A bit more about “Dementia Beyond Drugs”

Posted on December 20, 2011 by Allen

I’ve been a bit remiss in my blogging of late. I guess more timeliness will have to be my New Year’s resolution.

Meanwhile, I am cross-posting an interview I had recently with Stephen Woodfin. Stephen is an attorney, a novelist and a blogger with an interest in issues of aging as well as dementia. Here are the questions he asked me about my book, and my replies:

Q: Dr. Power, in your book Dementia Beyond Drugs, you describe your approach
to the treatment of persons with dementia as “experiential.” Tell us how an
experiential model differs from the dominant medical model.
A: The traditional biomedical approach is a deficit-based view that focuses on
neuropathology and tends to blame brain disease for distress. The experiential
approach holds that the best way to care for a person living with dementia is to
understand them as a person and their individual experience; so I use the very
holistic definition that “Dementia is a shift in the way a person experiences
the world around her/him.” This idea of changing perspective is something to
which we all can relate, and this commonality helps us build a bridge to better
understand the person’s needs.
This is also an approach that does not require a detailed knowledge of the
person’s exact brain pathology. While such distinctions are useful in a research
environment, I find that they lead to generalizations that stigmatize and
position people in real-life care. I wanted an approach that would work for
almost everyone, and for which the person providing care didn’t need specialized
knowledge to understand how best to support the person in their care.

Q: You point out that a person with dementia who receives treatment at home can
be just as “institutionalized” as a person in a nursing home. What do you mean?
A: The institution is more than a building. It is a rigid environment that
disempowers individuals through hierarchical authority and priorities that are
not always in the individual’s best interest. When a person at home has lost all
input into daily decisions, becomes isolated or objectified, and/or when her
care suffers because the “caregiver” is burned out from lack of resources and
support (which often leads to isolation and overmedication), then she can easily
become institutionalized in her own home. I saw a dramatic example of this a
few weeks ago, which I posted on my blog. (For brevity’s sake, here’s a link to
the post: http://changingaging.org/alpower/2011/11/23/the-power-of-choice/ )
(Of course, you need look no farther than The Sickle’s Compass to see another
good example of this! [Al was kind enough to mention my novel about Alzheimer's,
which he recently read. Thanks for the mention, Al,-SW])

Q: You are a guitarist-singer-songwriter. How do you utilize music in your
work with persons with dementia?
A: People with and without dementia connect through music on a variety of
levels. Sharing melody, rhythm, emotions and stories of the human experience can
have incredible powers of connection and even healing. In the case of dementia,
it is quite beneficial in the ways it can trigger memory, release stress, or act
as a conduit for people who have lost the ability to easily relate through
normal conversation. I love to share music with people whenever I travel, and at
St. John’s Home in Rochester, where I work. I usually do a concert or two each
year, as well as impromptu singalongs and annual Christmas caroling.

Q: You call for a radical re-orientation in dementia care away from the medical
model toward one that focuses on partnership. Do you see evidence that this
partnering approach is gaining traction, and if so, where and in what sorts of
settings?
A: I think that the dominant paradigm has recently been coming under more
intense scrutiny. As I write this, Congress and the Feds are holding a hearing
on the overuse of antipsychotic medications in dementia.
As I have traveled, I have encountered numerous people and organizations who
relate their own experiences and successes with a partnership approach. I was in
Waterloo, Ontario, Canada, yesterday, where the Murray Alzheimer’s Research and
Education Programme (MAREP) is a world leader in teaching us how to form
“authentic partnerships” with people living with dementia. For 5 years, they
have sponsored “A Changing Melody”–a conference planned and presented by people
living with dementia, for their peers, and for professional and family care
partners. I attended the conference last March and was blown away!
MAREP is creating a partnership toolkit to teach families to partner with their
loved ones, and has also published a series of “By Us For Us” guidebooks of peer
advice for living with dementia.
Many other organizations are reporting success in reducing or eliminating
psychotropic medications and improving not only well-being, but cognitive
function as well.

