Making a Profound Difference

By: Jackie Pinkowitz
Chair, CCAL – Advancing Person-centered Living

two-roadsAs November’s chill fills the air and autumn leaves begin to fall, our hearts and minds naturally turn to thoughts of Thanksgiving, a holiday that invokes coming together with kindness and caring towards one another.

The Picker Institute describes their Always Events® as “… aspects of the patient (person) and family experience that should always occur when patients (individuals) interact with health care professionals and the delivery system.”

Imagine the profound difference we could make across our country if each of us would always show kindness and caring to those we care about and for; i.e., if we made Kindness and Caring A Nationwide Always Event® and applied them consistently, both in our personal lives and in our roles as informal or formal care partners, family members, professionals, providers, and policymakers.

Elton John and Tim Rice’s thought-provoking song “Circle of Life” fittingly describes man’s eternal challenge:

“From the day we arrive on this planet…there’s more to see than can ever be seen, more to do than can ever be done.”   We must “…find our place on the path unwinding in the circle, the circle of life.” 

As we continue to find our place on that path, may we come to realize that what we do and say each day has greater impact, greater reach, and far greater importance than we might ever imagine as we are doing or saying it.  Poet James W. Foley (1874-1939) beautifully evokes the effects our words can have on others:

“Drop a word of cheer and kindness; just a flash and it is gone; But there’s half-a-hundred ripples circling on and on and on, Bearing hope and joy and comfort on each splashing, dashing wave; til you wouldn’t believe the volume of the one kind word you gave.”
“Drop A Pebble in the Water”

Indeed, Mother Theresa acknowledged the magnitude of this impact when she said:
“Kind words can be short and easy to speak, but their echoes are truly endless.” 

In this season of gratitude, may each one of us aspire to creating  a  national culture of caring, respect, and kindness that will promote person-centered care, services, supports and meaningful living for all.

“Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them and try to follow where they lead.”  Louisa May Alcott  (1832-1888)

Setting Standards for Dementia Care

ann ellettby: Anne Ellett, Nurse Practitioner, M.S.N., Gerontology Consultant, has worked in the arena of elder care and gerontology for more than 2 decades. Most recently, she held the position of Senior Vice President at a national company that was a recognized leader in caring for elderly, specializing in dementia care.

It was good news to read that at the Assisted Living Federation of America’s (ALFA) most recent national conference in May, setting standards for dementia care was identified as a critical issue for their organization. Studies indicate that up to 60-70% of residents living in assisted living are affected by memory changes such as MCI (mild cognitive impairment), Alzheimer’s disease, vascular dementia or some other type of dementia. Current types of care programs often fall far short of meeting the unique needs of these residents.

Providing compassionate and life-affirming care for people living with dementia is complex. The pervasive culture of “person-centeredness”, providing care that is individualized and respects the “whole” person, needs passionate leadership, adequate staff training and engagements that are stimulating and interactive. This type of care is not easy to deliver. We can hope that ALFA’s focus on setting standards for dementia care will provide the “top down” support for dementia care providers to assess their programs and improve as needed.

Consumers shopping for senior housing may assume there are already standards in place for dementia care. Almost every assisted living sells itself as providing “memory care” for their residents. Unfortunately, not every assisted living community has done its “homework” and prepared a safe and life-affirming environment for their residents affected by dementia.

Each state has its own regulations defining which type of assisted living can provide care for people with dementia. There are no national standards. Most states have regulations that require some additional training, but it varies from 6 hours up to 40 hours of training. Some states require that there is nursing on-site, other states may only require a nurse available “on-call”, or no nurse at all. Most states don’t specify staff ratios for caring for individuals with dementia, but will write something vague like “staff must be adequate to provide for the health and safety of the resident” – interpretation is left to the dementia-care provider..

As consumers of dementia care services, it behooves you to ask questions of potential providers: If you’re moving your loved one into a memory-care assisted living, what are their standards? Can they explain those standards to you and also explain how they operationalize them – how many hours of training does their staff receive? What is the ratio of direct care staff to the residents? How do they handle emotional outbursts (behavioral expressions) by residents? Do they have a medical director or other health care providers who visit the residents on-site? What is their system for handling a resident who becomes ill?

