Alexane Roy, a French musician, educator, and elder care professional, has learned from the ground up the challenges and joys of improving life for those struggling with cognitive decline. Newly translated from French, her successful book, Living…Loving in Alzheimer’s Land, is an approachable, thoughtful, robust guide for anyone caring for a person with dementia. An accompanying activity workbook, EnLIVEn In Alzheimer’s Land: Recreation and Communication Guide Through Neurocognitive Disorders, presents helpful exercises to put concepts into practice. To order a copy, please contact info@alexaneroy.com. We spoke recently about creativity and caregiving. 

Dan Cohen: Creativity plays a large role in your approach to caregiving. Why have you chosen this framework?

Alexane Roy: Life is all about creativity. I don’t know about you, but for me it’s like a birthright to express who you are. Life without creativity is lacking colors and spirit. Every child loves to invent things when they play and to dream of all sorts of things. We just become so serious getting older.

In gerontology they are always telling us to respect the identity of the person. That sensitivity is a close sister of creativity—you have to open your heart to be able to hear what you need to do, creatively. Not as an artist, just as a person taking care of somebody else. And if you listen to your sensitivity then you can better listen to what you could do. You have to improvise sometimes. I see creativity as asking, how can we do this together? You don’t have to do it always the same way, daily grooming, cleaning, whatever. Maybe you will have amazing answers. Maybe you’ll be surprised at what you hear. As a musician, of course, creativity holds a large piece in my life, if I can express myself this way. But I think everybody can have access to that, and I love to trigger that in other people, because beautiful things happen.

DC: What I’m hearing you say is that there is plenty of room for creativity in caregiving. It’s not just a drudgery kind of job, though some might view it that way. Someone might be hired and that’s their job to feed the person, clothe them, groom them; but there’s so much more that’s possible in the interaction.

AR: Right. Even with the same actions that you do every day, even if you feed the person, that person is different every day. Sometimes it’s small differences. But you can adopt an attitude and openness to what is today and how can we do this even if the person doesn’t talk.

It’s so beautiful to see when caregivers begin to use their creativity. And it’s very important to general health, because if you get into a habit that you don’t question anymore, it just becomes boring. So if you can keep a creative approach alive, it’s very, very helpful for both the caregiver and the person receiving the care.

DC: So how does someone assess whether their caregiving is effective or appropriate? What are the signs to look for in how your loved one is receiving your care? How do you know, what are you looking for, what is it that helps you know you’re doing the best job possible?

AR: I could answer that question with specific things like eye contact, smile, and all, but the last part—person receiving care—for me, it doesn’t make any sense to receive care. In my head and heart someone cares, or they care less, or they don’t care at all. And when someone offers care, it means for me to try to offer collaboration, because for me care has to be collaboration. If it’s not, then I think we’re missing the point and we’re just not taking care.

If someone is far advanced in Alzheimer’s, people will tell me you can’t do anything. But even with your eyes or even with your attitude, and maybe some touch, you can. Before touching someone who’s very advanced, if you knock at the door, if you acknowledge the person, the fact that you are coming into their privacy, even if they don’t talk and if they don’t respond, I think the way you present yourself can make the whole difference.

You have respect. You offer. You say what you are going do to. You take time to make eye contact if you can, a tender touch. I think that’s where the answer lies. Do you take the time to respect the person, or do you impose what you have to do? It’s a matter of feeling. Most human beings can feel if they’re connecting with a friend, a lover, or when the connection is gone and loving words are not uttered. Same thing here. Ask yourself if you made this connection. It’s the same thing when I teach, connection first and teaching after. If I don’t make a connection first, trust me, they’re not going to learn anything.

DC: So we’re not looking for an outcome. We are looking for the process, the approach and the interaction to be as good as it can, and everything else will flow from there.

AR: Yes, I think connection has to come first and then attitude. If you consider that person to be a person even if they don’t talk anymore, that can make all the difference.

DC: How does your approach to care nurture both the individual with Alzheimer’s and the caregiver?

AR: Again, I think the answer lies in the word ‘collaboration.’ If someone in need of care feels you just want to impose your way of doing things without considering or even making eye contact first, it cannot nurture anyone. The caregiver or healthcare worker becomes just a robot on automatic pilot, and the person in need of care either reacts badly or sadly accepts what is. It’s empty. No connection.