Q: You mention that we may have much to learn from the way other cultures treat
people as they age and encounter dementia. Are there examples that come to
mind?
A: One great advantage of traditional societies is the way they value elders
and keep them integrated into their social network. These views have been
challenged by developmental forces that are pulling family members out of the
traditional home care role in traditional societies, but the values can be
preserved in spite of modernization, and can be adapted to
industrialized society. Developing guidelines for socially integrated,
sustainable communities is the focus of my Bellagio Residency next spring with
my friend, Dr. Emi Kiyota, a world-renowned environmental gerontologist.
Emi has said, “I have seen elders in Africa living in grass huts with children
at their feet who are happier than people in assisted living with chandeliers
over their heads.”

Q: If a person with Alzheimer’s is already on anti-psychotic or similar
medications, what do you suggest as a means to have her course of treatment
re-evaluated to determine if she can have a better quality of life without them?
A: We need to go beyond the usual audits of comfort, toilet needs, etc. to look
at deeper unmet needs. I like to look at indices of well-being. There are many
ways to define this, but I like the following seven domains: identity, autonomy,
security, connectedness, meaning, growth and joy. These become challenged to a varying extent in dementia, both due to brain disability, and due to excess
disability caused by our approach to care. By replenishing these domains, we can
often help a person re-engage and find more contentment.
Doing this requires that we step outside our own perspectives and try to truly
understand the unique perspective of the person with dementia, in order to
understand what they need to succeed. Because we learned to understand the needs
of people in wheelchairs, we created ramps and other forms of disability access
to buildings. Now we need to build “cognitive ramps” for people with dementia to
succeed.

Q: Obviously, many of the decisions care partners have to make come down to
funding. What sources of funding are available for persons who seek the
experiential model instead of the medical one?
A: The biggest investment of this approach is to undergo a change in our own
attitudes and in the way we interact with people who live with dementia. One of
the most underappreciated aspects is the extent to which the interpersonal
environment can affect the well-being of people with dementia. We are
resource-challenged in all care environments, but without the proper mindset,
all the money and staffing in the world will not create well-being.

Q: If you could recommend three books for care partners to read (excluding
your own), what would they be?
A: There are so many good ones, covering many different aspects and approaches,
but I would start with three books that should be basic reading. First, two books
by the true experts–those who live with dementia: “Alzheimer’s from the Inside
Out”, by Dr. Richard Taylor, and “Dancing with Dementia” by Christine Bryden. For
more insights into the interpersonal dynamic, try “Inside Alzheimer’s” by Nancy
Pearce.

Stephen’s blogs and book reviews can be seen, among other places, at www.venturegalleries.com, and his review of  my book is at http://venturegalleries.com/blog/where-are-mommas-pills-a-review-of-dementia-beyond-drugs-by-g-allen-power-m-d.

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The Power of Choice

Posted on November 23, 2011 by Allen

I was speaking in Ohio earlier this month and had an experience that reinforced an important lesson for me. I was giving a community talk on dementia and a TV reporter came to interview me before the talk. We put on the microphone and launched into a 10-minute conversation on camera. She asked a lot of good questions, and then as my message became clearer to her, she threw me a curveball.

She said, “A man disappeared from his house in our community a couple of days ago and they haven’t found him yet. Do you have any insights about problems like this?”

In the split second before I opened my mouth, three thoughts flashed into my head: (1) You don’t know the details, (2) Don’t blame anyone for not watching him, and (3) But you can’t advocate locking everyone up, either.

I just began to speak from the heart of my approach and my mind went to a very different place. I said, “Often, when we acquire the label of ‘dementia’, we are seen as incapable of choice, and so this is taken away from us very quickly. I think that there are times, whether it be in a nursing home or one’s own home, when a person feels so disempowered that they have a need to exit and try to find a place where they can exert some choice and control once again. I think that if we can begin to partner with people in their care right from the start, often there will be less likelihood of such a catastrophic reponse.”

I went on to give my talk, but in the back of my mind was the question, “If that comment is broadcast, especially out of context of the other questions, how many ways can it blow up in my face??”

