The Hitchhiker’s Guide to Dementia

By / Posted on September 10th, 2015

Dr. Al Power will be conducting an all day preconference session along with a plenary and education session at The Eighth Annual Green House Meeting & Celebration in Broomfield, CO from November 16-18th. The annual meeting is for Green House members only and this year’s theme is Better Together.  The title of Dr. Power’s preconference session is “Reframing Dementia.”  His plenary session is entitled “Living Better Together with Dementia: Taking it Further” and his education session is “Real Life Without Antipsychotic Drugs.”  Log-in to the Peer Network website today to register for the meeting so you can hear from Dr. Power first hand!

 

Like most people, I am subject to a regular barrage of media reports, coming from radio, television, internet news outlets, social media and daily RSS feeds. And here is what this information stream has taught me:

If I eat blueberries, I’ll lower my risk of Alzheimer’s. Or was that tomatoes? It now appears that yogurt lowers the risk as well—does that mean blueberry yogurt, or will any old flavor do? Maybe I should have coconut flavored yogurt, because apparently, if all that coconut oil doesn’t kill me with a heart attack, it may make my brain healthier.

And now it appears I may have to replace my plumbing, because a new study suggests that too much copper causes Alzheimer’s; though other medical studies have shown that a high copper intake actually lowers the risk. So which is it? And is lead involved? (I need to know because I tend to chew on my pencils when I do my daily Sudoku puzzles.)

And then there’s the glucose connection, the blood pressure connection, the inflammatory connection, the brain reserve connection, the mood disorder connection, the social connections connection.

And what kind of a teenager was I? Apparently, certain adolescent behaviors raise your risk. One of them is getting drunk; well, thank God, none of us ever did that! Also, it’s a risk if you have a history of adolescent antipsychotic use. (Tell that to the psychiatrists who are finding all kinds of new reasons to prescribe these drugs to young people, from depression to “oppositional disorders”.)

Another risk factor (cue Randy Newman) is being too short. Time to get out the gravity boots? And if that weren’t bad enough, now the folks in Manhattan say dementia can come from exposure to bacterial and viral infections. (Someone sneezed on me just the other day, and I swear my ADAS-Cog score dropped two points!)

Okay everyone, are you listening to me?? STOP! Just…stop. If there were a “Hitchhiker’s Guide to Dementia”, the first words would still be: “Don’t panic.”
Time…to…take…a…deep…breath.

What we have here is a collection of illnesses closely tied to the aging process, and a sequence of changes that may begin decades before we show any outward signs. And we are dissecting all the minutiae of the millions of things we do, eat, drink or experience in our lives—trying to find connections, however tenuous, that we can shoot to the media outlets to fuel the frenzy.

There are a lot of people making money off of our hysteria and paranoia. But it’s much worse than that.

You see, the more we fuel this kind of panic, the more we demonize the condition; and consequently, the more we demonize and dehumanize people who live with cognitive disability. Folks like Dr. Bill Thomas have long warned us that those people who do less or produce less are devalued in our society. It is also now clear that a similar fate befalls those who remember less in our hyper-cognitive, technology-obsessed world.

Here are a couple of known facts to keep in mind: We all die. Many of us who live to a ripe old age will experience changes in various organ functions and capabilities. Many of us will become forgetful as we reach our later years. Those who do are not bad people.

There is so much emphasis on “successful aging” these days—what does that mean? Are you successful if you run marathons until you are 96 and then die in your sleep, or at the completion of some incredible sexual escapade? That’s romantic, but highly subjective and unlikely. More important, this fixation on how we end our lives not only threatens to devalue who we are in our last years, but also how we have lived all of the earlier days of our lives.

And if you don’t make it to the grave with all of your organ functions intact (an oxymoron in itself), what is that called? “Failed aging”? What about people born with developmental disabilities or congenital illness? They would be “failed agers” from the very start. No need to even give them blueberries and yogurt, I guess.

You and I will always be more than the sum of what we can do and what we can remember. So here’s the advice I would put in my “Hitchhiker’s Guide”:

No matter who you are or how you live your life, you have a chance of becoming forgetful as you age. Your risk is never zero, but no one knows your exact “number”. You can almost certainly lower that risk somewhat if you eat well, exercise and do things that are good for your body, mind, and spirit; your risk will probably go up if you abuse any of those. But being obsessive about every little thing you do will likely not improve your odds to a greater extent than healthy moderation.

Find that “sweet spot” that gives you a life worth living. When we stop indulging the fear mongers, we can see the value in people of all abilities. This will help us to visualize a true path to well-being for all.


"Expect the Best!"

