Staying One Step Ahead of the Mortician

Martin Bayneby: Martin Bayne a journalist, Buddhist monk, MIT graduate, and well-known advocate for the aging. In the nineties, at the peak of his professional career and personal eldercare advocacy, Bayne was diagnosed with Parkinson’s Disease. For the past ten years he has lived in an assisted living facility.

Prior to my diagnosis of Young Onset Parkinson’s Disease in 1994, just before my 44th birthday, the concepts of morbidity and mortality were statistical anomalies; ignored, for the most part, like unwanted relatives. That would change, however, in ways I could not fathom.

Three weeks ago I was taken by ambulance from the Assisted Living Facility (ALF) I now call home, to an acute care hospital ER where I presented with a 103o fever, delirium and difficulty breathing. After eight hours of poking, prodding, blood work and X-rays, I was diagnosed with pneumonia and exacerbation of congestive heart failure. I waited for a bed on an ICU step-down unit to open, and three hours later was admitted to the sixth-floor unit, where a broad-spectrum antibiotic (the first of sixteen IVs) was started in my left antecubital vein.

A week later and pneumonia-free, I was transferred to a Skilled Nursing Facility for rehab – a move mandated by my ALF. Finally, after two weeks of physical and occupational therapy, I returned home yesterday, closing the circle, and once again cheating the Grim Reaper.

After twelve years of life in an ALF, I’d like to report that going toe-to-toe with death has become just another fact of life. But it hasn’t. In fact, the older I get (now 64), the more I dig in with all the tenacity I can muster to stave off what I know is natural and inevitable.

Americans rarely talk openly about death — the hospice movement is trying to change that, but the chronology of genuine change is more likely to be measured in generations than years.

According to The National Hospice and Palliative Care Organization (NHPCO), the name “hospice” was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice—St. Christopher’s Hospice—in a residential suburb of London. Considered the model for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well.

I’ve witnessed a significant number of my fellow residents — in three ALFs, over a twelve year period — drop their bodies and move on. Some transitioned quickly, with no fanfare or goodbyes; often in their sleep, while still others appeared to slowly enter a deep and silent hibernation.

When possible, and the family deemed it appropriate, I would spend time with the dying resident, often holding their hand and reading from an inspirational book or web page (http://DynamicKindess.com) Other times I would merely sit quietly next to their bed, in meditation – never a “pity party,” just a proper Bon Voyage from a fellow human being.Holding Hands 300×195 Staying One Step Ahead of the Mortician

I was particularly moved by “Charles,” a man in his mid-nineties who sat by himself in the dining room, conversed with none of the other residents, and always wore the same faded-grey trousers and blue cardigan sweater. One day I walked over to his table after lunch and extended my hand. He starred at me for what seemed like an eternity. Then, slowly and cautiously he raised his hand to meet mine. When our hands touched, I was moved beyond words, and I watched as a smile spread across his face. After that day, at the end of every meal, I would make my way across the dining room to shake his hand. Neither spoke; but volumes could have been written about the change in each of our lives.

The grey trousers and cardigan sweater? He threw them away and began to wear colorful outfits – and one day walked into breakfast with a muted pink shirt and dark pink sweater. Something inside me said it was his last day on earth, and after his meal was finished, he broke tradition and walked over to my table, taking my hand in his. Tears were already streaming down my cheeks. “Don’t worry,” he said, a smile playing at the corners of his mouth. “Everything will be all right.” That night, Charles died, taking a part of me with him.

Will I have the grace and courage to look death in the eye and smile when it’s my time to pass?

Hard to say. But in the interim, there are hands to shake and lives to touch.

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In the End, It Is About Life

Salwitz 2by James Salwitz, MD, Oncologist: He has  been listed as a Top Doctor in U.S. News & World Report and Top Doctors: New York Metro Area.

The Institute of Medicine of the National Academies has released their long anticipated 500-page report, titled Dying in America – Improving Quality and Honoring Individual Preferences near the End of Life. This is a critical addition to the ongoing conversation about health care in the United States and makes observations and conclusions, which we need to consider and understand. They conclude, as has been said before, that we waste precious resource’s as we fail to give good end-of-life care, millions suffer needlessly, and that we can and must do much better; it is time we opened ourselves to the conversation and our obligation to one another.