The next day I spoke to professional care partners. One of the organizers mentioned to me that he heard on the news that the gentleman had been located, and that he was safe. My host said, “It turns out that the guy took off because they were about to hold a court hearing to assign guardianship to a family member.”

Powerful stuff, choice.

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Involving People Living with Dementia

Posted on October 27, 2011 by Allen

Thanks to Norm McNamara (a person living with dementia and UK Alzheimer’s Society volunteer), for sharing a new document that he and several other people living with dementia and their care partners have developed, in conjunction with the South West Dementia Partnership. It is entitled Involving People Living with Dementia: Making Involvement Count.

Words such as ”involving” and “partnership” are important here, because they challenge us to go beyond the usual way in which we “care for” a person living with dementia.

Although we strive to be “person-centered”, this too often translates into a paternalistic and objectifying approach to life and care. The problem boils down to the tricky nature of empowerment.

A tendency with dementia is to assume that when a person has difficulty making some decisions, then all decisions must be taken away. But the vast majority of people, through all stages of dementia, can participate in decision-making at some level, given adequate communication and facilitation by care partners. Many people living with dementia seem less capable than they are, because we do not take the time to learn and apply the best interpersonal approaches, in order to optimize communication and understanding.

When it comes to creating true empowerment for people living with dementia, people often go to one extreme or the other–either they say, “It is too risky for him to make choices”, or else, “I have tried to have him choose, but he just doesn’t know what to do.” The first extreme cuts a person out due to preconceived biases about his ability to participate; the second fails to provide the proper parameters to enable a framework for successful decision-making.

The South West document goes a long way toward helping create meaningful involvement. It begins with the credo that “People with dementia should be enabled to:
- play a full part in decisions about everyday matters and major decisions affecting their lives;
- participate in the operation and management of services, e.g. by involvement in recruitment
- influence improvements in service operation, e.g. by prompting changes in the way in which referrals are made to specialist services;
- influence future service provision, e.g. by suggesting alternatives to traditional day care;
- have a voice in the policy-making process, e.g. by campaigning for new life-enhancing resources; and
- have a voice in the wider community, e.g. by changing attitudes to dementia through involvement in community groups.”

The brochure contains a variety of guidelines for such involvement, including such things as how to invite people to meetings, ideal room setups, font sizes on printed matter, and facilitator-to-participant ratios. There are sections on communication, inclusion of special populations (such as those living with dementia and learning disabilities), and techniques for increasing participation, both in getting to the event and within the event itself. There is even a section on how to involve people in the process of interviewing new staff for your organization.

This is another great step in helping to create authentic partnerships with people who live with dementia. Click here to download the PDF Involving People Living With Dementia

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Why People Move to Nursing Homes

Posted on October 25, 2011 by Allen

As I travel and speak, I often find myself challenging a notion that seems deeply rooted in long-term care–an idea that, in its essence, is a barrier to deep culture change. That notion is that people move to nursing homes because of complex medical or nursing care needs.

My contention is that for nearly every person who lives in your nursing home, I can find an identical person still living at home. The reason people move to nursing homes is primarily socioeconomic, not medical. If you have the resources–family or financial–to receive care in your home or in more independent housing, you will virtually always choose that option and stay where you are.

So here’s the rub with culture change: We often cite the complexity of people’s care needs as an excuse to medicalize their lives in nursing homes. This bleeds over into taking over day-to-day decisions for the elders because of their “needs”. But the fact that many other elders with similar needs who receive home care can remain in charge of their lives puts the lie to this idea.

It stands to reason that if people with complex care needs who have financial and/or family resources can live a balanced life in their homes, then nursing homes (who satisfy the shortfall in financial and family support) should be entirely able to provide the same kind of life for their elders.

The only real difference is that the nursing home is a congregate setting for many people’s care. But that is not an excuse to medicalize life for our elders. If anything, the pooling of clinical resources in one place (as opposed to traveling home health workers) should make it easier to provide treatment that does not interfere with life. It is only our chosen system for providing that treatment that turns things upside down.

