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Younger-Onset AD or Other Dementia
Blog - Living Well With Dementia: What It Means And What It Doesn't Mean
Living Well with
Dementia: What It Means, and What It Doesn’t Mean
"I have had some interesting experiences in my years
speaking about Alzheimer’s and other forms of cognitive change. One thing that
has surprised me is that the articles written about me—or those that quote
me—can generate a very strong and negative response from some readers. Some
become quite angry or even offended when I suggest that the tragedy dialogue
around dementia can be harmful.
I think I can understand this. I think many people feel that
when I say it is possible to live well with dementia, I am somehow dismissing
the very real struggles and challenges they face in caring for a loved one. Or
that I am saying that if their loved one suffered at all, it’s because they did
not do a good enough job of caring. Most of these people have never actually
heard me speak in detail or read my books, and it’s understandable that reading
“sound bites” could lead to these feelings.
My colleagues who joined me in criticizing the tone of the
recent PBS documentary, Every Minute Counts have no doubt experienced a similar
reaction. So for my part, I’d like to expand a bit on my thoughts, in an
attempt to set the record straight about my feelings, my objections, and my
appreciation of the nuances of caring for another person. And since sound bites
are so easily misconstrued, this will need to be rather wordy."
"First of all, I believe that the two most complex
things in the known universe are the human brain and human relationships. When
a person faces a diagnosis of dementia, she and her loved ones are thrown into
these two most complex worlds like never before. It is very hard to navigate,
and it can create a great deal of stress, anger, and sorrow. I would never try
to deny that people experience this with Alzheimer’s every day. Nor do I think
that we are fundamentally uncaring or incapable as carers if our loved ones
What I am trying to say is that our predominant view of
dementia puts those caring people in a system that is stacked against them—a
non-level playing field, if you will. My primary message is: This is not about
bad people, but rather inadequate systems—systems of thought and systems of
care—that prevent us from achieving all that we had hoped.
While it is impossible to put all of these aspects into a
brief post, I will list four examples of how the predominant view of dementia
actually makes our jobs as care partners much harder and—as I said in a recent
comment—can actually lead to more suffering for those living with the
The language we use and the ways in which we portray
people—”The Long Goodbye,” “fading away,” or as the program stated, an “empty
shell” serve to dehumanize the person in the eyes of society. Researcher Susan
Behuniak describes the media view as ranging from “piteous to repulsive.” She
mentioned the common view of the person as being just like a “zombie,” and
added that this dehumanizing view of people not only robs them of death with
dignity but also a life with dignity. This also leads to social isolation,
which further increases your burden as a care partner.
Another consequence of this view is that the person is
immediately seen as incapable and becomes disempowered from Day 1. There are
highly touted education programs that tell people, “Your loved one will slowly
disappear” and “They are incapable and you must take over everything.” Even the
name “caregiver” suggests that it’s a one-way street—you must do it all, and
they can offer nothing in return. So the carer is told to take on an inordinate
burden from the very start.
The person with dementia, who is already struggling to
navigate her own grief with the diagnosis, now lives in a world where she too
often has no opportunity to give an opinion or make any decisions about her
life. And it happens as soon as the label is applied, no matter how well
preserved one’s capabilities may be. People with dementia tell countless
stories of this happening to them in everyday life, from family members and
professionals alike. This is a major, reversible cause of suffering.
The wrong education
As implied above, much of what we are taught about caring
for people living with dementia does not give us the insights to find durable
solutions and can actually make things worse. Let me share a story that
Yesterday, I had the opportunity to help a family member
change a flat tire. I know from years of experience that the lug nuts on the
flat tire are very sticky and hard to loosen; therefore, you must loosen them
before you jack up the car, or else the tire will just spin around when you
pull on the wrench, and you will get nowhere.