It’s not enough to pour all our national resources into finding a cure for dementia. The national crisis is in the immediate need for developing better models of care. As customers of dementia care, you can help improve standards of care by asking questions of assisted living providers and showing them that you expect trained personnel, adequate

Are Dementia and Pleasure Mutually Exclusive States?

Chris Laxton expertby Chris Laxton, Executive Director of AMDA, the Society for Post-acute and Long-term Care Medicine

Dementia, including Alzheimer’s disease, confronts us with a challenge: How do we live fully – with dignity, meaning and happiness – in the face of progressive disability and, ultimately, death? Those living with dementia have cognitive and decision-making impairments that often make them unable to answer this question. And when those who provide care and services for them fail to recognize what is meaningful, positive and pleasurable for persons with dementia, they suffer. Furthermore, we need a health care system that fosters dementia-capable caregiving, so that everyone has the opportunity to live fully, with dignity and well-being. Why don’t we have such a system, and what do we need to do to achieve it? Continue reading

In a New York Times editorial last year (“Too Young to Die, Too Old to Worry,” Sept. 20, 2014), Jason Karlawish, MD, a professor of medicine, medical ethics and health policy at the University of Pennsylvania, presented a thought-provoking question: “When should we set aside a life lived for the future, and, instead, embrace the pleasures of the present?” He also offered this challenge: “A national investment in communities and services that improve the quality of our aging lives might help us to achieve this.”

Dr. Karlawish, who will present a keynote address at the 2015 AMDA annual conference in Louisville this month, reminds us that this issue is highly significant for those living with dementia, including Alzheimer’s disease, and their care partners, as they are on the front line in considering the lingering question of how to live fully with the time they have left. Is it an absolute necessity that living with dementia means a life spent “fighting the disease” – or can we posit that a life lived fully is actually a higher value?

“Aging in the 21st century is all about risk and its reduction,” says Karlawish. “Today, 3.6 percent of the [U.S.] population is over 80, and life is heavily prescribed not only with the behaviors we should avoid, but the medications we ought to take. More than half of adults age 65 and older are taking five or more medications or supplements, many of them designed not to treat acute suffering, but instead, to reduce the chances of future suffering.”

Often, families and other care partners think they are doing the right thing for their loved ones by imposing burdensome treatments or interventions. But Dr. Karlawish suggests we ask family members what constitutes a good day even when a person has advanced dementia. “We need to focus on what gives pleasure now, in the present,” he says. This can be a challenge, but it’s an important one. “When individuals have dementia, their lives – their very selves – are constructed by the people around them. We shape their personhood, and that is a tremendous moral responsibility.”*

Taking on this responsibility is at the essence of person-centered care – a concept at the very heart of what we call “dementia-capable” models of care delivery, communities, and caregivers. Let’s work together to bring such a system into being. An entire generation of those living with dementia, and their care partners, deserve no less.

*Excerpted from “Keynoter Puts Patient Pleasure First,” Caring for the Ages, January 2015.

There is No One Better Than YOU to Speak Up

by Michael Ellenbogen, Dementia AdvocateMichael Ellenbogen

I am going to start with the end in mind. You can do all this no matter what your challenges are. In 2008 I was given a diagnosis of Alzheimer’s disease after struggling for 10 years. As a workaholic I found it difficult when I could no longer work, or have purpose in life; something that is so important so we do not spiral into decline.

Early-on I reached out to the Alzheimer’s Association hoping I could volunteer my time in a meaningful way. However, it transpired that no one was willing to trust me to do any job I really wanted; they were only prepared to let me do simple jobs that I disliked. Eventually they placed me on a committee where I have had lots of input and a huge impact on others’ lives.

