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Popular Topicsalzhe Alzheimers Amanda Kaestner assisted living cancer Catholic Health CCAL chemo chemo-therapy Debra Wood dement dementia Gleckman Jackie Pinkowitz Julie Trocchio Karen Love Kate Swaffer Lisa Abeyta Martin Bayne Penny Cook person-centered person-centered care person-centered environment person-centered living person-centered training pet therapy Reiki Semantic Dementia therapeutic touch
By: Amanda Kaestner Having grown up with a mother who was an RN for both in-home and traditional nursing homes, she’s had an appreciation for the well-being of today’s seniors by volunteering at VA hospitals and attending veteran events in her town.
If you’re considering a nursing home or an assisted living agency for a beloved senior, selecting one is an arduous process. Researching, locating, making unannounced visits to, and choosing the absolute best nursing home or reputable at-home service is neither simple nor easy. Although both have benefits that make them viable options, it’s critically important to do your due diligence before deciding.
Traditional Assisted Homes
The reality is – no one wants to move to a nursing home; no one dreams of it, hopes for it, or is happy about it if the time comes. Seniors want to continue growing older with dignity, respect, and an ability to make choices. Nursing homes don’t often provide the opportunity for these seemingly-simple standards of living. It’s not that the facilities don’t mean to take away a resident’s rights, self-esteem, confidence, feeling of safety, or joy – it just often happens as a result of the facilities being understaffed and/or staffed with minimum wage aides who don’t really want to be there either. If you take a moment to peruse Medicare’s long list of a resident’s rights in a nursing home (and what should be done if those rights are violated) you might wonder why it’s necessary to list all these basic-human privileges. You would hope that being talked to kindly, getting warm meals, and not being physically neglected or emotionally hurt would never be commonplace at a facility focused on caring for seniors; but, that is not always the reality. Fortunately, the movement across America has been toward a person-centered care philosophy where nursing home residents can bathe, eat, sleep, and enjoy their life in sync with their own particular life’s rhythm and not by some rigid, inflexible schedule set forth by a facility’s director.
Not every resident is the same, especially for seniors coping with mental health issues like Alzheimer’s or Dementia. Nursing conferences and culture change workshops across America are being held to teach staff how to instill the patient-centered care mission and create an environment where residents direct their own lives and make their own decisions. More specialty assisted living facilities are doing things different than what was done in the past in order to personalize the living experience for each and every resident. According to the Health Care Management Group, more of these types of full-time care facilities offer more than traditional nursing homes and are capable of servicing their residents with rehabilitation after injuries or to control their pain management, they offer speech therapy and stimulating activities to help with memory care. Activities are optional and the area on these properties is bright and spacious allowing residents to wander safely within a beautiful natural setting. More facilities are going the extra mile to ensure maximum comfort for their residents to give them more of living experience rather than feeling cared for
In-Home Living Services
With this choice, your loved one lives in the comfort, privacy, and security of his/her (or your) family home and the professional healthcare workers and caregivers come to the home as often as you schedule the visits. Depending on the medical needs and challenges of your loved one, this option truly provides the absolute best scenario for an individual if you and your other family members are able to physically and emotionally embrace the roles of being caregivers yourselves – even alongside a 24/7 caregiver you may hire. Having the healthcare providers come to your home and making a few physical adjustments to your property may be all you need to enable your loved one to remain at home. In a 2013 Forbes article, making small changes in the living space like adding a ramp or railings, removing throw rugs, or installing shower bars may be all you need to do to “keep them [seniors] out of nursing facilities for months or even years” or ideally – indefinitely so there’s never a goodbye to a dreaded nursing home.
Finding the right facility or caregiver doesn’t have to be something to worry about or be afraid of. Accepting care should never be taken as a reflection of a person’s inner strength and with the options that are out there today, there are many dignified routes to go about assisted living whether in-home or at a facility. Remember, just because someone is living doesn’t really mean they’re alive and every human being has the right to enjoy their life at any age. So explore your options and don’t settle for anything less than what best fits the medical and overall comfort needed.
from 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.
Not all Dementias are due to Alzheimer’s, nor do they reveal themselves in the same way. CLICK ON THE TEXT BELOW TO VIEW KATE’S VIDEO BLOG.
My name is Kate Swaffer, and I live in South Australia, Australia. This is my true story about being diagnosed with a younger onset dementia, probably Semantic Dementia. It is a hideous disease that is terminal, debilitating and challenging to live with.
by Lisa Abeyta: Founder, CEO APPCityLife Inc.
Yesterday afternoon, I had the privilege of spending a little bit of time with my dad, who is in the advanced stages of Alzheimer’s.
My parents have two dogs in their home, one of whom, Molly, is my father’s constant companion. More than once, I’ve watched him coo and talk to Molly even as his ability to form sentences and find the words he needs to communicate has deteriorated.
When my father and I arrived at my home yesterday to give my mom an hour to run some errands, our own family dog, Roscoe, greeted him at the door. For the next hour, my father petted and talked to Roscoe. Not wanting to lose the memory of the moment, I filmed a few moments of his interaction with our dog, amazed at the clarity of my father’s words.