Most people know that; but suppose you had been taught in
your driving education that you must begin by jacking up the car. You would be
constantly frustrated and angry by a technique that wasn’t working, and you
would conclude that changing tires is always a miserable experience, doomed to
failure. And if someone came along and said it didn’t have to be miserable, you
might think they were delusional.You might figure out the better approach
through trial and error; but if the authorities constantly told you that, no,
you must always jack up the car first, it would leave you lost and failing
repeatedly. This is obviously an oversimplification, but is used to illustrate
the point that much of our available education is inadequate, or simply wrong.
Not your fault when things don’t get better; you were given a broken playbook.
One of my greatest epiphanies—and sources of
embarrassment—is the knowledge that can be gained by listening to the wisdom of
people living with dementia. This began with meeting people like the late Dr.
Richard Taylor, who traveled and spoke quite eloquently; but those insights
also helped me to find important clues to understanding those who could not
speak well, or at all. And it’s embarrassing to think of all my years as a
doctor when I discounted people as being confused or even delusional, because I
did not understand how they were expressing themselves.
This is why I talk about care partners. Even if people are
at a stage where they can do very little for themselves, they almost always can
express choice through their words or actions. When these are dismissed as
“behavior problems,” we miss these clues and also deprive the person of one of
the most basic human rights: the right to be heard and understood.
So part of care partnering is understanding that people with
all levels of ability can teach us volumes about how to care for and support
them. We must become the students in order to fully succeed.
This lack of the right education is complicated by our…
Our intense focus on brain disease leads us to ignore the
experience of the person who lives with the diagnosis. Everything becomes a
symptom of disease. When we don’t understand how to support the person whose
worldview is shifting, and our professionals tell us that the difficulty they
experience is a “behavior problem” and a “symptom of dementia,” we use
dangerous and sedating medications, instead of learning how we can shift to accommodate
their worldview (just as we have learned to build ramps for people in
wheelchairs, instead of forcing them to walk up steps as we do).My work has
shown that the majority of episodes of distress that we see are not the direct
result of the brain damage (which may enable their distress, but is not the
root cause). Usually, the root cause is a loss of various aspects of well-being
(such as a sense of autonomy, meaning, or security). There has never been an
educational course that teaches us how to recognize and respond to threats to
well-being—only how to “manage one’s behavior,” which means either to medicate
the person, and/or respond with an array of “interventions” that distract, but
do not fulfill the underlying needs, so the distress occurs over and over.
When I teach a proactive well-being approach, care partners
often find solutions to distress that they had never found before—I have heard
of seemingly miraculous transformations in people with whom they had struggled
for months, even years. These care partners aren’t bad or ignorant people—they
have just been taught the wrong approaches—in essence they were put on the
non-level playing field.
Family members (and professionals who have cared for loved
ones) often say to me, “I so wish I had known this 5 years ago,” or “…back when
my Mom was alive.” We have all followed this path to greater knowledge, and we
have all made many mistakes along the way, none more than I. I began my first
book, Dementia Beyond Drugs, with a story of one of my greatest failures. And I
finished the story with Maya Angelou’s quote, “You did then what you knew how
to do; and when you knew better, you did better.”
This is the last aspect I will discuss here, but it’s a huge
one. There is a desperate need for more than just better education. Family
members and professionals alike need a much better infrastructure for care, as
the documentary correctly pointed out: better home care services, respite,
enabling technology, community redesign, transportation, better long-term care
options, and community awareness and capacity immediately come to mind. Another
important need that was not fully addressed is the need to provide
“habilitative” therapy and purposeful engagement, in order to forestall loss of
ability and faster decline.
Unfortunately, as the documentary echoed, our solution
always comes down to, “Give us more money to find a cure.” This is problematic
for two reasons. First, dementia is intricately tied to our long lives and to
the aging process. Of course, younger people are diagnosed as well, but most
people do not have a strong genetic link and many of the younger people likely
represent the end of a bell curve or an earlier diagnosis, rather than a
distinct illness. As a geriatrician, I know that we can’t cure aging and
mortality, and it follows that there will never come a time when many aging
people do not experience changes in their cognitive abilities. To think we can
eradicate Alzheimer’s like smallpox is as much a fantasy as curing mortality.
