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The Person Comes First - Part 3

Updated: Mar 12, 2023

Blog Post by Oran Aviv


This is the third in a series of blog posts that summarizes this year’s Validation World Congress on the subject: The Person Comes First. Today I will be summarizing Dr. Al Power’s presentation of his Well-Being Approach to Dementia.


You can read our previous blog posts The Person Comes First – part 1 about 90 year old Naomi Feil, the founder of the Validation Method and Myra Garcia who is living with young-onset Alzheimer's and The Person Comes First – Part 2 about Dr. Cameron Camp's Montessori Method for people living with dementia.


Allen Power, MD is a board-certified internist and geriatrician, and newly named Schlegel Chair in Aging and Dementia Innovation at the Schlegel—U. Waterloo Research Institute for Aging in Ontario, Canada.

Dr. Al Power has challenged traditional perspectives on dementia through his well-being approach, which is based on 3 main pillars:

✅Redefine Dementia,

✅Well-being as Primary Outcome,

✅Transformation of Care


Redefining Dementia According to Dr. Power, dementia has become overly medicalized, with a heavy focus on deficits and negative stereotypes that stigmatize individuals. The current definition of dementia is rooted in the complexities of brain chemistry, neurology, and pathology, leading many to turn to neurologists and psychiatrists for help.


However, Dr. Power argues that we may be approaching the issue from the wrong angle. For instance, when Mrs. Jones has trouble taking a shower, we tend to call a doctor. However, medical training rarely includes teaching on how to assist with such everyday tasks.


In response, Dr. Power redefined dementia and introduced his new definition:


“Dementia is a shift in the way people experience the world around them”

This new definition emphasizes the importance of understanding the individual's experience rather than focusing on the stages of the disease or brain pathologies. This approach is grounded in basic humanity and deep knowledge of the individual, allowing us to better meet their needs and provide appropriate care.


Well-Being First

Dr. Power suggests that instead of focusing on "managing behaviors," we should prioritize improving people's lives by making well-being the primary goal for care. He believes that the term "managing behavior" carries a negative connotation, expressing contempt or disapproval, and that people living with dementia do not need to be managed.


Dr. Power utilizes a well-being model based on "The Eden Alternative," which focuses on fulfilling basic human needs such as

  • Identity

  • Security

  • Meaning of life

  • Connectedness

  • Autonomy

  • Growth

  • Joy

While every person has these same needs, it can be much harder to maintain them when someone is living with dementia.


Dr. Power suggests visualizing each element of well-being as a cup and asking how full each of the seven cups is. He notes that all over the world it is rare to find someone living with dementia whose cups are more than 30 percent full.


Rather than trying to fix a problem, Dr. Power suggests working proactively to give individuals more autonomy, allowing them to maintain their sense of self and control over their lives. By prioritizing well-being and autonomy, we can improve the lives of those living with dementia and enhance their overall quality of life.


Dementia as a Disability

What if we viewed dementia as a disability rather than a fatal disease? Would it change the way we approach and relate to individuals living with dementia? Dr. Power quoted Dr. Richard Taylor, who lived with dementia and said,


"I'm not dying of a fatal disease;

I'm living with a chronic disability."


Dr. Power invites us to consider someone in a wheelchair who cannot go upstairs because there is no ramp. We would not tell this person to simply go up the steps and then when he falls and gets angry medicate them for this resulting behavior. However, when it comes to people with changing brains, we often expect them to view the world as we do and when they become upset when they can't, we tend to medicate them for their behavior.


What we need is to accommodate individuals living with dementia and provide them with cognitive ramps. We can use the disability model to help people living with dementia succeed in our world.


The disability model is about accommodating the changing experience of the person and creating those accommodations that help the person continue to succeed in the environment they are in.


By embracing the disability model, we can help individuals living with dementia maintain their dignity and autonomy and provide them with the support they need to navigate the world around them.



Transformation of Care

So how can we proactively increase well-being? Dr. Powers suggests we start by:

✅Learning about the person.

✅Understanding their challenges

✅Looking at their experience through the lens of the seven domains of well-being.

By assessing the "cup" od each element of well-being and asking if it is full, we can identify areas where we need to provide additional support to increase the person's autonomy and sense of fulfillment.


If a person's needs are not being met, it's no surprise that they may become upset. However, resorting to medication is not the answer. Instead, we need to look beyond the symptoms and focus on addressing the underlying needs that are not being met.


Dr. Powers believes that we need to stop pathologizing people with cognitive changes and look beyond their words and actions to understand their experience. He suggests that we get rid of the term "behavioral and psychological symptoms of dementia" (BPSD) and demonstrates the problematic nature of labeling people with BPSD through this clip.




By moving away from a pathologizing approach, we can create a more supportive and fulfilling environment for individuals living with dementia.



The Expert is the Person Living with Dementia

During Dr. Power's presentation, I gained a valuable insight: the experts when it comes to dementia are the people living with it and those closest to them. Despite our training and expertise in the field, it's essential to recognize that we don't have all the answers. Instead, we should empower those living with dementia and their carers to find solutions by changing their mindset.


Dr. Power's approach involves reframing the problem-solving process. Instead of trying to fix the problems for them, he helps people living with dementia and their carers develop the right thought processes to come up with their solutions. By doing so, we can help the real experts find effective solutions and improve their overall well-being.



Reducing Antipsychotics

Both Dr. Cameron Camp and Dr. Al Powel discussed the overuse of antipsychotics prescribed to people living with dementia and how we can reduce their use.

Dr. Cameron asked us: Imagine having a drug that could alleviate symptoms of depression without curing it, but with no toxic build and not toxic side effects. The catch is that its effects dissipate quickly in the blood stream, lasting only an hour. How often would you give the pill?


A non-pharmacologic “treatment” that works similarly to this imaginary pill is engagement. By giving a person purpose or a reason to wake up each morning, engagement can effectively address behaviors associated with dementia. Toxic pills or engagement? The answer seems obvious.


Dr Power added that sadly, self-determination is often taken away from those living with dementia. This happens quickly and without a second thought, as people assume that those with dementia cannot make decisions for themselves. While temporary solutions can provide short-term relief, they do not address the root causes of behavior. Instead, finding an activity that is engaging, varied, and meaningful can help restore agency to people with dementia.


Dr. Camp added that in order to design an activity that is really engaging, it's important to get to know the person and understand their interests, just as you would for yourself. It’s also important to not continue repeating the same activity just because it was engaging. People living with dementia will get bored just like all of us.


People with dementia want to give back to the community just as much as those without dementia. They help lead hunger drives and create toiletry bags and salads for the homeless.


Dr. Camp put it very simply:

A person with dementia wants what a person without dementia wants!

At their core, people with dementia want what anyone wants: ✅A place to call home ✅To know their neighbors and be known by them ✅To feel safe

✅To be part of a community ✅To have community goals they can contribute to ✅To stay connected with the outside world


When a person with dementia says they want to go home while standing at the door of a beautiful building, they're communicating something very clearly: this place doesn't feel like home. The root cause of the behavior is the lack of autonomy, choice, and control over their lives and purpose. Redirecting their attention is not the solution. Instead, we must change the culture and environment to make it a truly meaningful place to live - a home that's part of a community.


It's time to get rid of the idea that behavioral problems are symptoms of dementia. As Al Powers says,

"It's not about dementia, it's about culture."


By embracing engagement and restoring agency to people with dementia, we can reduce the use of antipsychotics and improve their quality of life.

---

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