Nonverbal Communication and Coaching in dementia

In Moving Your Soul we have started a podcast in Spanish, and our second episode is an interview about Nonverbal communication and coaching in dementia. Our special guest is Susana Garcia Pinto, professional coach and trainer, and a member of Moving Your Soul.

“From my experience as a daughter in the intense journey of Alzheimer’s, and as a passionate professional in the fields of human relationships and communication , being part of Moving your Soul makes possible each day the realization of a dream: to be able to show the world that IT IS POSSIBLE, that there is room for plenty of light in the a priori dark path of dementia.”

Susana Garcia Pinto

The Role of Status in Alzheimer’s disease Interactions

As we love this article posted by Evan Bass on his blog, we have asked him permission to share it. And we love it because it talks about something very common in the relationship between family members or caregivers and people with Alzheimer’s: the difficult balance between taking a responsible role to someone who loses her capacities, and giving her all the respect that she deserves.

The Role of Status (Relative Social Position) in Alzheimer’s disease Interactions. Posted by Evan Bass

When approaching relationships in the context of improv theatre, it is essential to keep in mind how your status relates to the other person’s. Is the character you are playing higher, lower, or of equal status in relationship to the other? A butler is lower status to the person he or she is serving. Two butlers are essentially equal status—unless one is the butler in charge and the other is his subordinate. There is definitely a higher and lower status in the roles of a father with his young child. Each interaction we have with others reflects a specific status relationship.

Status is not a passive condition; it affects how we talk to and act with someone else. In general, a person of higher status may “talk down” to someone of lower status, and may not necessarily feel he or she needs to listen well to the other. Someone of lower status almost always listens well to the person with higher status, often attempting to placate him or her. Two people of equal status generally demonstrate mutual respect for each other.

We rarely think about this concept day-to-day, it is almost intuitive, but it is always present. When performing improv in front of an audience, improvisers who want to create believable relationships and situations need to actively think about status in every interaction. So how does this transfer to Alzheimer’s and why is it important? How you relate to someone living with Alzheimer’s—how you enact your status relationship—significantly changes how your interaction plays out.

Try to recall how you felt in an interaction where you assumed you were equal in status with someone, only to find that person “talking down” to you. It immediately makes you feel like you have lost control and, by the end of the interaction, you feel less important. It is natural for a caregiver of someone with Alzheimer’s to feel the need to “take care of” and “protect” the person in times of confusion. When this “protector” takes charge and starts making all the decisions, it results in that person in charge adopting the “higher status” role in the situation and naturally “talking down” to the person being cared for.

While every care partner takes special consideration to avoid treating the person with Alzheimer’s like a child—infantilizing him or her—we inadvertently assume the higher decision-maker status and infantilize without meaning to. An individual who once had control over his life can be lead to feel inferior if that control is completely taken away from him or her. 

Parents of very young children usually dress them, feed them, and make decisions for them while rarely asking the child’s permission for all of the decisions made on his or her behalf. Those with Alzheimer’s are often treated this way as well—having others make most decisions for them. Being grown persons, they not only lose much of the control they once had but also acutely feel that loss.

Returning to the question of relative status and its effect on the person with Alzheimer’s, clearly making decisions for those with Alzheimer’s without asking permission and without getting consent, exerts status dominance over the person. Not surprisingly, then, individuals with Alzheimer’s withdraw from such interactions and communication.

An amazingly simple way to counteract unintended infantilization is to approach every interaction with the idea of “status” in mind. Always treat an individual living with Alzheimer’s as EQUAL to or HIGHER status than you. This means always asking permission before acting on their behalf and never making decisions for them without asking for their consent. This includes, of course, never treating them in a way that would ever be construed as disrespectful (i.e. doing something to that person like dressing them, feeding them, or putting them to bed without their permission). A person can still respectfully help someone in daily tasks, even going to the toilet, by asking permission and allowing the other to do as much as she can herself—giving control back to her (or him).