This is not about diminishing the role of doctors and nurses; it’s about having the doctors and nurses do what they are trained to do, and elevating the role of the elders to drive the rest of their lives, restoring the balance that has been lost.

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New book – “Turn of Mind”

Posted on October 14, 2011 by Allen

On yesterday’s cross-country flight, I read the new novel, Turn of Mind, by author and Stanford creative writing professor Alice LaPlante (©2011, Atlantic Monthly Press). It tells the story of Dr. Jennifer White, a renowned hand surgeon now living with Alzheimer’s disease. Her best friend is murdered and she becomes a “person of interest” in the case, but has trouble remembering what, or if, she knows about the crime. As she struggles to remember, she also becomes entwined in thorny family issues of the past and present, and faces the loss of home and independence.

As a novel, it is very well-constructed. I could split hairs about some of her cognitive shifts being a bit exaggerated, but I think artistic license is allowed here. Nevertheless, the book left me wanting, which should not surprise my readers.

You see, the book revolved strongly around the concept of Alzheimer’s as the “living death”, the rotting of the mind and loss of personhood, which I so strongly dislike. The fact that characters in the book treat her like a non-person is not objectionable to me, because it is instructive when characters do so. But there is no one in the book who has a whole person view of the protagonist, not one safe harbor. Not even Dr. White herself, nor it seems, the author.

The only semblance of personhood in dementia in the story is the fact that it is told completely through the eyes, ears and mind of Dr. White, which is nicely crafted and maybe is meant to be a statement in itself. But there is no hope here. Even the critical decision Dr. White makes in the novel’s climax makes her seem more like a victim than a person who asserts her will.

In Still Alice, by Lisa Genova, there is also a declinist tone, but the book holds a crucial speech by the protagonist that helps us to look at her in a new light. And even though her disability progesses, there is a ray of hope offered in the closing pages. Not here.

There are some wonderful descriptors in the book. Here is a favorite of mine, from the nursing home where Dr. White is sent:

“The only thing that helps is the walking. What the people here call wandering. A labyrinth for the mentally deficient…

“I remember the Chartres labyrinth, the children fascinated with it, following its mesmerizing lines to the center. Where pilgrims hoped to get closer to God. Where repentant sinners who suffered the stony path on their knees finally arrived, bloodied and weary, their penance fulfilled.

“How I would love to experience once again the sense of freedom that follows punishment, that release that children feel once they have confessed and paid for their trivial crimes. But I–I have no choice but to keep wandering.”

Read it. Let me know what you think.

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Two New Green House Stories

Posted on October 11, 2011 by Allen

Everyone who is building Green Houses® is delighted by the stories their predecessors tell about people rediscovering old capabilities in the new living environment. But we all hope to see it for ourselves with our own elders.

At St. John’s new Green Houses, we haven’t even opened yet, but we have already seen our first such example of the power of this model.

Last week, as the staff were undergoing in-house culinary training, they invited one or two elders and their families each day to come by and have lunch. On Wednesday, I was meeting with some design expert friends, and our Guide, Rebecca Priest, invited us to come out and join Don and his family for lunch.

Don, formerly of MIT, now lives with moderately advanced dementia. At the nursing home, he needs the fairly heavy assistance of two staff members to move from one chair to another. As such, he came out to the Green House in a wheelchair van and after a tour, he was transferred with a fair amount of effort into a chair at the dining room table.

All of us joined Don and his family for the better part of an hour, enjoying soup, sandwiches and good company.

When the time came to leave, Don’s wheelchair was brought over and he quickly stood, and with minimal help from one staff member, transferred back to his wheelchair. Rebecca said, “Hey Don, what’s the deal? It takes two people to help you transfer at the home!”

Don slowly replied, “Well…I guess I’m supposed to be sick over there.”

A humorous postlude to the story is that later that day, the mattresses arrived. We have broken another barrier by buying a full-sized bed for every elder in the Green Houses. We couldn’t find a single vendor in the country that would make us one, so Rebecca just went to the local mattress store and purchased 10 Tempurpedic-style residential beds for each house.