By / Posted on January 15th, 2015

My work often brings to mind my good friend and mentor, Nancy Fox. Nancy is Chief Life Enhancement Officer for Vivage in Colorado, was the first Executive Director of The Eden Alternative™, and has many years’ experience as an administrator and an educator. The lessons she has taught me pop into my head on many occasions.

In 2007, Nancy wrote a book called Journey of a Lifetime: Leadership Pathways to Culture Change in Long-Term Care (available at www.edenalt.org or online booksellers). The book lists ten important principles for enlightened leadership, illustrated by stories of good and not-so-good experiences she has had, and lessons learned. One of these is called “Expect the Best,” a principle that is ignored with alarming regularity in long-term care, on both the provider and the regulator sides.

Here is an example of each:

First, a recent McKnight’s article described a study in the upcoming issue of Geriatric Nursing that can only be described as what my friend Jane Verity would call “a blinding flash of the obvious.” This study of nursing homes in the US and Germany showed that CNAs had a much better work experience if they were notified of the deaths of their elders before discovering it for themselves (such as walking into a room to provide care and finding an empty bed). The study recommended “more mindful” approaches to such transitions for those who have formed close, caring relationships.

Wow. What’s sad about this study—even the need to conduct such a study!—is that it reveals how often we give lip service to honoring our hands-on care partners, but choose actions that say the opposite. Then we are quick to blame those same people for lack of a “work ethic.”

Look at your employee handbook and ask yourself, does this document expect the best of our employees? Does it treat them as responsible adults or as children (or worse yet, as potential criminals)? Then look at the actions and interactions of leaders and managers throughout the day. Are our care partners included in decision-making discussions? Do we ever ask for their opinions or advice?

Expecting the best creates two complementary results—it improves people’s abilities and their accountability. Nancy frequently says that “empowerment is not something you try; it is something you do.” When we approach those who support our elders with an expectation that they are capable of great wisdom and growth, we create an environment where growth can occur and wisdom will blossom. And by treating people as equals, we create an environment where people care about each other and about the consequences of their actions, and accountability thrives.

Such discussions raise the inevitable objection that there are people who will take advantage of your good intentions and try to game the system. Welcome to the planet Earth. The problem not that such people exist; the problem is that we write our policies and choose our actions based on the worst person we can imagine and punish everyone else with our low expectations, rather than addressing (or removing) the individual in question. Nancy would likely say, “Expect the best, (and individually address the worst).”

The second example was raised by Karen Schoeneman, formerly of CMS, in a recent culture change discussion that highlights this issue on the regulatory side. She was upset to hear that surveyors in her home state were not permitting elders to have refrigerators in their rooms because of the concern that a resident with diabetes could potentially enter the room and take something that would not be good for his/her diet.

There is so much wrong with that citation that I could devote an entire post to it. But let’s stick with “Expect the Best,” as it applies to surveyors. The fundamental flaw in our regulatory system, I believe, is that surveyors inhabit a primary identity as enforcers, rather than educators. Therefore, they come into the nursing home expecting the worst and constantly imagining “What could possibly go wrong?”

(Of course, Nancy added her two cents to the discussion thread as only she can do, suggesting that perhaps “surveyors shouldn’t be allowed to drive, because they might hit a diabetic.” If it’s possible to laugh and cry at the same time, that’s what I did when I read her comment.)

Incidentally—to be fair to surveyors—many of them work in states where they are required to be enforcers only, because the rules say that they cannot advise providers, only tell them if what they are doing is “in compliance” or not. Apparently the concern is that surveyors might lose their objectivity if they try to mentor the homes. And apparently the rule makers have never heard of school teachers, who mentor their students every day and still give them quarterly grades. If the regulatory bosses don’t expect the best of their surveyors, then a trickle-down effect at survey time is entirely predictable.

These are two examples of why I sometimes despair that our current system of elder care will never truly create well-being for anyone. There is far too much talk about “culture change” and too little evidence of it. Nancy Fox is one person who has always walked the talk. We would all do well to read, or re-read, Nancy’s book.


BBC Reporter Visits Penfield Green House homes in Rochester, NY

By / Posted on July 30th, 2014

I was contacted by Sally Magnusson, a news anchor from BBC Glasgow and author, whose parents were both pioneers in UK broadcasting. She wrote a book called, Where Memories Go, about her mother’s journey with Alzheimer’s; and she is now planning a book about Alzheimer’s and music. She contacted Dan Cohen (Music and Memory) to visit a home in NYC that’s using iPods, and he suggested she contact me, so she wrote to ask if she could fly up and visit during her trip.

We got together Saturday night to talk about my work on Dementia Beyond Disease and I had suggested that she visit Penfield Green House homes while she was in town. Green House guide, Kris Angevine and the elders/staff nicely accommodated us on Sunday morning for tea. We stopped at Malek’s, my favorite bakery, and got a couple of chocolate babkas, as well as bringing copies of my book for the homes.