To ask permission means asking a question, and questions can be overwhelming and cause confusion in those with Alzheimer’s. However it is not questions themselves that are confusing, but rather how the questions are presented that cause the problem. While complex sentences and open-ended questions can cause confusion, avoiding questions altogether leads to removing all control from an individual with Alzheimer’s.

In the Scripted-IMPROV study and the “I’m Still Here” approach, we generally find that asking simple, often binary questions —that is, questions in which two possible answers are provided (e.g., “Do you want to wear your red shirt or your blue shirt?”) – creates a sense of control for the individual with Alzheimer’s. By making the request simple enough for the individual with Alzheimer’s to fully understand and respond, the individual maintains control. You offer the options. They make the choice.

The other type of question that enables the person responding to maintain control is one that allows them to answer with a simple yes or no response. “Let’s eat some breakfast. Would you like that?” is such a question. You first set up the goal in a very simple way, but instead of telling an adult what they have to do, you lead them into it and ask their permission so they can give a simple, “Yes” or “No”, either answer actually controlling the outcome.

When you consider anyone at all at a higher status than yourself, including a person with Alzheimer’s, you naturally do the respectful thing. Even when treating someone as equal in status, you would never talk down or do something without their permission. As we try to “help” others, we unconsciously take on the role of the person who can help, and thus place those being helped in a lower helpless status to ourselves. It is unconscious, and we never mean anything negative by it, but it greatly affects how someone with Alzheimer’s feels around you.

People living with Alzheimer’s already question how much control they have in their lives. Their failing memory can make them even more self-conscious and worried about the control they have over their lives. When we respect a person with dementia by speaking to him or her in a way that makes him/her realize that he/she is of equal or higher status, it goes a very long way. Instead of hurting their self-esteem, we boost their self-confidence. This allows us to forge a meaningful relationship in which they are given the respect that they deserve.

Evan Bass

Image: Liz West

Alzheimer’s Learnings

At Moving Your Soul we have been collecting testimonials for years from great people who have known how to find in Alzheimer’s, beyond the pain and sadness, a reason for joy, growth and learning in their own lives.

Some weeks ago, we started a project, called #fromAlzheimersIhaveLearnt, and for the moment we have received the comments below. We encourage you to participate, in case you haven’t yet.

What have you learnt from Alzheimer’s?

Click here to participate: Learning From Alzheimer’s

What have you learnt from Alzheimer’s?

Click here to participate: Learning From Alzheimer’s

What have you learnt from Alzheimer’s?

At Moving Your Soul we have been collecting testimonials for years from great people who have known how to find in Alzheimer’s, beyond the pain and sadness, a reason for joy, growth and learning in their own lives. We now want to invite you all to leave, in just a few words, what you have learnt from Alzheimer’s.

Share what you have learnt so that between us all we can amount to so much more.

What have you learnt from Alzheimer’s? In your personal experience with the disease, or as family member or carer. Leave your message!

Within the next few weeks we will be creating a video with the most inspiring comments.

If you would like to receive the Video by electronic mail, leave us your e-mail address and we will send it to you.

How to participate? There are two ways:

- Leave a comment below
- Tweet your comment with this hashtag: ‪#‎fromAlzheimersIhavelearnt‬

Thank you for participating!

Moving Your Soul’s Team

A moving book for living with Alzheimer’s

There are books that change our lives, and there are books that can help us in difficult moments, like when we are diagnosed with Alzheimer’s or if we have a person we love with this illness. “I’m still here”, by John Zeisel, is one of these books that help and inspire…

Written by a Ph.D., president and co-founder of Hearthstone Alzheimer Care, this book is very inspiring because it offers a different point of view about Alzheimer’s and dementia in general. Dr. Zeisel’s shows the possibility and benefits of connecting with an Alzheimer’s patient through their abilities that don’t diminish with time. Even with Alzheimer’s, people can understand music, art, facial expressions, and touch. By harnessing these capacities, and by using other techniques, it’s possible to offer the person a quality life with connection to others and to the world.

