By Oran Aviv, Certified Validation Teacher, Creator of Hands-on Dementia
I have not lived in the US for over 40 years, so I am often unfamiliar with more recent language developments, especially English acronyms and politically correct terminology.
A few years ago, I was surprised by the frequent use of the term “agency,” which refers to the capacity of individuals to act independently and make their own free choices.
I now embrace this important term, recognizing its significance in empowering individuals, especially those who are living with dementia. Agency is one of the most important rights for these individuals, yet it is often taken away by those who believe they are providing support.
The concept of “agency” contrasts with "structure," which refers to the rules, norms, and institutions that limit or shape an individual's actions.
Unfortunately, “structure” tends to dominate not only in Senior Living Communities but also at home, where family members’ “help” can often turn into “taking over” Today’s blog post highlights the importance of agency and how we can restore it to help those living with dementia remain independent and in control of their lives.
Are You a Care Partner or a Caregiver?
At the 3rd Validation World Congress this year, in the first session, participants living with cognitive changes addressed the question: "What do people living with cognitive change want from care partners?" Watch the session here.
All the participants emphasized the importance of their care partners allowing them to retain agency over their lives. They expressed that during the early and moderate stages of dementia, they want a “care partner” who will either allow them to make their own decisions or collaborate with them in decision-making. In the later stages, when they can no longer make their own decisions, they will need a caregiver to make those decisions on their behalf.
Many participants felt that a care partner understands their needs and wishes, while a caregiver often lacks a way of communicating and the ability to understand them.
Steven Barbieri, a retired VP & District Manager at Wells Fargo Bank, shared his frustration when others talk about him rather than with him. He encapsulated his sentiments with the statement: "There is nothing about me without me," meaning that discussions about him should always include him.
Distinguishing between a care partner and a caregiver is important. A care partner empowers individuals to maintain their agency, fostering a sense of independence and dignity, while a caregiver should only step in when decision-making becomes too challenging.
The Importance of Remaining Independent
Wendy Mitchell, diagnosed with early-onset Alzheimer's at the age of 58, refused to let dementia take control of her life. She found innovative ways to challenge or, as she called it, “outwit” her dementia.
Choosing to live alone, Wendy maintained her independence for 10 years after her dementia diagnosis, by relying only on herself and by using technology to help her remain independent. However, when observing her friends living with dementia, Wendy noticed that when a family member took over tasks, it often led to a regression in the person with dementia. By staying self-reliant, Wendy was able to preserve her sense of agency and autonomy.
You can learn more about Wendy Mitchell's inspiring, post-dementia diagnosis life which included authoring 3 books, writing a daily blog post, and sharing photographs of her daily walks, in a previous blog post here.
No Choices, No Agency
As part of our Memory Bridge Retreat in June, each of us was paired with a personal buddy—someone living with dementia—whom we visited daily at their senior care community and with whom we developed a personal relationship.
This senior community was considered very progressive. The staff was exceptionally kind, respected the residents, and communicated with them on a personal level. The home even has an adjacent preschool so there can be intergenerational interactions.
However, despite the community's progressiveness, we gradually realized that the residents lacked agency in many areas of their lives.
In the dining hall, a sign showing the breakfast menu also dictated what residents were allowed to eat:
1 egg
2 slices of bacon
1 piece of toast
The residents had no choice regarding what they wanted to eat or how much they wanted to eat. (Read our blog post about The Dementia Village where residents not only choose their desired breakfast, but may help make it themselves. Residents at Village Langely retain full control over their lives and enjoy their independence.)
Additionally we saw that the residents often had no say in their daily activities. Almost every day, they were required to attend the same singing activity, singing the same songs in the same order, accompanied by a CD.
As you can imagine, the 12 dementia professionals who were very protective of their buddies did not sit by quietly.
We asked our buddies if they wanted to stay and sing or go elsewhere.
When the singing began, the multitalented Kareen King asked to turn off the CD player and instead played the piano to accompany the singing. The whole atmosphere changed, and most residents preferred staying for this lively singing activity.
With years of experience in Senior Care, social worker Joanne Walsh Maletta added some engaging content to the songs they sang. For example, she asked the residents, after singing “Don’t Sit Under The Apple Tree,” if they would sit “under the apple tree with anyone else but their Honey.” This allowed residents to contribute to the activity, and they laughed at the answers.