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Around the same time the Alzheimer’s Association reached out to me to work in a new group called ESAG (Early Stage Advisory Group). It was a good start to my advocacy, but I soon realized so much more needed to be done, that there was a lot not being accomplished. In the mean time I started to do my own advocacy work.

Before my term with AA came to an end I applied for a position with the National ESAG based in Chicago, but I was not accepted. Part of the issue, I feel, was that I was too vocal. However, I continued my advocacy by being invited on radio and television shows, and had many articles published in papers and online.

Even though I was not on the ESAG team I made sure my voice was heard at the National Alzheimer’s Association by making friends with some very high-level people. My strategy was to connect with as many people as possible who were in a position to bring about change. I did not want to deal with the people who were not able to make the big decisions. It’s not that I did not believe in those people but I have a limited amount of time left and I need to make it as productive as possible.

I started speaking regularly at NAPA and making connections with the committee members. By this time I had reapplied for the Alzheimer’s Association National Early Stage Advisor, and this time I was accepted.

I started to reach out to others with dementia and began mentoring them, teaching them what to do, and before long they started to have a voice, and realized they did not have to depend on their care partners. I was lighting fires under them and putting ideas in their heads and they made them successful, and then started teaching others and it is continuing. Many of these people are now doing great things, you would be amazed.

Let me give you two examples. Most recently an organization called Dementia Alliance International was formed. This is a group of people who all have dementia and are looking to become the voice for people like you and me. Another group has been set up by a friend of mine. This is a group of dementia mentors from all around the world who offer online mentoring to the newly diagnosed, which is ideal because it can take a long time for us to understand things, and at times we can feel lost. The site’s popularity is growing quickly.

Both of these groups do not allow the care partners to be involved because they always end up taking control of things and we want the voice of those with the disease.

I have also worked hard and pushed for a plan in my state. After it was approved by the governor I used every angle to get on the committee as they were going to need help to make changes, and create the procedures and policies that would impact others with dementia including their families. I was appointed by the governor, which was really good, but I was afraid that I may let others down on this important mission. I made use of the connections I had so I was able to be as productive as possible.

At first I found it challenging dealing with some people on this committee because they are so smart and I can only process things very slowly, so by the time I had understood what was said they had moved on to the next topic. I quickly realized I had to find a new way of communicating. So I started emailing them after the meetings to share my thoughts and even though my writing skills are poor everyone adapted and made allowances for me and I soon became a key contributor. d.

It is also important to remember that if you are in a role such as this you must remove yourself if you cannot do justice for those you are trying to serve. I know I may be making this sound easy but it really was not. When I started doing my advocacy work I was so overwhelmed. I could barely keep up with what I was doing and became very depressed. People around me kept telling me to stop and slow down, but I ignored them and kept pushing harder and harder. It took me many months to overcome those difficulties, but today I can handle almost anything.

I have now become an ambassador for AA, which means I meet with my local congressman in order to bring about more dementia awareness. I have made many requests of him and he has supported them all. Most recently he has signed on to things like sending a letter to the House Appropriators for an additional 200 million dollars, and The Alzheimer’s Accountability Act H.R. 4351. All these things are to help boost the money needed for research and more dementia awareness, which is badly needed and you can help with that also.

Sometimes you need to think outside the box. On two occasions I was able to get my congressman to read a short speech to Congress, and he even helped me to add the first ever letter to the Congressional Record requesting funding. This was shared with every Senator, Congressman, as well as government employees. This has become a part of history.

All it takes is the will to bring about change. There is no one better that can speak up for this cause then you because you are the experts in what you are dealing with. Your voice matters so much more then you may think. Today I am on many different advisory boards and regularly communicate with leaders of the G7 World Dementia Council. I have a direct connection to the chair’s private secretary. I have even written a book about my experience living with AD, pushing through obstacles until it was published as an e-book, and then printed.

Don’t ever let people tell you cannot do something. Find a way around those people. Your will and passion is so much stronger and you can make these contributions if you decide to. It is all up to you. We can do anything at our own speed.

