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

Things are not what they seem

I have had the pleasure to work with people with Alzheimer’s. During that time I realized that every person is unique, and that there is always something to learn from every one of him or her. As I learnt from Maria with this anecdote I want to share with you:

One morning I entered Maria’s room, she had a gossip magazine on her bedside table. On the cover page was Mr. X (a famous politician). As every day, I asked her how she was feeling, how she had spent the night and how the previous evening had been. She told me her daughter had brought this magazine for her. She also told me that Mr. X had been her university classmate as well as her suitor.

I doubted weather the story was real or just the fruit of her imagination, nonetheless I have always understood that the relationship with the caregiver, me, can never be one of incredulity; there is no point in telling her that her story is a nonsense, no matter how absurd you may find it is. Who are we to break the happy feeling of telling that story on and on!

A few days later, Mr. X appeared on the news again, because he had, unfortunately, passed away.

That morning, as I was assisting María just like every morning, she spoke to me about him again and told me how sad she was for his fatal ending. It was she who took some of the heat out of the issue saying: “poor him, he was very old and he was very sick”. I changed topics.

During a staff meeting after a few days, I learnt that Maria had been a classmate of Mr X. Since that day, I am well aware that the stories told by people with or without Dementia can or cannot be real, but they are true for them and that is what matters. We have to respect that.

PS. The name “Maria” is invented but the story is real. And this is a gift that we, caregivers, receive from Dementia patients. We give them love and affection without their being part of our lives, and they finally become a part of it, in a way.

Maria: wherever you are, receive this big hug from Juan, as she used to call me. I will never forget you. Thank you for helping me improve as a caregiver and as a Person.

Joan Chias

@jfchias

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!

You are perfect

Mom loves to go for a ride in the car. It is not important to her where we are going. For the small price of two hours, I can bring her the joy of being out. She grins, claps her hands on her legs, and when the mountains come into view, she exclaims, “Oh! Look!”

My spirits are lifted when I feel how happy she is. I know I am doing more for her quality of life than anything else I can conceive. Today we took the short drive to a nearby park and found a high spot to park overlooking the water and the mountains in the distance. A former pilot, she spots the contrails and points them out happily. We remark on the clear blue sky on this sunny day in winter. Canada geese fly over in formation and she immediately tells me how many there are in the flock. And there actually are seven, I am astonished to see. She looks over at me and gives me the most loving smile I have ever seen and says haltingly, “You are perfect!”

This is not the first time my mother has expressed in the most clear and pure way how much she loves me, and I am free with my expressions to her. It is easy, as she has taught me in the last few years, and nothing is more important. I think to myself: “Hold this moment! Someday you will need to remember it!” My eyes fill with tears. And then so do hers. We grin rather stupidly at each other, and laugh. It is a perfect day.

Jeanette Rockers

My aunt Cate

When I was 14, I used to stay at my auntie´s Cate twice a week. She is my Italian aunt and lives in Barcelona. She is 83 year old and she currently is at a quite late stage of Alzheimer´s disease. She would not recognize anyone but my dad and she barely speaks. I am sharing my story to pay tribute to one of the most privileged minds that I have ever known and to be grateful to her that at a time when I had so many birds on my head, she filled it up with possibilities and challenges.

My auntie Cate always encouraged me to be curious, to question other realities, to deepen in the reading, to imbue the arts with no judgement, just by symply marveling at other minds and other hearts who some day created a piece of art, a picture or a movie, with no impositions, just showing me new paths to explore.

And although we no longer do any of the things we used to do together, from time to time her eyes would shine again as if she wanted to connect with me to let me know: “I am still here, in a different way, but still here”

Carlotta Chiesa, Barcelona, Spain.

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Photo Credits: Alan Levine CC Atribution Licence Flickr

Moving Your Soul, Another Way To Live With Alzheimer’s

The people we still are by Kate Swaffer

Moving Your Soul, Another Way To Live With Alzheimer's

I believe nothing will change until we recognise it is imperative we all understand the human cost of dementia. It is people with their own stories that have the most impact on achieving change as it turns the whole area of dementia into reality, not just words on a document or report. Dementia care is caring for people who often do not know they need care, and don’t want to be in care; no wonder we may become angry and upset! The changes brought on by dementia are relentless, yet many people don’t see them as disabilities, merely as external symptoms. Many also think it is a mental illness, which it is not. And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, rather than the people we still are… mothers, daughters, lovers, husbands, wives, employees, aunties. It is a tragedy so many just see our deficits.
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“ I´m still here ”

My grandmother lost her ability to speak very quickly, but when she did speak, we tried to maintain the conversation no matter how bizarre it may seem. We knew that even though the words she spoke might not make sense in that specific context, there was something she needed to tell us so we made every effort to make sure she felt us close. It is possible that she did not even understand what we were saying, but we still communicated. I believe it was a way of telling each other: “I am still here.”
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Entering her world

Communication ended up being the most difficult part. I have to admit that it was really difficult for me to put myself in her place and internalize that, as the disease progressed, she moved backwards in terms of knowledge, language and behaviour. I never did understand that what she could do one day, with total normalcy, she wouldn’t know how to do the next. I rebelled a few times, and I even yelled at her, thinking that if I said something in a louder voice, she’d understand me better, when nothing could be further from the truth – the impact was actually the opposite.
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