The doorbell rang, and there was a truck with two puzzled looking men at the door. One said, “We’re supposed to deliver a bunch of mattresses to some nursing home around here.”

He was assured that he was in the right place. As he walked into the living room, his jaw dropped, and he said, “This doesn’t look like any nursing home I’ve ever seen before!”

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St. John’s Green House Project Brings Elders Back To Their Communities

Posted on October 5, 2011 by Kavan Peterson, Editor, ChangingAging.org

From the ChangingAging Blogstream

By Kavan Peterson, for The Green House Project Blog

On the heels of opening the 100th Green House Project home in the nation, we’re getting ready to celebrate another landmark — St. John’s Home Green House Project in New York will be the first in the nation to bring elders back to their hometowns to live in homes throughout the greater Rochester community.

St. John’s will dedicate its first two Green House Project homes Oct. 6 in the community of Penfield, N.Y. Elders from Penfield currently living in St. John’s Home will have the opportunity to move back to their hometown to be near family, friends, their church congregation and take advantage of other community resources.

The Penfield Green House homes are located about 10 miles from St. John’s Home main campus in Rochester. They will be the first decentralized Green House homes to open. Other notable community-based Green House Projects are in development in Sheridan, Wyo. , and Baltimore (see also Wyoming Launches First Community-Driven Green House Project Eldercare Homes and Get Excited For Maryland’s First Green House Project).

“Anyone who needs nursing home services will have the opportunity to live in a home environment,” Green House Project Guide Rebecca Priest told Rochester’s Channel 13 ABC News. “Whether you have dementia or any type of need as you age you should have the opportunity to stay in your community and this is the first time in the U.S. we’re making it possible to do so.”

Channel 13 aired a three-part series on St. John’s Green House homes this week. Click here to learn more about St. John’s Green House homes.



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We Are Not the Alzheimer’s Generation!

Posted on September 22, 2011 by Allen

As many of you know, the national Alzheimer’s Association leadership has labeled the Baby Boomers “Generation Alzheimer’s”. As one who is planted firmly in the center of that cohort, it’s time I responded to that characterization.

The reason we are felt to be the Alzheimer’s Generation is because when the Baby Boomers reach their 70s and 80s, there will be more people living with Alzheimer’s and other dementias than our country has ever seen.

This is true, and there is a simple reason why: Because there will be more 70- and 80-year olds than the country has ever seen!

It’s a matter of numbers – there are over 70 million of us. So have you figured out that as of that same date, there will also be more  70- and 80-year olds with healthy brains than the country has ever seen? More 70- and 80-year old CEOs, performers, writers and marathon runners? So why aren’t people calling us the “Healthy Brain Generation”??

Those same aging demographics will likely make us the Heart Attack Generation, the Cancer Generation, the Stroke Generation and even the Polymyalgia Rheumatica Generation as well (though probably not the Diabetes Generation, as the current childhood obesity epidemic looks to outpace us there).

I do not deny that the number of people living with dementia is rapidly growing. But as I recently heard a politician remark: “Statistics are like lampposts–many people use them more for support than for illumination.” It is time to stop scaring people and start illuminating them.

Besides being alarmist, there are two other problems with this label. The first is that it is profoundly ageist. Basically, this is one more example of an emerging group of older Americans being demonized as an approaching plague and a burden on our society.

In my own journey to better understand the spectrum of forgetfulness and cognitive disability, I have found that the only true dementia experts are those who have lived with the diagnosis. With all due respect to my former professors of neurology and psychiatry, I have learned more from Richard Taylor, Christine Bryden and the hundreds of people I have cared for over the years than from all of my scholarly training. What I have learned is that these true experts have much to teach us about the experience of dementia, which will in turn lead to remarkable new ways to provide optimal care and support.

Based on this, one could also say that the aging Baby Boomers will bring an unprecedented amount of wisdom to us about the experience of dementia, thus exponentially increasing our own knowledge and skills (if we can get beyond the stigmatization and partner with them).