The report is a remarkable achievement which, like other IOM reports, will be sited during debates, research and planning. They note that with the aging of our population our reluctance to address final planning is a crisis, which affects in disproportionate numbers, not only the elderly, but also any group receiving marginal healthcare. Paradoxically, in the most technologically advanced medical centers, the futile focus on treatment in terminal situations not only wastes dollars it wastes life and causes suffering. As the result of “knowledge gaps, structural problems and financial disincentives,” our poor and painful approach to end-of-life care is perhaps the most perverse result of our fragmented health system.

IOM emphasizes education in end-of-life choices and planning, perhaps starting with organ donation on teenage driver licenses, and continuing through all healthcare contact during a person’s life. Patients and families need to be engaged and educated to discuss and plan long before they are consumed actually fighting disease or making wrenching last minute decisions. To this end, American citizens, doctors and all health care providers need to learn the alternatives, treatment possibilities and confront the challenging topic of dying. While the IOM was encouraged by the expansion of the medical specialty of Palliative Care, they note that there will always be too many people near the end of their lives to be cared for by just a few specialists, rather there is the need for all doctors who serve patients with life threatening disease to be skilled in giving quality end-of-life counseling and care.

The report focus on “person-centered, family oriented End-of-Life Care” is to be applauded. Nonetheless, there will be those that will interpret the emphasis on “compassionate, affordable, sustainable” treatment as suggesting that the hidden agenda is to save dollars at the expense of lives. Such an analysis would corrupt the truth and miss the critical goal of empowering each individual to make decisions regarding how they wish to live their lives and what quality means to each of us. This is a matter of personal freedom; the opportunity and right to live, at every moment of life, as we desire, and to decide what medical care is right for each. Ignorance and confusion about realities and limits, especially in those with terminal disease, combined with a national discomfort about discussing death, results in many Americans losing the opportunity to make vital personal choices.

The present reality is that excessive, invasive medical treatment is often given without patients and families having the educated possibility of living their final days, weeks or months in comfort, at home, with dignity, held by the ones they love, while other patients languish without any care, in pain, alone in the cold and dark.

The end-of-life is not about being dead. It is a precious, irreplaceable, part of life. Our goal, our obligation, as a society and as individuals, must be to find peace, quality and love until our very end.

Perhaps, then, the title of this report should be: Honoring Life in America.

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In Pursuit of the Tipping Point

by: Laura Beck – developer of Eden at Home. Today, as Learning and Development Guide, she coordinates management of the Eden Alternative brand and packaging of the organization’s message in promotional and educational content. Laura also supports design of new and existing Eden Alternative curricula and educational products, coordinates and facilitates the Eden Alternative’s webinar-based education, and serves as a public speaker and an educator of designated educational offerings.
laura-beckLast week, someone asked me to clarify some things about our Dementia Beyond Drugs training that made me realize that there are still some misconceptions floating around out there regarding the vision behind it. I’d like to share some of my thoughts on this, while noting that Dr. Al Power, the award-winning author of the book by the same name, may have a few of his own. Continue reading

For some folks, the expression “dementia beyond drugs” is perceived as an all or nothing proposition. What the training really emphasizes is how to move beyond merely reacting to so-called “behaviors” and, instead, learn to identify and respond to the unmet needs that are likely their underlying cause. Gone unchecked, unmet needs lead to distress and subsequent medication use for those who live with dementia. Ultimately, then, the goal is to tackle the cause, not just treat the symptom.

Does this mean that all drugs are bad when it comes to supporting the needs of those who live with dementia? As the daughter of two parents who lived with two different forms of dementia, I can clearly say “no.” In both cases (Alzheimer’s disease with Dad, and Lewy Body dementia with Mom), optimization (not maximization) of pharmaceutical support was key to achieving balance.

Yet, we’ve all heard stories (and Dr. Power shares some eye-popping ones in his book) of lives compromised needlessly by a slew of unnecessary medications. Fortunately, this reality is becoming more of a mainstream, regulatory concern. CMS’ National Partnership to Improve Dementia Care in Nursing Homes, for example, has advocated for reducing the prescription of antipsychotic medications, limiting use to only those cases that involve “a valid, clinical indication and a systematic process to evaluate each individual’s need.”

