they might say ‘cold’, so you’re looking for something cold, ‘water or something else?’,” Ms Snow suggested asking. “Something sweet or something different? Something sweet! Are you talking about a soda or are you talking about juice?’
“Now what I’m doing is I’m coming up with nouns but we’re moving together. Who gets to make the choice of what I say? Well, they do. And that actually encourages them to use both language but also decision making, so now, all of a sudden, I’m actively engaging their brain with me so it’s not me giving them the answers, it’s me providing options on the answers,” Ms Snow explained.
If the person says ‘I think it’s juice’, Ms Snow said you can then suggest walking to the fridge to see what’s there. “Let’s take a look and see what’s in the fridge,” you could say, and also “gesture with your hands”.
“I don’t just say the words. I do a do a ‘come along’ signal, and then I point to the kitchen, which says ‘come’ without having to take or drag somebody, and then I point which says visually where we’re heading, and then I point to the orange juice or the soda.”
This way you can arrive at the understanding the person is after orange juice together.
Next is an opportunity for the person to get a glass for the juice. Ms Snow suggests asking the person to go to the cupboard to get the glass, with a hand gesture towards to cupboard and of holding a glass, rather than just getting the glass yourself or saying “get the glass” as the person may no longer understand what a glass is.
“So it’s the art of learning how to have supportive communication,” Ms Snow said.
“If the person has the ability to choose, why not promote her choosing because that is a way I can support her where she is at, rather than take her to a place she doesn’t use those synapses… it’s true that if you don’t use it, you lose it more rapidly,” Ms Snow said.
Using visual cues when the person no longer has language
“If a person doesn’t have language, then I have to use visual cues,” Ms Snow explained.
In this situation, Ms Snow said she would point to the glass, and then point to the orange juice or the coffee?
“Then at least they’re… selecting and associating this motion with what I’m talking about.”
Even if the carer knows she always has orange juice, it’s good to let the person choose what they want. “By you picking orange juice she loses the ability to choose and why not use the synapses she has until she doesn’t have the synapses.
“Then you can use your knowledge that she always drinks orange juice to your advantage.”
Navigating the ever-changing landscape of dementia
As the effects of dementia are constantly changing, it’s helpful to have someone who can help you identify how the symptoms are evolving.
“One of the things I recommend for carers is to have a second party around who can give them some feedback… because if I’m with you (the person living with dementia) all the time, I can totally miss some of those subtle changes until they become big changes and I’m frustrated you’re not doing what you used to do. (But) I missed the transition.”
You can ask this person if you think the person living with dementia’s visual skills or ability to comprehend have changed, or their ability to produce language or their big movement or fine motor skills, and so on.
Do the changes vary from morning to night, from setting to setting, or person to person? It can be helpful to understand the variability of the symptoms, and to think about what might help, how might the carer modify the environment to help, say by reducing the number of options available.
“So there will be a time when I can do a full place setting and still eat a meal and do well with it, then I might need to eliminate some of the extra stuff and… get to where there’s less. It’s based on what they’re showing me they can do, and what overwhelms them, and what’s confusing.
“When somebody I care about is starting to put milk in the mashed potatoes it means if I’m going to provide them with things on the table, I need to present myself and either cue them through using them, or make sure they understand that what’s there is to be taken in as a fluid or taken in as a solid. I can’t just put this stuff out and think that they’ll figure it out.
“Having a partner makes a really big difference in being a care partner. So to say, do you think he still understand what to do with his spoon?”, and to discuss it and talk about possible solutions.
The helper might say, “I noticed when he picked the spoon up he looked at it and then put it back down and then scooped up the mashed potato with his fingers, so I’m not sure he knows what to do with the spoon. I wonder what would happen if you put the spoon in his hand with your hand over his hand and then do the motion a couple of times, would his brain would go ‘Now I remember!’”
The initiation button, for example picking up the spoon to start eating, is found in the pre-frontal cortex, but how you take the spoon to your mouth is a motor skill, which is directed by a different part of your brain, Ms Snow explained.
“The person was a person before they ever got dementia”
Ms Snow said Australia’s recent move to person-centered care was a good fit for people with dementia.
“The person was a person before they ever got dementia, so they will always have dementia on their personhood, not the other way around. I want to know who you were, what was important to you, where you came from, what kind of things you never liked and what kind of things you loved before, because it gives me a baseline at least to work from.
“Yes, you’re changed, and yes, you’re somewhat different, but who you are may still be a very core part of who you are,” Ms Snow said.
She gave the example of someone who has worked outside their whole life, so much so that it remains an integral part of who they are.
“If you need to be outside every day because you’ve been outside your whole life, if I don’t find a location that supports you going outside in a way that’s relatively supported and safe, you’re going to try to do it anyway or you’re going to become very distressed with not being able to do it because it’s just part of who you are.
“And when being outside becomes too much for you, maybe opening the window or opening the doorway so you can see outside or feel the air (might be possible). It may be a smaller amount, but being outside in the sunshine may be something that’s still really important for you every day.
“And knowing that about you makes me more able to provide good quality life because it’s part of who you are.”
Fame as a dementia trainer
It is perhaps a sign of our times that a dementia trainer has become an international celebrity. But her positive energy and down-to-earth style has certainly resonated with people all around the world.
Ms Snow said it always “amazes” her that people want to take selfies with her and ask her for her autograph. She said her appeal may come from the fact that she takes a strikingly different approach to dementia care.
“I’m not doing anything outstanding. I really don’t feel like I’m outstanding – but it’s so not what the status quo is.
“What I offer people is sort of what you already in your heart know but your head hasn’t figured it out yet. I translate a lot of what is neuroscience into practical application.”
“I really get how the brains works and that’s how I can help. I think that’s what appeals to everybody. It’s so practical. It’s not rocket science but it is a science and an art and all of a sudden you feel empowered.”
Ms Snow ended our conversation with one final example of how to improve the care we provide to a person living with dementia based on an empathetic approach.
“What if they can’t sit up on their own? When you want to sit up, what do you do? If I can’t pull myself up, I might roll to the side. Well, have them push with their foot and then roll onto their side, and have them sit up, and then have them sit up on the side of the bed.
“Why are we trying to pull them up by the back and drag their legs off, because that’s actually pretty scary?”
Ms Snow appeared as part of the Early Onset Dementia Alberta Foundation’s 6th Building Dementia Awareness Conference, which was held in Alberta, Canada, on 20 September 2019. HelloCare was a media partner at the conference.