Kudos to the folks at the University of Waterloo, Ontario, Canada. Doctoral candidate Jennifer Carson has recently shared with me the work she is doing with Dr. Sherry Dupuis and others to move beyond our often-paternalistic view of “person-centered care” and promote authentic partnerships between people living with dementia and their care partners. They have designed a model and a toolkit to help people create such partnerships, in which the person living with dementia is actively involved in daily decisions and planning. Why aren’t efforts like these placed front-and-center at our dementia symposia, instead of one more talk on the structure of the tau protein?

My last issue with the “Alzheimer’s Generation” label is that a closer examination of that concept reveals a basic contradiction with the association’s stated goal of creating ” a world without Alzheimer’s”. Consider the implications of our generation being labeled as such and ask yourself: Why will the aging Boomers produce an unprecedented number of people living with dementia? Is it because we are uniquely susceptible to some mosquito-borne dementia virus? Because we don’t eat as well as other generations? Because we inhaled a bit too much Agent Orange or dropped a little LSD during our youth?

No, the reason is simply because our cohort will be entering old age–the time when dementia becomes most prevalent. This focus highlights the very fact that dementia is, by and large, a condition intimately related to aging of the body and brain. Therefore, it seems clear that it will be very difficult to create a world without dementia, unless we create a world without old people. Soylent Green, anyone?

Enough complaining. Here is how I would frame the coming dementia “boom”: The aging of our population and all the attendant conditions associated with advanced age are a reminder that our world is changing irrevocably. Just as with the arrival of the automobile or the internet, we need a paradigm shift. We are challenged to examine the way our society functions and to re-imagine what will be needed to ensure a healthy future society. In this case, we must radically change our view of dementia and the systems of care we have created, as our current approach does not work and will not sustain us in the years to come. We also need to re-integrate elders, with and without dementia, into the fabric of our society–not as passive recipients of care, but through the kind of authentic partnerships that pioneers like the Waterloo group have put forward.

This will require some hard work and there is no time to lose. Where to begin? Well, for a start, you could ask a couple of Baby Boomers for their thoughts. After all, the numbers clearly show that we will be the “Old People with New Ideas Generation”!

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A Poem to Consider

Posted on September 2, 2011 by Allen

I’m headed off on vacation for two weeks. Hope to post some photos from la belle France, but meanwhile, here is a remarkable poem to chew on while I’m away. It was written by David Hollies, who began to lose his memory at age 50. Thanks to Eileen, who found this in the book, life is a verb, by Patti Digh (c.2008, Patti Digh):

Lost and Found, by David Hollies

The first few times
Being lost was frightening
Stark, pregnant
With the drama of change
Then, I didn’t know
That everywhere is nowhere
Like the feeling when an ocean wave
Boils you in the sand
But as time goes by
Each occurrence of lostness is quieter
Falling from notice
Like the sound of trains
When you live near the tracks
Until one day
When a friend asks
“How often do you get lost?”
And I strain to recall a single instance
It was then that I realized
Being lost only has meaning
When contrasted with
Knowing where you are
A presumption that slipped out of my life
As quietly as smoke up a chimney
For now I live in a less anchored place
Where being lost is irrelevant
For now, only when there is a need
Do I discover where I am
No alarm, no fear
Just an unconscious check-in
Like glancing in the rear-view mirror.

Bon voyage. AP

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Be Mindful!

Posted on September 2, 2011 by Allen

My friend, Marguerite Manteau-Rao recently posted advice for families caring for loved ones living with dementia. It’s good advice for all of us. Marguerite can be found regularly on the Huffington Post at http://www.huffingtonpost.com/marguerite-manteaurao.

As many of us do, Marguerite starts with fairly traditional language and slowly introduces new words and ideas:

Marguerite Manteau-Rao LCSW, ATR,

Mindful living advocate

13 Essential Tips for Dementia Caregivers
Posted: 8/24/11 09:20 AM ET

The journey of dementia is never easy, and it can be made many times worse if family members do not have the internal tools to take care of themselves and their loved ones. Here, based on years of experience in successfully navigating the dementia care landscape, are 13 tips that may save you a lot of grief as a care partner (caregiver) of someone with dementia.