Specialized training, like Dementia Beyond Drugs, is really the only way to reach the tipping point needed to effectively reduce the use of antipsychotic medications by those who live with dementia. Employee care partners require education that demonstrates practice-based, individualized approaches focused on improving overall well-being and facilitating growth and meaningful engagement. Dr. Power’s “Experiential Model” reminds us that when communication, as most of us know it, isn’t possible, the human spirit finds a way to make its needs known.

Our job, as fellow human beings, is to heed this call… to reject any recourse that attempts to silence it pharmaceutically and make every effort to eek out the message behind challenging reactions or “behaviors.” Doing so honors our common need to fulfill our sense of identity, security, connectedness, and autonomy, as well as our need to experience meaning, joy, and never-ending growth… whoever we may be.

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We Are A Long Way From An Alzheimer’s Cure

expertfrom Forbes.com 23 July 2014
By: Howard Gleckman – Resident Fellow at The Urban Institute; a member of the Board of Trustees, Suburban Hospital (Bethesda, MD) and co-chair of its Medical Quality Committee; member of the Board of The Jewish Council for the Aging of Greater Washington; senior advisor to Caring from a Distance, a non-profit that provides Web-based and telephone assistance to long-distance caregivers. A veteran journalist, Mr. Gleckman was senior correspondent in the D.C. bureau of Business Week, covering health and elder care, as well as tax and budget issues, for nearly 20 years. He was a 2003 National Magazine Award finalist for a series of Business Week articles entitled The Coming Revolution in Health Care. Mr. Gleckman is the author of Caring for Our Parents

 

Two take-aways from the recently concluded Alzheimer’s Association International Conference in Copenhagen: First, after years of research, we still know remarkably little about what causes dementia or how to prevent or delay it. Second, the dementia establishment, including the Alzheimer’s Association and the White House’s National Plan to Address Alzheimer’s Disease, is so focused on a cure that it pays too little attention to the immediate needs of those who already have dementia and those caring for them.

The conference was filled with academic papers based on small, preliminary studies. Researchers are testing every possible variable in older people’s lives to determine if it could be the key to dementia. And the results were all over the place.

The trick is to ignore the breathless accounts of this research that appeared in the popular media. There is no silver bullet. In fact, the conference made clear that we don’t even quite know what we are shooting at.

One paper found that mental activity could slow the onset of Alzheimer’s. Another concluded that moderate physical activity in middle age might help. Yet another reported that people over 90 with high blood pressure were less likely to suffer from dementia (older research found that hypertension might be a positive indicator). Another suggested that widowhood in old age might slow cognitive decline (I’m not even going there).

Note that all of these suggest environmental or behavioral responses. They largely ignore the complex genetic questions raised by dementia. Are some of us doomed by our genes to suffer from dementia? The best answer is, once again: maybe.

Importantly, three new studies showed that dementia rates may be slowing in the developed world. This research confirms some important earlier work that reached the same conclusion. The reasons for this are much less clear. It may be about better cardiovascular health or perhaps even better education. Researchers are also focusing on earlier detection. A raft of experimental drugs aimed at slowing the progression of dementia have turned into costly, high-profile flops. By now, most have been abandoned.

But the latest theory making the rounds is that perhaps they were administered too late. If only we could identify likely candidates for dementia even before they begin showing symptoms, these drugs—or others—might be more effective.

One reason for all this uncertainty is that dementia is actually many diseases. While Alzheimer’s has the highest profile, others are related to Parkinson’s Disease, stroke and other vascular diseases, and the like. Many diseases will likely require many different treatments.
But meanwhile, in the U.S. alone 5 million people already suffer from cognitive impairment and 10 million family members are struggling to care for them. At this conference, which brought together researchers from around the world, there was barely a mention of caregiving issues. It was mostly about big bucks medical research.

Nothing wrong with that research, though there is so much money to be made it seems the drug companies ought to be financing it themselves, and without taxpayer help.

In the meantime, let’s acknowledge the painful reality: We are making only slow, incremental progress in the war against Alzheimer’s and other dementias. We are far from prevention or cure. For now, we should increase our focus on living with dementia and caring for those with this condition.