“The person is there. The person knows she’s there. It is up to others to remember and recognize this always. As the disease progresses, other people are the keepers of that person’s personhood. Those who overlook this contribute directly to the person’s anxiety, agitation, aggression and apathy. Acknowledging the person by words and actions reduces these symptoms.”

John Zeisel has a foundation with the same name of the book, where he develops and evaluates innovative non-pharmacological approaches for people with cognitive challenges. They’ve been more than a decade focusing on creating and implementing inclusive, community-based arts and culture programming.

Which books have helped you? Tell us about one of them! Be social and leave a Reply!

Talking about Alzheimer’s at the Radio

Moving Your Soul has a message, a message for the souls, a message from our souls…

This audio – in Spanish – is a radio program (Mundo Saludable, a spanish program by Beatriz Pieper) where Begoña Guitérrez and Susana García, both part of our team, explain their experience and vision about alzheimer’s and Moving Your Soul. Very inspiring and moving! We hope you like it!

More info here

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Alzheimer’s and personal growth

I never imagined that the most important lessons I would learn from my mother, would be imparted without her even realising it, during the stage of her life dominated by Alzheimer’s.  I am sure she would be surprised too if she knew how much she continues to teach me, from her wheelchair, with her mobility and speech almost gone…

My mother has helped me get to know myself better and every day she shows me my light and my shade without judging me. She invites me to get the very best out of myself and also challenges the most limiting aspects of my personality. An example: that habit of mine of always doing something, of keeping myself active and productive, impatient, always thinking of the next thing to be done.

When I am with her, this doesn’t work.

It doesn’t work because if I want to feel close to her, I must enter into the bubble she inhabits and which is called NOW.  I get to the care home where she lives, I say hello, I search for her eyes, I sit down next to her… and everything stops. Even her afternoon jelly at six becomes an event requiring my total presence.   My mother has taught me that not everything is about Doing, that simply Being is much more important, above all when it comes to creating closeness and intimacy with the people we love.

And this thing that happens to me, this act of confronting my own patterns of behaviour, is what I also see when I hold workshops for relatives of Alzheimer’s patients with the Moving your Soul team.  Other fathers, mothers, spouses, siblings are unwitting teachers of life for these family members that look after them and who, in one way or another, watch over them.

One of them must learn to let go, another to say “I love you”, a third to look after him or herself, or to ask for help… each of us brings to this illness, to this school of life, our own particular notebook, in which we must learn how to write a little better.  To humbly return to the role of student and learn the lessons we didn’t quite get to.

This is why, at Moving Your Soul one of our most fundamental beliefs is:

Opening ourselves up to dementia is also opening ourselves up to the opportunities for personal and relational growth that come with it.

And the fact is that our approach comes from the discipline of coaching, which seeks to unlock the potential of each and every human being, in search of completeness and growth.  Even in the most adverse circumstances of life.

Olga Romanillos

Secret to Being Happy

There are a lot of moments when I feel profoundly connected to my father, and as the disease progresses, the ways and spaces through which we connect adapt themselves without my noticing. Every time I come through the front door of his home, I feel the shine in his eyes, welcoming me, and his limpid smile immediately lifts my soul. So we sit together on the sofa, shoulder to shoulder, holding hands, and we share kisses, happy and calm. And I think: It doesn’t get better than this.

Continue reading

Present simple tense

This illness imposes restrictions on us that demand not only that we adapt ourselves, but also that we adapt our relationships with those we love. As always, we only have ourselves to count on when we have to decide how to confront life. In my case, I always aspire to live my life in the most positive way possible. My relationship with my father has evolved to the point where the only tense we use is “present simple”: the immediate present, the here and now. My father doesn’t like it when we ask him what he was doing just before I arrived, or what plan he has for this afternoon. Not even when we ask him about plans, which will come soon, inside of his routine. Continue reading