1. Start your day with a few minutes of sitting mindfulness practice, and end the same way.

Mindfulness practice, even for a few minutes a day, can reduce stress. It is also a good way to start your day from a calm, centered place, which is what your loved one needs most from you. If you’re not sure how to practice, simply find a quiet place, close your eyes, sit in an alert yet relaxed posture, take a few minutes to check in with yourself and then turn your attention to your breath. Let your body breathe, and simply watch the in and out flow of your breath. You will notice thoughts and sounds coming and going. That is a normal part of the experience. When that happens, simply return to observing the breath. Sit like this for a few minutes.

2. Incorporate mindfulness into your routines: walking, doing chores, caring for loved one, etc.

The same way you were observing your breath while sitting, you can also pay attention to the sensations of your feet on the ground while walking. You can practice while walking alone or with your loved one — the slower the better. While washing your hands, you can become aware of the sensations of the water running over your hands. While assisting your loved one with dinner, you can focus on the experience of filling up the spoon, bringing it to the person’s mouth and their experience of eating. Remember, it is about being present for the experience in the moment, all of it and regardless of what it is. You may do this as often as you want throughout the day.

3. Practice recognizing and being with your emotions, including difficult ones.

When caring for someone with dementia, you are bound to experience many — and sometimes difficult — emotions: grief, anger, boredom, tiredness, fear, anxiety, frustration. A very powerful and simple practice is to simply acknowledge the emotion and its physical manifestations in your body. Where am I feeling it? How does it feel? What are the sensations? Also, recognize whether it is pleasant or unpleasant and feel the whole extent of the pleasantness or the unpleasantness. And when you need a break, focus your attention on the breath and watch it come and go. Lastly, identify the thoughts that come with the emotion and see where you are getting caught. Are there changes you can make in the outside world, or do you need to change your attitude?

4. Practice loving kindness for yourself, and also for your loved one.

When the fear or the anger get to be too much, mitigate with some kind energy of your own. Think about someone, something or a place that is very dear to you. Feel the love and kindness emanating from your heart and send it to yourself. While you may not “believe” in it at first, trust that it will make its way through to you eventually. You are working on rewiring your brain, and it takes time! Quietly say something like this to yourself: “May I be at peace, may I be at ease,” and repeat a few times, wishing you well. You may then send that same kind energy to your loved one, this time repeating the words, “May you be at peace, may you be at ease,” wishing him or her well. This is a simple yet very powerful practice if you do it often.

5. Share your mindfulness practice with at least one other care partner.

When led into a sitting mindfulness practice for the first time, caregivers almost always report feeling incredibly at peace and say they wish they could start their days in that way. Then comes the question of: Why not? That’s the thing about mindfulness — simple in principle, yet very difficult to practice and sustain on one’s own. Unless you find at least one other person to practice with or who encourages you to practice every day, chances are you will not keep up with it. It could be another family member, the paid caregiver who is helping you or people in your local caregivers support group.

6. Put your emotions out, either in writing, collages or other expressive art forms.

When emotions run strong, and you don’t know what to do anymore, one practice is to put your emotions out through simple, expressive art techniques. No need for fancy supplies. You can journal, you can write poetry. You can do self-collages, tearing images that grab you in old magazines and placing them on a sheet of paper, without giving too much thought to it. You are turning off your rational brain and letting your heart speak through words or found images. The point is not to be a poet or an artist — it is about you literally “expressing” what is inside of you.

7. Share your joys and struggles with other care partners like you.

There are plenty of support groups out there, where you can find emotional relief in the telling of your story and the sharing of your joys and your struggles. You need to guard against the temptation of isolation, however. As a family caregiver, you are at high risk of depression (http://www.alz.org/downloads/Facts_Figures_2011.pdf) and consequently are more likely to be tempted into retreating and not reaching out to others for emotional support. A good rule of thumb is this: The less you want to socialize, the more you need it for your own sanity and also the well-being of your loved one.