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Enhancing Person-centered Home Care

JTBy Jennifer Tucker, Vice President, Homewatch CareGivers International

Home care is first and foremost about the people we serve, not just the illness or disability that the individual is currently experiencing.  Our principles are in complete alignment with national organizations like CCAL and The Eden Alternative, which is why our caregivers have always been trained in person-centered, relationship-based care.

“From the time it was founded, more than 34 years ago, Homewatch CareGivers has been focused on promoting independence, dignity and choice for elders and their families,” said Homewatch CareGivers International President Leann Reynolds.

For those of you who may not be familiar with the ten-principle philosophy of The Eden Alternative, it promotes person-directed care. This type of care is structured around the unique strengths, needs and desires of people who need home care. Non-medical home care can assist people who for a variety of reasons may not be capable of executing their basic daily activities, such as bathing or preparing food, and need help remaining safe from falls or other hazards in their home environment.

“Even someone’s home can feel like an institution,” said Eden Alternative Co-Founder and geriatrician Dr. Bill Thomas. “Person-directed care changes this by putting the individual first.”

Homewatch CareGivers is pleased to be partnering with The Eden Alternative to bring person-directed care to caregivers across the country through our blended-learning Certified Eden at Home Associate Training for the home care industry.

Our country is facing ever-escalating numbers of families who want to age in place.   We are committed to listening to “the voices and choices of consumers” who are seeking well-trained in-home caregivers and interactive e-learning tools to better engage with their loved ones and improve the quality of life for everyone in the family.

The Eden Alternative has expanded its reach across the full continuum of care to include the needs of those living at home, where “more than 80 percent of care services are now being provided,” stated Chris Perna, Eden Alternative’s CEO.

“We selected Homewatch CareGivers as a partner because we have aligned values and well-trained professionals. This partnership offers us an opportunity to improve quality of life for more families with elders receiving care at home,” Perna added.  Homewatch CareGivers is the first home care company to roll out a focused company-wide strategy to bring these proven principles and practices to elders living at home.   This means that the enriching care provided by Homewatch CareGivers will go beyond addressing the immediate needs of elder clients, to supporting the continued growth and development of the elders in their care

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Person-Centered Perspective in Senior Care

JP-ExpertJackie Pinkowitz, M.Ed., and Chair of the CCAL, discussed her experience with person-centered care with A Place for Mom, and writes about how utilizing a person-centered approach is changing the senior care industry.

Like many of you, I have been a loving family caregiver for four elder parents, each of whom had individual needs, which changed over time. I spent much time and energy seeking quality options across the spectrum of senior living: from independent living apartments, to assisted living communities, to special Alzheimer’s communities, and finally to long-term skilled nursing facilities.

As Chair of CCAL, I hope that you will adopt a person-centered perspective as you seek senior living options for yourself or your loved ones.
Such a perspective requires an understanding that person-centered care is a holistic approach that focuses on enhancing all the dimensions of one’s health and well-being, which includes:
•Physical health
•Intellectual being
•Social and emotional wellness
•Creative being
•Spiritual being

Person-centered living encompasses care, services and meaningful engagement that are planned according to residents’ personal preferences, values and goals. This approach honors each senior’s dignity, choice, self-determination and individuality, which enhances quality of life and quality of care for seniors.
What Person-Centered Care Means for Seniors
From the seniors’ perspective, this type of care includes the following principles and practices:
•“Nothing about me, without me.”
•I have the right to determine how best to meet my needs.
•My care should optimize my physical and psychosocial well-being.
•My care must be nurturing, empowering and respectful.
•It must include me, my family and care team in decision-making.

What Matters Most: Positive Emotional Connections and Experiences

When seniors offer their perspective on quality of care and services, they most often describe how the care or service was experienced by them. Although seniors would probably say, “It’s all about providing positive emotional connections and taking a new view of me,” I believe they are really saying something else. They are saying, “See me for the person I truly am. See me for all the things I believe in, care about, and love to do. Don’t diminish my personhood just because I need some assistance with activities of daily living.”
It’s all about relationships and valuing the uniqueness of each resident.

How Person-Centered Care Affects Memory Care

When applied in memory care settings, all of the above-mentioned values, relationships, experiences and practices are enhancing the lives of individuals with dementia and other cognitive issues.
How person-centered memory care enhances dementia patients’ lives, and how to create a person-centered memory care setting can be found on CCAL’s website.