We can and should do research to find better treatments to delay the onset or
progression of the illness; but the inordinate focus on The Cure creates false
hope and produces a subtle, but very real societal intolerance for those who
can’t be cured.
The second result of focusing excessively on The Cure is
that all of the other needs I outlined above are given much less attention and
far fewer resources than the drug companies. So we, as care partners, are too
often left to fend for ourselves without those other areas being adequately
addressed. Most countries have rebalanced their priorities to elevate these
needs alongside drug research—the US has not. So here we are again on
the non-level playing field, with our day-to-day needs being unfulfilled while
the promise of The Cure is touted over and over.
So to summarize this lengthy post: Yes, I feel your pain; I
see your struggles. They are very real. My message is that you have been let
down by our system and our model of viewing dementia, and that it can be much
better if we are open to challenging the status quo and working proactively to
improve the well-being of those we support, and our own as well.
This is not just theory. Many colleagues and I can share
countless stories of people who have made a better life for themselves and
their loved ones by rejecting a narrative of pure loss and tragedy and
discovering a new path. It won’t be easy. It won’t be without sorrow and grief.
But you will find the gifts and solutions hidden among the challenges, and each
person’s life with dementia will take on a level of meaning and value that our
current view does not permit.
I wish you all the best of luck in the important work you
This article first appeared on changingaging.org.
Written by Dr. Al Power
Blogs can serve a purpose. Several of our own members have had their own blogs: Lisa428, Younghope 1, Paul Hornback, among others whom I can't recall at this time. I owe them a debt in sharing their experiences.
I will try to read the blog again later - too much info for me to hold at once.
what we can say to ourselves is what living well with dementia would mean for us.
For me it involves color, a dog, massage, and nature.
almost all current medical help for people with dementia revolves around making cgvrs more comfortable, drug us to help them - make us more compliant.
anyway I was not able to finish the blog and will read it later.
To get past the shock state of being diagnosed it's important to consider what really matters to each of us, and to understand we are now living with a different brain. That is not same as "losing our identity".
I am daughter of a person with dementia. I feel this blog is excellent and oh so affirming of the concerns of persons like my mom. As in, "talk with her! She can understand!" within a medical appointment. There is a problem with this society and it is the intense and destructive focus on "hyper-cognition." Person must be talking, talking, processing, processing, at a hyper level to be considered *intelligent.* I would argue that intelligence is so much more.
I witnessed this at my mom's appointment with a medical personnel who was my son's age; read twenties. He did not talk with my mom until I instructed him that my mom could hear him perfectly and respond perfectly if only he would bother to speak into her left ear -- as I had instructed in the paperwork.
She became involved in her own care and concerns when she understood it was her -- She -- was the person being discussed. Her fate, her body, her self, was being discussed.
Part of my job as a care partner is to volley this concern of the medical person towards -- the person herself where the concern belongs and allow her the time and space to respond to these concerns that have to do with -- her.
For this reason I do believe persons with dementia do need advocates. The reason being that this society is loaded against persons who have any difficulty with processing, understanding, navigating.
Thank you for posting this blog. It was very instructive. I am a care Partner.
Sun posted this less than a week ago.
This is why it is hard for me to believe she is gone. She enjoyed helping people, was still doing it.
Rest in Peace
I am in shock. I am so saddened to learn of Sun's death. How brave she was. How cruel this disease is. How horrible that she needed
to do this. That there was no other way to hang on. Selfishly, I wish
she had. I have been here for several months, and she offered so much compassion and support, helping me and catching me as I sunk into the depths of despair. To hear/see silence and not see her active involvement, which was
so much a part of this forum is deafening. How sad. It is as bad as it gets. Was this done now
because she felt that if she waited she would not be able to? I only knew Sun for a short time but let me be loud and clear- this woman was so authentic, so full of life!!! The empty shell that is spoken of typifying the person with Alzheimer's, is so far from anything that Sun was. What an extraordinary and valiant fight. My heart goes out to her daughter and family.