When we arrived, Wendy Bacon-Stopani, one of the wonderful Shahbazim, was making a birthday cake, as well as some chicken cordon bleu for lunch. She explained the Shahbaz role to Sally and the collaborative nature of the work, with everyone pitching in to help out. Wendy said she wasn’t a natural chef, but had learned a lot at the home, and it showed!!

We sat at the dining room table sharing coffee, tea, and babka with several elders, including Lou, Martin, Don, Frannie, Marguerite, and Sarah. We shared stories, and we got a house tour from Dorothy who is a great hostess. Lexi, the new house dog also joined in the visit — what a wonderful dog she is!!

Although Sally’s original plan was to talk to the elders about their experiences with music, it was really just more of a social visit and a non-directed conversation. Sally found everyone to be delightful and loved the home. It was a whirlwind tour of innovation stateside, that will surely be remembered by this BBC reporter.


An “Administration for Community Living”? Yes, but…

By / Posted on May 10th, 2012

Last month, HHS Secretary Kathleen Sibelius announced the merging of the offices for Aging, Disability, and Developmental Disabilites, to form one new agency. This “Administration for Community Living” is designed, in the Secretary’s words, “to help ensure that the supports people with disabilities and seniors need to live in the community are accessible.” She goes on to say that the term “support” includes not only health care, but also appropriate housing, employment, education, meaningful relationships, and social participation.”

Much of the description is encouraging, and the efforts of organziations like the Eden Alternative to change the culture of aging, both in nursing homes and the community, seem well-aligned. One advantage of the alliance of aging with disability agencies is that it may encourage a broader view of the capabilities of people with dementia or age-related disorders to be included in meaningful ways. The comments about social participation for elders, with or without dementia, are most welcome.

At the same time, I have some misgivings. The concept has many positive features, but it’s tricky terrain to navigate in light of our history of aging in America, and things could easily go the wrong way.

First, the pairing of aging with disability may enhance our tendency to see aging as decline, and further medicalize this stage of life for all elders. Along with that “declinist” view come all the trappings of disempowerment and stigmatization that have led us to where we are today.

Second, full social participation is a great concept, but goes strongly against what our society has done for the past several decades. Is this a feel-good statement, or are we ready to pursue this in an honest manner? Are we ready to bring elders to the tables of our communities–even if they don’t have a job title or position power, even if they live with some forgetfulness–and truly listen to what they have to say?

The third issue is a larger one that I explored during my time away with my friend Emi Kiyota, which I’ll be addressing in future posts as well. That is the idea that aging has become a commodity in our society. Older people are seen primarily as consumers of services that are designed by others, for them. An entire industry has been built around this and in doing so, has marginalized elders and repositioned them as needing care and services, creating excess disability.

A prime example of this is the way in which we have sunk untold millions of dollars into senior living communities, rather than redesigning neighborhoods to be more accessible and inclusive. Are we ready to reverse this trend to create true community integration?

Lastly, Secretary Sibelius’ opening statement said (with my emphasis): “All Americans–including people with disabilities and seniors–should be able to live at home with the supports they need, participating in communities that value their contributions–rather than in nursing homes or other instituions.” Strong words. But does this mean aging in community, or aging in place?

Is there true community participation and reciprocity, where others will “value their contributions”, or is this simply housing that becomes a de facto “separate but equal” situation, due to a lack of accessibility for all? Will there be community gathering places that are truly multi-generational, or will the elders only have a “senior center” nearby for their use? Will the elders be consulted and engaged for their wisdom and experience, or will they simply be served by the other generations? One solution is affordable for society and empowering for elders–the other is neither.

(Parenthetically, I gave two talks last week at local community centers. Both had a “Senior Citizen Room”. That is not inclusion.)

This is the time to raise these issues, and this new agency will hopefully spur much more discussion of these topics. Our aging demographics demand it.

Tell us what you think!

Read more posts like this on the Allen Power blog at Chagingaging.org.


Moving Day for St. John’s in Rochester!!

By / Posted on February 28th, 2012

REPOSTED

Visit the original post at ChangingAge.org

“But let there be spaces in your togetherness and let the winds of the heavens dance between you. Love one another but make not a bond of love: let it rather be a moving sea between the shores of your souls.”

Khalil Gibran

The above quote was posted today by Susan Thomas for St. John’s “Eden Quote of the Day”, in honor of the first three Elders moving into our community Green Houses in Penfield, New York. This is the culimination of an incredible journey for St. John’s Home.