Person-Center Care Slow to Evolve in the U.S.

In 2001, the Institute of Medicine’s (IOM) report titled “Crossing the Quality Chasm” called for a redesign of our nation’s healthcare system, and described healthcare in America as impersonal and fragmented. The IOM report stated that a critical element needed in the redesign was a shift to a person-centered approach moving away from the traditional clinician/disease centered one.

In the decade following the IOM report, however, little national progress had been made to shift to making person-centeredness the standard of healthcare and long-term services and supports (LTSS). The Affordable Care Act (ACA) of 2010 helps to reinforce the need for change by requiring that services funded by the Centers for Medicare and Medicaid Services be provided in a person-centered manner.

A growing body of empirical evidence indicates that person-centered practices are more pleasant to experience, help to optimize health and well-being outcomes, and result in higher satisfaction.
According to Jason A. Wolf, PhD, and Executive Director of the Beryl Institute, “The healthcare experience… is based on every interaction a patient and/or their family have on the care journey and is ultimately measured by the very perceptions those individuals have of their experience.”
Excerpted from: Dementia Care: The Quality Chasm, K. Love and J. Pinkowitz (eds). Falls Church, VA. National Dementia Initiative, CCAL

Seeking Person-Centered Living Communities

As you visit different communities, I encourage you to spend time at the community and see how comfortable you and your loved ones feel being there. Ask yourselves if you feel the following principles are being practiced:
•Every person is provided a choice, autonomy and independence, and is treated with dignity, respect and privacy.
•Services are provided in a respectful way that also includes their family and larger caregiving and support network.
•People have the right to determine their needs, decide how best to have those needs met, and to be provided a means to give feedback about the quality and nature of the services and supports.

Moving into a new community is a major transition for the prospective resident and your entire family, so I urge you to drop by the community at different times of the day and week. Chat informally with residents and staff. Are they friendly and positive about the community? Look for life enrichment within the community. Does it feel as if they are honoring the residents’ life experiences, choices and routines in the natural rhythms of daily living? These are the person-centered elements that contribute to residents’ and families’ sense of belonging and well-being.

Wishing you much success in seeking person-centered senior living!

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Using Touch to Foster Well-Being

by: Karen Love, Founder & Treasurer CCAL; Principal, Fit Interactive & Pathways to Care
ReikiTouch is one of the most basic elements of human development. Since ancient times and throughout the world, people have used touch as a healing technique. The word ‘touch’ is even used in our everyday language to convey a feeling. We say things like “that was so touching” to mean we are emotionally moved by something.

Therapeutic Touch is a term used to describe intentional and compassionate touch. It has the power to ease physical and emotional discomfort and increase feelings of calmness, relation, and a sense of well-being.

Therapeutic Touch uses different hand techniques depending on what part of the body is receiving it. Both hands are lightly and gently placed on various parts of the clothed body for five seconds or more so that the person can feel the warmth from the hands. Therapeutic Touch techniques are simple to learn and easy to use. The more practice one gets, the better their skills become.

Besides the physical benefits to ease stiffness, joint pain, and other physical discomforts, Therapeutic Touch can convey caring, affection, trust and an emotional closeness and connection that is especially important for people who have become socially isolated.

Reiki is a specialized type of healing touch. It is a natural method of hands-on healing that channels Universal life energy by the Reiki practitioner to the receiver’s body so their body can use the energy for healing and restoration of well-being. According to the American Hospital Association, 15% of American hospitals today offer Reiki as part of their services.

I participated in a research study funded under the Alzheimer’s Disease Supportive Services Program by the U.S. Administration on Aging that studied the use of Therapeutic Touch and Reiki by over 200 home care aides in the District of Columbia during 2011 to 2013. One of the findings from the study was the benefits experienced by the practitioners themselves. Applying Therapeutic Touch or Reiki instilled a sense of calming and well-being in them as well. (Click here for a pocket guide about Therapeutic Touch and Reiki.)

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A Soulful, Heart-Based Reinvention of Assisted Living

Martin Bayneby Martin Bayne: Martin has been an assisted living resident for more than 10 years, and credits many of his ideas to his experiences as a Zen Buddhist monk and an MIT scholar. His website is TheVoice0fAgingBoomers.com; his literary journal—showcasing authors ages 60 and older—can be found at TheFeatheredFlounder.com.