8. Get others to help you.

If it takes a village to raise as child, it takes a whole care team to provide good care to a loved one with dementia. It is not humanly possible for a single person to do this, particularly as the years unfold and your loved one requires more and more assistance cognitively, emotionally and physically. If you are someone who has always prided herself in being self-sufficient, you will have to shift your attitude. Getting the help you and your loved one need is a sign of psychological strength. There are many who are there to help you: geriatricians, neurologists, geriatric care managers, nurses, home health agencies, other family members, physical therapists, psychotherapists, financial planners, volunteers, etc.

9. Get enough sleep, eat well and exercise.

As important as your emotional health is keeping your body strong and healthy. With the stress from dementia caregiving, one may be tempted to eat not enough or too much, or stop exercising altogether. Worries about your loved one wandering or accumulated nervous fatigue from a long day of care may dampen one’s ability to sleep. Associated with these lifestyle changes are recent statistics from the Alzheimer’s Association (http://www.alz.org/downloads/Facts_Figures_2011.pdf) showing that caregivers are at a substantial increased risk for hypertension and cardiovascular disease. You need to remember that your physical health comes first. Make it a point of having only healthy foods in the home and of walking as much as possible.

10. Validate the person’s reality.

The person’s experience of the world and their relation to it has changed, and there is nothing he or she can do about it. You, on the other hand, have it in you to make some adjustments. Not doing so will only cause more suffering for your loved one and more trouble for you, since your loved one will have to act out his or her suffering in one way or another. Yes, you may be attached to the idea of your loved one as your husband, but if he insists on calling you his daughter, go with the flow and remember that for him, you have fallen into the more general “love” category. The fine distinctions we usually make between various roles no longer apply.

11. Still see the person as a whole person, and behave accordingly.

Beware of falling into the trap of positioning (http://changingaging.org/alpower/2011/05/09/learning-and-dementia-rant-537/) the person as incompetent, as a child or someone who is no longer there. Holding these ideas will act as a self-fulfilling prophecy and influence your behavior in such a way as to cause the person to behave more and more as if there is no one there. Rather, operate from the premise that the person is still very much there, no matter what it may look like from the outside. Do not expect anything and welcome the surprises when they come, as they often times do with persons with dementia. A smile, a word, a sentence, singing an old song, dancing — you never know.

12. Meet the person’s five universal emotional needs. (www.dementiacareaustralia.com/index.php/library/5-universal-emotional-needs.html)

Regardless of their cognitive, emotional, physical state, human beings all have five universal emotional needs: 1.) to be needed and useful, 2.) to have the opportunity to care, 3.) to love and be loved, 4.) to have self-esteem boosted, 5.) to have the power to choose. When caring for your loved one, make sure that each of these needs is being met. Failure to do so will negatively impact his or her well-being and will lead to either shutting down or agitation. For someone who no longer speaks or moves, honoring that person’s need to be needed may mean telling them how sitting next to them brings you a sense of peace.

13. View the person’s difficult behaviors as expressions of unmet needs. (http://www.themythofalzheimers.com/blog/index.php/2010/02/01/dementia-beyond-drugs-a-qa-with-dr-allen-power-part-1/)

Adopt the point of view that any behaviors, particularly difficult ones, are the person’s attempt to communicate distress, using the limited means of communication at their disposal. They are not being difficult, they are simply telling you that something needs to be attended to urgently. Too much noise or not enough, a brief that needs to be changed, being thirsty, not being “seen” for the person they are, pain somewhere in the body, temperature that’s too hot or too cold, a sense of personal space that’s being invaded, words that don’t come out as intended … so many possible reasons to get upset that may not be obvious to you. You need to become a detective and figure things out. But before you do, take your loved one’s distress seriously, not personally.

And remember, this is not just for you alone to practice. Instead, get the whole care team to join you, and together become more mindful and understanding. It will be good for you, and it will be good for your loved one.

Follow Marguerite Manteau-Rao on Twitter: www.twitter.com/MindDeep

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