Working as an advocate was the best thing I could have done. My mind has improved in so many ways and I continue to beat most odds. I know others who have benefited in the same way because of their advocacy work. I know I will not beat this disease, but I am not going down without a fight. So if there is one thing to take away from all this it is to find a new purpose in life, because this is a new road with many twists and turns. Don’t give up. Live your life to the fullest.


Dementia: Mental Activity Delays Onset; Accelerates & Compresses the Progression

Dr. WilsonBy Robert S. Wilson, PhD, Rush University Medical Center; Neurology®, the medical journal of the American Academy of Neurology, September 1, 2010

New research shows that mentally stimulating activities such as crossword puzzles, reading and listening to the radio may, at first, slow the decline of thinking skills but speed up dementia later in old age.

“Our results suggest that the benefit of delaying the initial signs of cognitive decline may come at the cost of more rapid dementia progression later on, but the question is why does this happen?” Dr. Wilson.

According to Wilson, mentally stimulating activities may somehow enhance the brain’s ability to function relatively normally despite the buildup of lesions in the brain associated with dementia. However, once they are diagnosed with dementia, people who have a more mentally active lifestyle are likely to have more brain changes related to dementia compared to those without a lot of mental activity. As a result, those with more mentally active lifestyles may experience a faster rate of decline once dementia begins. Continue reading

Wilson noted that mental activities compress the time period that a person spends with dementia, delaying its start and then speeding up its progress. “This reduces the overall amount of time that a person may suffer from dementia,” he said.

For the study, researchers evaluated the mental activities of 1,157 people age 65 or older who did not have dementia at the start of the nearly 12-year study. People answered questions about how often they participated in mental activities such as listening to the radio, watching television, reading, playing games and going to a museum; for this five-point cognitive activity scale, the more points scored, the more often people participated in mentally stimulating exercises.

During the next six years, the study found that the rate of cognitive decline in people without cognitive impairment was reduced by 52 percent for each point on the cognitive activity scale. For people with Alzheimer’s disease, the average rate of decline per year increased by 42 percent for each point on the cognitive activity scale.

The study was supported by the National Institute on Aging & the National Institute of Environmental Health Sciences.

Music Benefits Your Brain

Brains Benefit from MusicWhen you listen to music, multiple areas of your brain become engaged and active. But when you actually play an instrument, that activity becomes more like a full-body brain workout. What’s going on? Anita Collins explains the fireworks that go off in musicians’ brains when they play, and examines some of the long-term positive effects of this mental workout.  Click the graphic to see an explanatory video.


By Richard Powers: Richard has been teaching historic and contemporary social Senior_dancesdance for 40 years. He leads workshops around the world and is currently a full-time instructor at Stanford University’s Dance Division.

For centuries, dance manuals and other writings have lauded the health benefits of dancing, usually as physical exercise. More recently we’ve seen research on further health benefits of dancing, such as stress reduction and increased serotonin level, with its sense of well-being. More recently we’ve heard of another benefit: Frequent dancing apparently makes us smarter.

A major study added to the growing evidence that stimulating one’s mind by dancing can ward off Alzheimer’s disease and other dementia, much as physical exercise can keep the body fit. Dancing also increases cognitive acuity at all ages.

You may have heard about the New England Journal of Medicine report on the effects of recreational activities on mental acuity in aging. Here it is in a nutshell:

The 21-year study of senior citizens, 75 and older, was led by the Albert Einstein College of Medicine in New York City, funded by the National Institute on Aging, and published in the New England Journal of Medicine. Their method for objectively measuring mental acuity in aging was to monitor rates of dementia, including Alzheimer’s disease.

The study wanted to see if any physical or cognitive recreational activities influenced mental acuity and discovered that some activities had a significant beneficial effect while others had none.
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Cognitive activities such as reading books, writing for pleasure, doing crossword puzzles, playing cards and playing musical instruments were studied; as were physical activities like playing tennis or golf, swimming, bicycling, dancing, walking for exercise and doing housework.