Imagine you are 70, your spouse has just died and your children have decided it’s no longer safe or prudent for you to live alone. It’s your worst nightmare—complete with memories of the insecurities and trepidation felt in the first days of school, but this time it’s an assisted living facility, and, like you, the other “kids” are in their 70s, 80s and 90s. For many assisted living residents, the first days and weeks are the most traumatic. Many arrive in a surreal haze; some just days after burying their spouse; others following years of steady losses to a chronic illness like Parkinson’s. And then there are the legions of poor souls with cognitive disorders, who neither understand why they’re sleeping in a different bed nor know who just served them breakfast. And every resident is susceptible to the ambient despair that comes with the recognition of their community’s unprecedented levels of dementia, disability, depression and death. Continue reading

Rethinking Assisted Living At age 52, I entered an assisted living facility because I had young-onset Parkinson’s disease. But my knowledge and experience of long-term care go beyond living in an assisted living facility. As the publisher from 1993 to 2001 of the website, MrLTC.com, I have had the opportunity to interview Hillary Clinton, Jimmy Carter, Clint Eastwood and a number of other prominent Americans about long-term care.

For many assisted living residents, the first days and weeks of residency are the most traumatic.

After nearly a decade as an assisted living resident, I decided it was time to create the next generation of assisted living communities. I developed a program called Therapeutic Assisted Living, which I believe will change the way Americans think about institutional aging. My vision of Therapeutic Assisted Living is made up of two immutable truths, eight principles and five interventions.

A New Vision: the two immutable truths are that aging and death are natural attributes of being human, and love and compassion are the most powerful forces in the universe. The eight principles of Therapeutic Assisted Living, which originated in my practice as a Zen Buddhist monk, are that with stillness, we lay the foundation; with courage, we move forward—despite our fear; with forgiveness, we discover true freedom; with insight, we accept the change of life’s seasons; with gratitude, we honor our ancestors; with tenderness, we turn the stream of com-passion within; with faith, we learn surrender; with mindfulness, we do just this thing, now.

The five interventions make up a set of instructions, or an operational guide, for a Therapeutic Assisted Living community. First, there should be a Welcoming Committee—each new resident should be greeted by a group of existing residents. The interchange is simple, yet the rewards are often profound for new residents. There should be a Peer Support Group, a weekly, residents-only meeting. This provides a safe, supportive environment for honest exchange between community members on myriad issues. This group is the heart of the community, and its objective—purposeful living—the soul. A Crisis Team, made up of residents, should be available to other residents around the clock. This team is composed of three or four residents who agree to be available at all times for any resident who asks for their help. A Crisis Team member is not a therapist, psychologist or professional healer, but simply some-one willing to listen, comfort and demonstrate compassion to a resident in trauma. To anyone who has ever suffered a panic attack at 3:00am, and just needed a kind and reassuring voice to walk them through the rough spots—not an often-ambivalent ambulance crew or 10 hours in an emergency room—this concept needs no explanation.

Community Volunteering is a key component as volunteering says to the world, “I am worthwhile; a fellow human being with something to offer, regardless of my age.”

A Peer Support Group is the heart of the community, and its objective—purposeful living—the soul.

And finally, there should be Legacy When a resident dies, the community should come together to honor and pay respect to one of their own as the fallen resident embarks on the Great Adventure. Therapeutic Assisted Living says “dying is completely safe,” and if all goes well, the residents can expect to be greeted by another Welcoming Committee, albeit one with a bit more spirit.

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Making My Blood Boil: Frontline Expose on Assisted Living

by: Larry Minnix, President & CEO LeadingAge

Larry Minnix.bmpIf you did not see the Frontline exposé about an assisted-living company, it is a must-see for boards of directors, senior management, and staff of our organizations. If you are like me, you will feel powerful, mixed emotions about the Frontline PBS episode. You will feel horrified about the human tragedy that is portrayed.

You will be angry because you know that many people watching — and beyond — will assume that all assisted living is similar to the Frontline depiction. You will feel defensive of good providers who do not deserve to be painted with the same brush that the company in question is painted. You will, initially, be angry with the media for doing a hatchet job that doesn’t portray balance. You also may have the impulse to blame policymakers and regulators for making the services program too complicated or too lax. You may even blame various associations for allowing bad actors to function in the service-delivery world. After all, nursing homes have been under this kind of microscope for years.

