Safety in the Comfort of Home:

M Trepicchio

By Michael Trepicchio, Owner of Aging In The Comfort Of Home, a home modifications company dedicated to doing home modifications/remodeling so that seniors, people with dementia and people with disabilities are safe in their own home.

 

Home Safety is Important for seniors, especially those with dementia. It makes it safer for the senior or person with dementia but is also less stressful for the caregiver, and family members.
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General Safety Tips:

  • Display emergency numbers and home address near all telephones so it will be easier for them to remember.
  • The use of an answering machine has several benefits — A person with dementia often may be unable to take messages or could become victims of telephone scams.
  • Make sure that smoke alarms and carbon monoxide detectors are near the kitchen and all sleeping areas, and properly functioning.
  • Make sure that locks on all outside doors and windows are secure.
  • Keep a spare house key in case the person with dementia locks you out of the house.
  • If it is absolutely necessary to use extension cords make sure they are secure to avoid tripping.
  • All rooms should have adequate lighting – poor lighting is a major cause of falls
  • If the home has multiple levels consider the following: Install light switches at the top and the bottom of stairs; install handrails on both sides of the staircase and if the person has mobility issues consider a chair lift.
  • If the person is in a wheel chair make sure all doorways and entrances are wide enough or widened to accommodate.
  • Suggest a medication delivery system – such as daily pill dispenser – so that they don’t over or under medicate due to forgetfulness. The remainder should be safely stored.
  • Clutter should be eliminated especially where people walk
  • Scatter or area rugs should be secure or removed to lessen the chance of slipping and falling

Outside the House

  • Make sure entrance steps are sturdy and secure and if possible differentiate edge of step.
  • Consider installing a ramp with handrails as an alternative to the steps.
  • Walkways should not have cracks or be uneven, and should have no obstructions.
  • Place a small bench or table by the entry door to hold parcels while unlocking the door.
  • As with the inside make sure outside lighting is adequate. Also consider motion sensors that turn on lights automatically.

Kitchen

  • Consider installing safety knobs and an automatic shut-off switch on the stove.

Bedroom

  • Once again adequate lighting is a must, also consider use of a night-light.
  • Monitoring devices (like those used for infants) to alert you to any sounds indicating a fall or other need for help. This also is an effective device for bathrooms.
  • If they have any trouble with walking or stability, consider transfer or mobility aids such as walkers.

Bathroom

  • Remove the lock from the bathroom door to prevent them from getting locked inside.
  • Bathroom floor should be as slip resistant as possible. Ceramic floors plus water can spell disaster.
  • Consider a comfort height toilet and a raised toilet seat with handrails.
  • Permanent (not suction or towel racks) grab bars should be installed in the tub/shower and near the toilet
  • If the home has a shower consider a shower stool and a hand-held showerhead to make bathing easier.
  • Make sure the hot water heater is set at 120 degrees Fahrenheit to avoid scalding tap water.
  • Once again adequate lighting is a must, also consider use of a night-light.
  • Garage/Shed/Basement
  • For people with dementia you should lock access to all garages and basements if possible.
  • Secure and lock all motor vehicles if they are at the house to reduce the possibility that the person with dementia or a senior with impaired ability will think about leaving.

For more information contact Michael Trepicchio: mtrepicchio@aginginthecomfortofhomenj.com or call 732-788-4746

 

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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.”
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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)

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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.

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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.
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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.
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DANCING MAKES YOU SMARTER

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:
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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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A Plea for Better End of Life Care

Dr. Atul Gawande, bestselling author of Being Mortal: Medicine and What Matters in the End.
Atul-Gawande
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.

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Alzheimer’s Claims One Half of Click & Clack

Click & ClackOn Monday, November 3rd, Tom Magliozzi, one half of Car Talk’s Click and Clack, succumbed to complications due to Alzheimer’s. Tom and his brother Ray were experts in soul-cleansing, captivating humor. In honor of what they have brought us for over 35 years, we dedicate this “Featured Expert” space to the joy they brought.  Click on their photo and enjoy.

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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.

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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.

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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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