It has been exactly a decade since I went to hear Bill Thomas give a talk in Utica about his latest thoughts about Elderhood. At that talk, Bill described his concept of “doing vs. being”, and his visions for “Eldertopia”.

In 2003, the first Green Houses opened in Tupelo, Mississippi. Our CAO, Veronica Barber went to visit them, and on her return she told our CEO, Charlie Runyon, “We have to do this.”

Then about four years ago, with the encouragement of former DOH Dormitory Authority Director Tom Jung and Assistant Health Commissioner Mark Kissinger, we decided to take one more very big step: we decided to bring Elders back to true community engagement, by moving off campus and integrating our Green Houses into residential communities.

This set off a series of twists, turns and setbacks that pushed us back a few years in our timeline, but what we leanred in that process about our vsision, our strengths and challenges, and about our Eden journey was priceless.

And today is the payoff as, for the first time in our nation, the first pioneering Elders move to a pair of small houses 11 miles away from the main campus, nestled in the multigenerational Arbor Ridge community. Guide Rebecca Priest has been the lighthouse for this journey and her group of shahbazim, nurses and other supportive care partners is truly incredible. Very soon after, the remaining 17 Elders, people with diverse needs and abilities, will follow.

So many people have put their hearts and souls into this journey that it is impossible to mention them all. In addition to the visionary leaders mentioned above, I must make a special note of Joanne Braunle, our Project Manager, who formerly worked on NASA contracts and showed us that culture change really is rocket science! The builders at Pridemark, architects at SWBR, and our pre-design work with Emi Kiyota all made incredible contributions to the beautiful, warm and functionally versatile houses we open today.

And of course, a huge thank you to The Green House Project, especially Robert Jenkens and Susan Frazier for their guidance and tireless advocacy, and to Bill and Jude Thomas and the Eden Alternative, who have helped shape our new vision of Elderhood that will truly be a game-changer in providing living options for Elders with skilled needs across the nation and beyond.

Way to go, St. John’s; my hat is off to you!!


Moving Day for St. John's in Rochester!!

By / Posted on February 28th, 2012

REPOSTED

Visit the original post at ChangingAge.org

“But let there be spaces in your togetherness and let the winds of the heavens dance between you. Love one another but make not a bond of love: let it rather be a moving sea between the shores of your souls.”

Khalil Gibran

The above quote was posted today by Susan Thomas for St. John’s “Eden Quote of the Day”, in honor of the first three Elders moving into our community Green Houses in Penfield, New York. This is the culimination of an incredible journey for St. John’s Home.

It has been exactly a decade since I went to hear Bill Thomas give a talk in Utica about his latest thoughts about Elderhood. At that talk, Bill described his concept of “doing vs. being”, and his visions for “Eldertopia”.

In 2003, the first Green Houses opened in Tupelo, Mississippi. Our CAO, Veronica Barber went to visit them, and on her return she told our CEO, Charlie Runyon, “We have to do this.”

Then about four years ago, with the encouragement of former DOH Dormitory Authority Director Tom Jung and Assistant Health Commissioner Mark Kissinger, we decided to take one more very big step: we decided to bring Elders back to true community engagement, by moving off campus and integrating our Green Houses into residential communities.

This set off a series of twists, turns and setbacks that pushed us back a few years in our timeline, but what we leanred in that process about our vsision, our strengths and challenges, and about our Eden journey was priceless.

And today is the payoff as, for the first time in our nation, the first pioneering Elders move to a pair of small houses 11 miles away from the main campus, nestled in the multigenerational Arbor Ridge community. Guide Rebecca Priest has been the lighthouse for this journey and her group of shahbazim, nurses and other supportive care partners is truly incredible. Very soon after, the remaining 17 Elders, people with diverse needs and abilities, will follow.

So many people have put their hearts and souls into this journey that it is impossible to mention them all. In addition to the visionary leaders mentioned above, I must make a special note of Joanne Braunle, our Project Manager, who formerly worked on NASA contracts and showed us that culture change really is rocket science! The builders at Pridemark, architects at SWBR, and our pre-design work with Emi Kiyota all made incredible contributions to the beautiful, warm and functionally versatile houses we open today.

And of course, a huge thank you to The Green House Project, especially Robert Jenkens and Susan Frazier for their guidance and tireless advocacy, and to Bill and Jude Thomas and the Eden Alternative, who have helped shape our new vision of Elderhood that will truly be a game-changer in providing living options for Elders with skilled needs across the nation and beyond.

Way to go, St. John’s; my hat is off to you!!


The Power of Choice

By / Posted on November 28th, 2011

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. (more…)


Why People Move to Nursing Homes

By / Posted on October 25th, 2011

Posted on October 25, 2011 by Dr. Al Power, St. John’s Living

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.

(more…)