Who Is Responsible?

But, who is really responsible for such stories, and what do WE plan to do about it? Here is my take:

The corporate executives interviewed by Frontline blamed residents with Alzheimer’s disease for unpredictable behavior. They blamed staff for being human and making mistakes. They even blamed families for understanding the negotiated risk of putting a loved one in an assisted living facility instead of placement in the “dreaded nursing home.” They blamed everyone but themselves, except for issuing the now common “we’re not a perfect company” message too often used in similar situations of corporate scandal.

But, the thing that made my blood boil the most is that what happened to these residents should not happen to anyone! And no one should be treated the way that these employees were treated! The core failing of a company with multiple problems, violations of state regulations, and lawsuits is a corporate culture based on fundamentally poor values. Laced throughout all of the interviews by former employees and family members was a hidden value of greed over compassion and competence, covered by layers of sweet icing of the trappings of nice facilities.

The Achilles’ heel of assisted living is that those who are in it for the money know how to sell sizzle but offer very little steak. Long-term care leaders have, for years, fretted over this potential. Many of us have complained that assisted living is admitting and keeping residents that they can’t care for. These facilities play on the public psychology that families will gravitate to the nice wall sconces, winding staircases, secure gardens, and public-relations trained admissions staff who know that, as one investor-owned chain marketing person told a friend of mine, “if you get them to cry, you know they will buy.”

Assisted Living Has the Right Ideas

Assisted living is an important program in the buffet of options that should be made available to seniors and their families. It has all the right ideas:
•Familiar and homelike setting.
•A culture of hospitality.
•A program and environment that appeals to the interests and strengths of residents who have impairments.
•A supportive approach to families.
•Flexibility to design services around the needs and interests of residents.

Assisted living has also enjoyed a relatively regulation-free hand to prove that this sector can self-govern using market-based principles without heavy-handed government intervention. LeadingAge, and our colleague associations in collaboration with consumer groups, have worked over a decade to help define standards that could follow in overseeing assisted living at the local level.

Many states have recognized the need for additional standards and training for dementia care, including Illinois, Minnesota, Montana, New York, Oregon and Washington. National groups, such as the Center for Excellence in Assisted Living (CEAL), have been working on best practices in dementia care in assisted living.

Assisted living represents the chance to show that professional and sector self responsibility can be effective — a state of public trust that nursing homes, even with big improvements in quality, do not yet enjoy.

Let us hope that the Frontline exposé has not irreparably derailed that privilege. Unfortunately, regulation is often driven by bad actors who take advantage of the circumstances in which they find themselves. In this case, we cannot let that happen!

So here’s what we need to do…and stand for!

Assisted Living Providers: Make Sure Your House is in Order

First, we need to make sure our house is in order. Take the Frontline video and ask yourself these questions:
•What are our admissions and discharge policies and procedures?
•What are our staffing levels?
•What kind of training and development program do we have for direct-care people?
•What are our quality standards and how do we know we’re achieving them?
•To whom are we accountable for what we deliver, and how does the public know our values and results?

If you find yourself feeling or discussing the tension between filling beds and delivering good quality, you need to have a serious conversation with your board of directors and senior management staff. You should do this because Frontline has exposed that when greed trumps compassion, bad things happen and residents and many others get hurt.

Evaluate Your Culture

Second, evaluate your culture. Indicators of healthy cultures begin with staffing.

Yes, all of our research points to the fact that staffing is the best proxy for quality in nursing homes and assisted living. In fact, the most trusted and supported staff in your organization should be the direct-care people on the night shift between Saturday evening and Sunday morning. Here are some questions to ask:
•When was the last time you checked in with those people to see how things are going?
•When was the last time you made rounds on evenings and nights or weekends?
•Do you have staff satisfaction surveys as well as resident and family satisfaction surveys? Do you act on the results?
•Do you disclose those results to your board and to the public?
•Do you have a culture of ongoing learning opportunities in the arena of contemporary clinical care as well as the often difficult dementia care arena?

Quality-Improvement Programs

Third, do you have a continuous quality improvement program in place beyond the cosmetics of it? Any crafty manager can produce numbers. Not everyone knows how to produce quality and how to measure it.