So instead of giving orders and complaining, have patience, let go of the things that you can’t control, accept what is. The most difficult thing for me, and I think for others, is remembering that the persons in front of you are doing the best they can. Home care workers may lose patience because they think that person is trying to manipulate them or is doing this on purpose just to make them upset. Although that could be possible, it’s better to think that, with all they’re going through, they are doing the best they can. It’s easier to stay calm.

DC: How does that attitude nurture the caregiver or the care partner? I guess just by knowing that they are connecting well, and they are empathetic, and they are taking their time and being present, then the caregiver also benefits. When you give, you receive.

AR: Yes. And beyond giving and receiving, because sometimes you don’t receive a lot. But if you feel that you’ve made a connection, you’ve had collaboration instead of fighting with the person, or even if the person doesn’t collaborate, and you succeed in staying calm, I think that’s nurturing. When I succeed in staying calm with an Alzheimer’s patient, it nourishes me. I don’t lose as much energy.

DC: How do music and other arts fit in your approach?

AR: Neuroscientists can now demonstrate the power of art and music on our brains, especially how music stimulates those areas of the brain where language and emotion are processed. I advise people to use their imagination, whether it’s with music or drawing or anything, and to create something out of an intention, an emotion. I’m teaching now in schools, and I asked my students to compose a song or music that is dedicated to someone. I try to trigger their intention of being nice to someone. I think we need to develop that empathy. I think music is a great way to do so.

You demonstrated how a non-musician could use music in a wonderful way to bring happiness and comfort. I wish people all around the world could see what you actually did with music. You used a tool, an iPod with people’s favorite songs. You established connection with the people. That’s how I think music and art should be used. You offered. You were interested in what they had to share. Whether it’s music, art, a game, or anything else, for me it’s a tool. But if there’s no connection with the person, the tool is not very powerful.

DC: What if you are a caregiver for someone and you’re not very musical yourself and you don’t really know how to work these devices, let’s say a spouse of someone who’s over 80, how do you bring music in? I guess you could sing. There are a lot of ways, actually.

AR: Especially with someone that is your spouse, I wish everyone would dare sing something as simple as a lullaby. I know some caregivers who do that, and it’s amazing what comfort it can bring; just by humming a tune when the person is going to bed, or anytime during the day, or just dancing a few steps with the radio on, you can put smiles on people’s faces. Even if you’re not a good dancer or singer, music, and especially, rhythm is a very powerful tool for our brains’ health.

DC: Is there a role for play in caring for a loved one with neuro-cognitive decline?

AR: Not only in caring for a loved one, but I truly believe that if all healthcare workers and caregivers would integrate play in their care, everything would go better, especially in special care homes. When people are quite advanced in Alzheimer’s and they don’t talk anymore, if you just play, dance in front of them, make a fool of yourself, but in a positive way, that is part of play. Most of the time, they don’t have access to logic and reasoning anymore, so having to answer your questions becomes difficult, sometimes impossible. It is too hard for their brains. I’m convinced it would lower the number of crises and arguments if everybody would accept to play and dare to play. It is a natural way of being human and connecting.

Like I said earlier, we get so serious getting older. When we work, we forget how to play, but it can save us a lot of energy; it can help us solve problems and face issues. It’s important to add something that you need to be careful with—I’m not talking about infantilizing the person, or using jokes they can’t understand. These are older adults, not kids, so don’t resort to baby talk to play.

Daily grooming is no fun. Not being able to control your bowels is no fun. But I think we can enjoy each other’s company by respectfully sharing a nice chat. Of course, you have to consider someone’s habits, life story and tastes; what’s funny for one person can be sad or horrid for another. If they like dancing but can’t do it anymore, dare a few steps. You can also bring an object that can trigger a nice memory and occupy their mind while you do what you have to do. You can offer so much pleasure with simple things so both of you will be nurtured. Pleasure in play is one of the great keys to collaboration.

DC: When there are differences in culture, it just adds a little more challenge?