Several of us invited the residents to stand up and dance with us. Many reminisced about how they used to dance with their partners at clubs when they were young.
We gave the residents choices—to sing, to dance, and to answer questions. We gave them the ability to decide what they wanted to do that day rather than being told what they had to do.
By giving the residents agency, the atmosphere that day at this Senior Community was very different and exciting.
Empowering Residents
Dr. Cameron Camp, who developed The Original Montessori for Dementia Training®, has demonstrated how the Montessori Method can be applied to empower individuals living with dementia in senior communities. One of the key strategies is the formation of resident committees.
These committees allow residents to make decisions on a variety of topics, such as planning outings, choosing meal options, and welcoming new community members. By involving residents in these decisions, they maintain a sense of agency and control.
As Maria Montessori famously said, "Everything you do for me, you take away from me."
By empowering individuals living with dementia to take control of their own lives through decision-making committees, they can maintain their independence and agency.
To learn more about the application of the Montessori Method in empowering residents, check out this previous blog post here.
Queen for an Hour – What Would You Do?
This week, while at the Adult Day Care Center, one of the visitors, Mrs. H., was very agitated. Her live-in caregiver/partner had left to visit her family in the Philippines. Although Mrs. H. has a lovely replacement, the temporary change is causing this older woman much stress. Wouldn't you be stressed if a person you didn't know suddenly moved in with you?
When I sat down to speak with Mrs. H., she was very upset, wanted to leave, and complained that "they" were doing things without telling or explaining what she needed to do.
Mrs. H. spoke, I listened, and I understood that she was very upset because she was not being heard and was always being told what to do.
I took her to a quiet area so we could talk and had her choose which chair she would like to sit in—allowing her to have agency over her decision.
Because the chair had a soft red cushion, I told her that she looked like a queen today – “A Queen for the Day.” She laughed and said she was a queen for an hour.
So I asked her, "What would you do if you were a queen for an hour?"
The question first surprised her. She seemed unable to imagine what it could be like to be in charge.
After a moment to organize her thoughts, Mrs. H. answered, "I would find all the good and pass it on to others."
When I rephrased her answer (one of Naomi Feil’s Validation Techniques), this lovely woman corrected me and said she would "pass all the good on to the young."
I found her answer not only surprising but very profound. I feel this woman’s deepest wishes are to pass on hope for a better future to the next generation.
This was the answer from a woman who, only minutes earlier, was agitated, angry, and wanted to leave. This illustrates the importance of listening and giving individuals the opportunity to express themselves.
Providing Mrs. H. with a sense of agency, even in a small way, enabled her to articulate a deeply compassionate and forward-looking perspective.
Mrs. H. had calmed down and was in a much more relaxed state.
I’m going to try to use this question more often to allow people to express what they would do if they had full agency over their lives.
"If you were Queen (or King) for an hour, what would you do?"
Restoring Agency to Those Living with Dementia
The concept of agency—allowing individuals to act independently and make their own choices—is important, especially for those living with dementia. As we've seen, even small opportunities for decision-making can have an important impact on a person's sense of dignity and well-being.
I always try to think how I would feel if I was in the same situation and not able to make my own choices. Here are some simple ways to help restore agency.
👉🏼 Offer Choices: Whether it's deciding what to eat, what to wear, where to sit, or what activity to engage in, allow individuals to be in control of their lives, just like all of us want to be able to make choices about what we do.
👉🏼Listen Actively: Take the time to listen to an individual’s concerns, wishes, and preferences and validate their feelings. All of us want to be heard and understood.
👉🏼 Involve People in Decisions: Always include older adults in discussions about their care and daily routines. Depending on what a person is capable of doing, this can be as simple as asking their opinion on small matters or involving them in planning activities and schedules.
👉🏼 Encourage Independence: Allow older adults to perform all tasks they are still capable of doing, even if it takes a bit longer. This can help maintain a person’s skills, improve their confidence, and allow a person to remain independent longer.
👉🏼 Create a Supportive Environment: Help make an older adult’s surroundings as accommodating as possible, with clear signage, familiar objects, and a routine to allow a person to remain independent.
👉🏼 Respect Preferences: Honor an individual's likes and dislikes and try to incorporate their preferences into their daily life as much as possible.
By implementing these simple strategies, we can help those living with dementia not only retain their sense of agency but also their independence.
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