In less-supervised settings like assisted living, continuous quality improvement is even more critical because of fewer leadership and supervisory people available everyday, 24/7. Does your continuous quality improvement culture include non-punitive, anonymous mechanisms to report incidents or negative dynamics?

Public Oversight

Fourth, are you active with policymakers, regulators, and consumer groups to make sure that the proper, transparent public oversight is in place. It is not sufficient to defend what we do, however good we may be.

We must go on offense about constantly improving standards that can be publicly disclosed. Are you advocating for policies in your state that assure disclosure about owners and access to them — even stockholders.

In the not-for-profit sector, ownership accountability is local and transparent. With publicly traded or privately owned organizations, the public often does not know who’s behind the curtain.

Are you advocating for mechanisms that oust ineffective leaders and management — and even governing boards and owners?

We have been working with the Centers for Medicare and Medicaid Services (CMS) on how to deal with chronically bad performing nursing homes. The long-standing tradition has been to punish them, fine the owners, or close them down.

In recent years, we have suggested that punishing residents, families, and employees by closing down a bad actor is punishing the wrong people. Instead, we believe that managers and owners should be relieved of their responsibilities and replaced with competent and compassionate governance and leadership.

You see, the Frontline exposé was not generated by the fault of the disease, the residents and families who cope with it, the employees who try to deliver care in a high-pressure situation, or nosy media or hungry lawyers. No, the Frontline exposé results from a failure of leadership. And, it is our responsibility to advocate for corporate structures that are driven first by quality, which should result in business success whether you are a not-for-profit or a for-profit provider.

In the next few days, the Frontline story will develop broader public-relations legs — or not. It could result in the next OBRA 87 — or the flames could die down quickly. In either case, we cannot treat the Frontline exposé as a temporary public-relations crisis, because we all know that assisted living is an accident waiting to happen if we do not take responsibility aggressively for quality and what should happen to people who don’t produce it.

No one should be subjected to what we saw on Frontline. Quality should be an automatic public expectation. Let’s do something about it. Organizations like the one in the Frontline episode make my blood boil — and they should make your blood boil as well!

But, if we don’t address the underlying issues involved, we will have no one to blame but ourselves

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Music and Memory

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Dan Cohen, MSW, is the founding Executive Director of Music & Memory. He combines an extensive background in high tech training, corporate sales and software applications with social work, specializing in vocational rehabilitation and community service organizing. A former Consultant/Trainer for the U.S. Department of Education, he helped colleges, universities and communities nationwide to apply best practices in community service learning programs.

No one wants to end up alone and isolated in a nursing home. It’s hard enough to lose someone you love to Alzheimer’s or other forms of dementia. It’s terrifying to think you could end up there yourself, someday.

But there’s reason to hope for a better life as we age. At Music & Memory, we help elders in care facilities suffering from a wide range of cognitive and physical challenges find renewed meaning and connection in their lives through the gift of personalized music.

Beloved Music Can Renew Lives Lost to Dementia. Our approach is simple, elegant and effective: We train elder care professionals how to set up personalized music playlists, delivered on iPods and other digital devices, for those in their care. These musical favorites tap deep memories not lost to dementia and can bring residents and clients back to life, enabling them to feel like themselves again, to converse, socialize and stay present.

Music & Memory’s work is rooted in extensive neuroscience research. The results can be nothing short of miraculous.

CLICK HERE to meet Henry, who suffered from dementia for a decade and barely said a word to anyone—until Music & Memory set up an iPod program at his nursing home:

The Therapeutic Benefits of Personalized Music

Henry’s remarkable re-awakening is not unique. In more than 140 Certified Music & Memory Care Facilities throughout the U.S. and Canada, we’ve helped thousands of residents struggling from dementia and other chronic cognitive and physical impairments reconnect with family, friends and caregivers through our personalized digital music program.

Our ongoing research and evaluation of Music & Memory’s work in elder care facilities shows consistent results:
Residents are happier and more social.
Relationships among staff, residents and family deepen.
Everyone benefits from a calmer, more supportive social environment.
Staff regain valuable time previously lost to behavior management issues.

There is growing evidence that a personalized music program gives professionals one more tool in their effort to reduce reliance on anti-psychotic medications.

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