One of the surprises of the study was that almost none of the physical activities appeared to offer any protection against dementia. There can be cardiovascular benefits of course, but the focus of this study was the mind. There was one important exception: the only physical activity to offer protection against dementia was frequent dancing:

Reading – 35% reduced risk of dementia
Bicycling and swimming – 0%
Doing crossword puzzles at least four days a week – 47%
Playing golf – 0%
Dancing frequently – 76%, the greatest risk reduction of any activity studied, cognitive or physical.

What could cause these significant cognitive benefits? Neurologist Dr. Robert Katzman proposed these persons are more resistant to the effects of dementia as a result of having greater cognitive reserve and increased complexity of neuronal synapses. Like education, participation in mentally engaging activities lowers the risk of dementia by improving these neural qualities.

As Harvard Medical School psychiatrist Dr. Joseph Coyle explains in an accompanying commentary: “The cerebral cortex and hippocampus, which are critical to these activities, are remarkably plastic, and they rewire themselves based upon their use.”

Our brain constantly rewires its neural pathways, as needed. If it doesn’t need to, then it won’t.

When brain cells die and synapses weaken with aging, our nouns go first, like names of people, because there’s only one neural pathway connecting to that stored information. If the single neural connection to that name fades, we lose access to it. As people age, some of them learn to parallel process, to come up with synonyms to go around these roadblocks.

The key here is Dr. Katzman’s emphasis on the complexity of our neuronal synapses. More is better. Do whatever you can to create new neural paths. The opposite of this is taking the same old well-worn path over and over again, with habitual patterns of thinking and living. . . We need to keep as many of those paths active as we can, while also generating new paths, to maintain the complexity of our neuronal connections. In other words: Intelligence — use it or lose it.

We immediately ask two questions: 1) Why is dancing better than other activities for improving mental capabilities? 2) Does this mean all kinds of dancing, or is one kind of dancing better than another?

. . .The essence of intelligence is making decisions. The best advice, when it comes to improving your mental acuity, is to involve yourself in activities that require split-second rapid-fire decision-making, as opposed to rote memory (retracing the same well-worn paths), or just working on your physical style.

One way to do that is to learn something new. Not just dancing, but anything new. Don’t worry about the probability that you’ll never use it in the future. Take a class to challenge your mind. It will stimulate the connectivity of your brain by generating the need for new pathways. Difficult classes are better for you, as they will create a greater need for new neural pathways.

Then take a dance class, which can be even more effective. Dancing integrates several brain functions at once — kinesthetic, rational, musical, and emotional — further increasing your neural connectivity.

In social dancing, the Follow role automatically gains a benefit, by making hundreds of split-second decisions as to what to do next, sometimes unconsciously so. As I mentioned on this page, women don’t “follow”, they interpret the signals their partners are giving them, and this requires intelligence and decision-making, which is active, not passive.

This benefit is greatly enhanced by dancing with different partners, not always with the same fellow. With different dance partners, you have to adjust much more and be aware of more variables. This is great for staying smarter longer.

The study made another important suggestion: do it often. Seniors who did crossword puzzles four days a week had a measurably lower risk of dementia than those who did the puzzles once a week. If you can’t take classes or go out dancing four times a week, then dance as much as you can. More is better. And do it now, the sooner the better. It’s essential to start building your cognitive reserve now. Some day you’ll need as many of those stepping-stones across the creek as possible. Don’t wait — start building them now.

Robin Williams & Lewy Body Dementia

By Lewy Body Dementia Association:Robin Williams

ATLANTA (November 10, 2014) — The recent release of the autopsy and coroner reports on Robin Williams has raised questions about his state of health at the time of his tragic suicide earlier this year.  Some news reports indicate that Mr. Williams had dementia at the time of his death.

The Lewy Body Dementia Association (LBDA) provides information about what can – and cannot – be concluded from these reports.  The autopsy indicated the presence of ‘diffuse Lewy body dementia’ in the brain of Mr. Williams. This is more commonly called ‘diffuse Lewy body disease’ which reflects the biological disease process in the brain.