AR: That’s a tough one. I have seen those challenges a lot in care homes in the Montreal area, and I know they occur in other places in the world. I always say to healthcare workers to learn a few song excerpts in other languages. And if you don’t know any, remember, smiling is international; dancing is, too. Just humming a few notes can be something very soothing when you don’t know the musical tastes of the person. I know people who have been using their phones and playing the country’s national anthem with amazing results.

When I was pregnant with my son and walking in the streets of Montreal, I was often surprised by women from all cultures looking and smiling at me. They weren’t doing that before. I guess they could relate because there was a connection now between us? We were mothers. I think, in caring, if we find those things that are the same between us, showing your kid’s picture, your dog’s picture, you can make that connection across cultures.

DC: What do you say to caregivers struggling to balance work and family responsibilities, about taking care of themselves and taking care of the other?

AR: First, I say it takes amazing courage. This is very hard. It doesn’t make sense that you have to do both. It’s important to realize, as well, that you get help. Do you need to talk? I’m here. There are associations who offer support. Do you know you have some choices? There are some choices that are very hard to make: the moment you start thinking about a special care home because you can’t offer proper care anymore, that’s one of the hardest choices. Do you listen to yourself? Because if you forget about listening to your own needs, then you can fall, you can be sick, and then you won’t be able to help the person. In the activity book I co-wrote with a recreation specialist, you will find things to do in order to take care of yourself, even if you think you don’t have time. While you do the dishes you can dance. You can meditate. Simple and accessible things.

DC: Why did you feel there’s a need for an activity book?

AR: There’s a lot of information about Alzheimer’s. There are places you can go or call to talk about what you’re going through. But I truly believe that the thing that’s lacking is learning how to relate, make connections and engage in activities with people facing cognitive issues. The book can help, but the most important thing is to practice what you read. You might need to have feedback. You will probably need to try again sometimes. You will surely need to talk to someone regularly in order to optimize your journey in Alzheimer’s land.

To change habits and to develop a new savoir faire, as we say in French, calls for your creativity, your imagination, your observations, and your capacity to feel what’s going on inside you. Then you can start feeling what’s going on in the other person’s mind and how to grow the relationship even during the daily grooming. When the person feels safe, like Judy Cornish said, they collaborate better.

DC: Since you’re not there with people, and if somebody is reading this or your activity workbook, what’s the most important thing you could tell them? Sing?

AR: Singing is powerful. I understand it can be easier to do it at home, but I wish more and more people would do it in special care facilities. Healthcare workers may laugh, but they won’t laugh for long when they realize you have more collaboration with most people using songs. Perhaps ask yourself what’s important: not to sing because you’re shy and miss an opportunity for collaboration, or just concentrate on love and connection even if it’s scary? Repetition is the key to success. The first time you may be traumatized. The second time you will probably still feel scared. The third time, maybe just a little nervous. After that, I’m confident it will be a piece of cake for you, and you will allow for others to use this amazing tool that is your singing voice. It’s just doing it. I’ve had the pleasure to see that happen many times. You can do it too!

DC: On your book and your activity book, to what degree does one require the other?

AR: Of course, if you read the book first and the activity book afterwards, a lot of things might be easier for you because you will better understand how attitude, sensitivity, and creativity can be developed. But some people are just naturals. For them it is easy to use imagination, but they just need some suggestions. In both the book and activity book, we show a lot of scientific research to support what we were saying, and there are links to that research if people are interested.

DC: Last questions: What are the three most important things you would advise caregivers to do when caring for someone with dementia? Also, what would be the three things you would advise people to avoid?

AR: I would go with: breathing in and out to stay relaxed, use eye contact, and offer a smile. You might need to use touch if you have no reaction or if you see that the person’s eyes are closed or not watching you; to wake somebody up, touch on the side of their arm. These are the three things I would do in order to create connection. After that, go with what the person likes and you like to do. I would add three things to remember: always be ready to change the plan; accept what is and do the best you can; acknowledge who you are and who the other person is, so you can find things that you both like.

Three things to avoid: questions, commands, and too many words. I would like to add a fourth one: move too briskly. So many times, I’ve seen people be startled. Because of perception, sometimes they don’t see someone in front of them. We need to take the time to just slow down to make sure that they’ve seen us before doing or asking anything. I think that’s important.