Green House Blog

The Hitchhiker’s Guide to Dementia

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.

Surplus Safety: A Symposium To Redefine Risk

Drs. Judah Ronch, Dean of the Erickson School of Aging, and Dr. William Thomas, founder of the Eden Alternative and Green House Project, have coined a new term and developed a new concept called surplus safety. Instead of risk meaning the possibility that only something bad might happen, they teach that the real definition of risk is the possibility of an unanticipated outcome. They further explain that there are two kinds of risk, upside and downside. Downside risk is an outcome that is worse than expected and upside risk is an outcome that is better than expected. They point out that our obsession with downside risk unfortunately leads to the taking away of any chance of upside risk for those living in long term care environments and that we prevent outcomes better than expected (upside risk) because we our obsessed with minimizing the risk of a worse outcome. Dr. Thomas as a physician and Dr. Ronch as a psychologist point out that no other part of the human life cycle allows this removal of upside risk. For instance, we do not restrain toddlers as they try to learn to walk because they might fall. Not too many people talk about our development and growth at an older age but thankfully they do. Each advocate that our human development includes a balance of both upside risk and down side risk.
The current landscape of safety where the current conception of risk includes only downside risk – in which harm may come to elders if they attempt certain activities such as getting out of bed – has resulted in very restrictive policies and practices, such as bed and chair alarms. Many safety measures, such as alarms, are designed with only downside risk management in mind i.e. preventing falls. However, the upside risk of preserving one’s ability to continue walking and to keep their balance and strength are not evaluated. Nor is the other downside risk of losing these abilities talked about. Nor is the quality of life considered according to the person of being immobilized by an alarm or agitated or isolated. Therefore, there is a strong need to look at upside risk management in addition to the traditional focus of managing downside risk.

Thus the first-ever Surplus Safety Symposium was held on September 12 – 13, 2012 in Baltimore, MD. Many thanks to the Hulda B. and Maurice L. Rothschild Foundation for funding and to the Erickson School for hosting this event.
Approximately 50 stakeholders from a diverse group of constituencies discussed the current state of the safety landscape. Experts addressed the areas of: Policy as Written and Interpreted; Risk Assessment Methodologies; Case Law; Management and Workforce Conditions; and Resident Perspective presenting key issues and identifying levers of change. Workgroups then recommended ways to implement a strategy to change how risk is perceived, understood, managed and regulated.

The goals for the two-day symposium were to:
1. Identify strategies to promote a full evaluation of risk vs. potential outcomes in long term care.
2. Reframe the current concept of safety to better balance both upside and downside risk potential.
3. Identify codes and standards which should be addressed in order to better balance upside and downside risk.
4. Identify stakeholder groups to enlist in seeking necessary code and standard changes.

Some ideas collected (not consensus) were the following:

• Consider using probability instead of potential for harm in the CMS scope and severity grid; gather the research to back the use of probability of harm instead of potential which can be anything.
• Consider adding to every regulation “if the resident desires” or “according to the resident;” for example, Tag F363 Menus be followed if the resident desires.
• Discontinue making policies for the 1%, make the policies for the 99%. Broad global policies limit life for the 99%, individualize polices by stating that individual care plans will be adapted for each person in relationship to risk, safety, etc.
• Copy the CMS survey process for homecare where whatever provider has done is recognized and considered into survey findings.
• Incentivize like Colorado P4P bonus reimbursement and Ohio Medicaid Reimbursement where homes must implement a subset of person-directed practices in order to receive full reimbursement.
• Include each person’s goals for themselves and their perspective on risk. This should be individualized based on how much risk they want/can tolerate. Kind of like investing in 401K plans, some of us prefer low risk, others moderate or high risk. Risk needs to be determined by the Elder primarily, and not by surveyors, corporate leaders or other professionals who assign this determination based upon what they think is best for all parties involved.
• Concept of safety is one dimensional regarding the body. Need to add mind/spirit, psychosocial.
• Immediate Jeopardy includes potential for harm which is so very easy to cite, easier to cite IJ than a G. This needs to change because it has the greatest sanction associated with it – possibly move potential for harm somewhere lower down on the grid.
• Equitable attention to all relevant regulations; treat all requirements the same. Preventing accidents is just as important as resident has the right to refuse medical treatment or right to choice.
• Eliminate FOSS/federal surveys as they are over burdensome and do not result in better care for residents; redirect those resources to training of how culture change practices embody intent of OBRA ’87 Nursing Home Reform Law and current regulations.
• Explore legal strategies to promote resident choice and consistent enforcement of all regulations.
• Recognition that accidents happen – differentiate between accident and neglect/systems failure.
• Reconsider the current metrics for success and incentives: do we incentivize surplus safety or highest practicable physical, mental and psychosocial well-being?
• Research the benefits to upside risk.

As you can see, many good ideas on how to eliminate surplus safety were collected. According to Rob Mayer of the Hulda B. and Maurice L. Rothschild Foundation, this is just the start. Be on the alert for more to come. In the meanwhile, do whatever you can to promote the balance in every person’s life of both upside and downside risk. Better yet, do all you can to promote that the person continues to be the boss of their life. Promote this daily with persons you serve. Call for meetings with your survey agency that is to serve the persons living in nursing homes and assisted livings in your state. Lean on your state culture change coalition to bring up these issues in already-established stakeholder meetings. Don’t wait for someone else to do something. See what you can make happen. Go get famous. Eden has a great motto: “It’s Time.” Actually, it’s past time. We all want better.

Carmen Bowman, Regulator turned Educator, owner Edu-Catering: Catering Education for Compliance and Culture Change and Facilitator of the 2012 Surplus Safety Symposium