“The use of the term dementia in the neuropathology report should not be inferred to mean that dementia was observed during life,” warns Dennis Dickson, M.D., Mayo Clinic in Jacksonville, Fla. and member of the LBDA Scientific Advisory Council.

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Lewy bodies are mis-folded protein deposits found in the brains of individuals with several different disorders including Parkinson’s disease (PD) and dementia with Lewy bodies (DLB).

According to his wife, Robin Williams was battling “the early stages of Parkinson’s disease” before his death. In early PD, Lewy bodies are generally limited in distribution, but in DLB, the Lewy bodies are spread widely throughout the brain, as was the case with Robin Williams.

Dr. Dickson, who has reviewed the autopsy and coroner’s report, further states, “Mr. Williams was given a clinical diagnosis of PD and treated for motor symptoms. The report confirms he experienced depression, anxiety and paranoia, which may occur in either Parkinson’s disease or dementia with Lewy bodies.”

Both Parkinson’s disease with dementia and DLB are considered Lewy body dementias because of the presence of Lewy bodies in the brain. Collectively, Lewy body dementias are the second most common form of dementia and affect an estimated 1.4 million Americans.

To receive a diagnosis of dementia with Lewy bodies, a person must have significant problems with thinking and memory that interfere with everyday life. There is no mention in the media or in the autopsy report that Robin Williams exhibited these symptoms.  It is not uncommon, however, for early signs of dementia to go undetected. The Mini Mental Status Exam – a common screening test for cognitive impairment and dementia used by many physicians – is not able to detect cognitive impairment in early DLB.

“Further research is needed to better understand why some individuals with diffuse Lewy body disease do not show symptoms of dementia,” according to Dr. Dickson. “In particular, we need to learn how dementia with Lewy bodies differs clinically from Parkinson’s disease when they both share the same underlying disease process.”

DLB and PD share many symptoms, but have different patterns of onset, progression and symptom severity. The most prominent and problematic clinical symptoms in early PD are related to movement, while in DLB they are more likely to be cognitive and psychiatric. However, over the course of both disorders, the symptoms become more and more alike.

A Plea for Better End of Life Care

Dr. Atul Gawande, bestselling author of Being Mortal: Medicine and What Matters in the End.
In order to provide better medical care to the seriously ill, physicians must ask patients about their goals of care and end of life wishes.

Gawande, a general surgeon at Brigham and Women’s Hospital in Boston, addressed hundreds of medical students and physicians at the University of Chicago Medical School… He asked that they listen to patients’ concerns and recognize that prolonging life may not always be the best medical option for the dying.

“We have failed to recognize in medicine and society that people have priorities besides just living longer, that they have aims and goals,” he said. “The most effective way to find peoples’ priorities is to ask. But we don’t ask.” In the hospital setting, the physician often speaks more than the patient, Gawande added.

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Some terminally ill patients wish to remain mobile or mentally competent enough to walk their dog or eat at a favorite restaurant; others wish for enough time to say goodbye to loved ones.

“At the end of life, people want to still participate, have a role and make memories,” he said. Because aggressive, often unnecessary, treatments can stymie mobility and cognitive ability, Gawande recommends that doctors familiarize themselves with the benefits of hospice and palliative medicine.

We have failed to recognize in medicine and society that people have priorities besides just living longer, that they have aims and goals.

Gawande urged physicians and nurses to ask their patients if they truly understand the nature of their disease. Only with this understanding can a physician begin to provide guidance, he added. Patients and families would be more comfortable enrolling in earlier palliative treatments if they are told about the benefits soon after diagnosis.

Throughout his new book, Being Mortal, Gawande tackles the negative impacts of some relatively new life-prolonging treatments on the seriously ill.

“I never expected that among the most meaningful experiences I’d have as a doctor — and, really, as a human being — would come from helping others deal with what medicine cannot do as well as what it can,” he writes.

Unfortunately, many medical students avoid pursuing careers in geriatrics – care for the aged and ill – often due to the lower pay and the difficult, often emotional, nature of the work.