By 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
By 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.
I now share a table in our dining room with a 99-year old woman we’ll call “M”.
When I met M for the first time – yesterday evening at dinner – I cried uncontrollably for a good half-hour. In retrospect, I realize that my tears were the first shed since my mother died last month. The last four weeks I’ve been wondering when the grief would finally hit . . . and yesterday was that day.
I suspect it’s also because M has an uncanny resemblance to my mom: sunken cheeks, translucent skin, and the other myriad realities of old age – making her even more precious.
Today at dinner, I found myself again in tears – only the second time in 4 years I can remember shedding tears in the dining room. This time the sluice gates opened when M mentioned her dog, Cowboy, and how desperately she missed him, “He’s slept with me every night for eight years,” she said. I asked her to describe the dog and I then realized the dog is now being watched over by a member of the staff, here at my facility. In fact, I remember seeing the dog just yesterday – brought in by the very same staff member – who it turns out is M’s granddaughter! [I promised M I would look into it tomorrow].
But M said something else today that triggered a small epiphany. You see, “ambient despair,” a term I coined to describe the phenomenon in which residents constantly subjected to abnormally high rates of dementia, death, depression and disability, “fail” quicker than their counterparts who receive the majority of their care in the community and at home.
Yet I’ve always felt that something was missing from the equation. And tonight, as I bit into a crab cake, and M finished talking about Cowboy, she said, “The trouble with being this old is that everyone tells you what to do . . .as if you were a child.” That’s when the lights came on. The inconsistent, manipulative policies of both staff and administration in any top-down management system eventually trickle down to the residents.
Here’s an example: my facility has the ability to pump FM radio throughout the building, and every day they anesthetize the residents with the same, dreary, monotonous “golden oldies” station. All of which begs the question, “Did anyone ever ask the residents what they want to listen to?” (There’s a great little NPR affiliate station in Bethlehem, PA – just a stone’s throw from where I live.)
So, every day, at an arbitrary time slot – whether I’m talking to a friend, writing an essay or reading a magazine on the john, I can be absolutely certain I’ll hear those immortal words:
If you wanna’ be happy
For the rest of your life,
Never make a pretty woman your wife,
So from my personal point of view,
Get an ugly girl to marry you.
A pretty woman makes her husband look small
And very often causes his downfall.
As soon as he marries her
Then she starts to do
The things that will break his heart.
But if you make an ugly woman your wife,
You’ll be happy for the rest of your life,
An ugly woman cooks her meals on time,
She’ll always give you peace of mind.
Don’t let your friends say
You have no taste,
Go ahead and marry anyway,
Though her face is ugly,
Her eyes don’t match,
Take it from me she’s a better catch.
Saw your wife the other day.
Yeah, she’s ugly.
Yeah, she’s ugly but she sure can cook.
By: Victoria Orlando – Teacher, Artist, Care Partner, Volunteer and Person-centered Soul
I was thinking yesterday, just before listening to a USC webinar about their gerontology program, how the course of Alzheimer’s and other dementias can include as many years as childhood. Few parents would allow their children to live those years in a physical-medical model, depriving them of the psychological, emotional, social and spiritual dimensions of care, yet our culture tacitly endorses this for our elders. I was going to ask the staff from USC if they had begun developing a program for person-centered and creative dementia care, but the emphasis was on how they were developing technologies for elders, with technology being perhaps, a nice link between the old and the young. Respecting their approach, and realizing the program I am hoping to see will not be available next semester at USC, I continue to ask myself, how can we get mainstream education involved in providing compassionate awareness and career options for holistic dementia care?
As care partners, we can find courses from the University of Bradford, or sensitive training from David Sheard’s Dementia Care Matters in the UK, learn from Hogeway, the Eden Alternative, Planetree, MoMA, and many other programs that have led the way person-centered care, and follow the art, music, horticulture and movement therapists who have used their skills brilliantly to create new ways of creating expression for people living with dementia. But, I will not give up thinking how wonderful it would be if a higher learning institution would welcome a full program – not just courses – that specifically addresses dementia care and its many components, emphasizing, in addition to the science explaining any of the illnesses, the emotional, spiritual, social, expressive programs to support it, starting from home-care through residential settings. Cancer used to be such a frightening disease; some people would not even use the whole word, yet now attitudes have changed. Alzheimer’s and similar illnesses need more light, more exposure so they are not so feared. Once fear lifts, understanding and care expands. We might not have cures but we do have models of acceptance and profound compassion and healing inspiration and comfort.
Today, I discovered for the first time that the world-known Mind and Life Institute in Massachusetts dedicated “to building a scientific understanding to reduce suffering and promote well-being” – offers research workshops and up to $6,000 in funding to advance work on a particular project or idea. Creating a holistic curriculum for compassionate and comprehensive dementia care in many settings could fit their initiatives. To build such a program and to have a university or college that truly seeks to include and promote this program to lead the way would be fantastic – and beyond me! The authors of the wonderful white paper you sent me have such a depth of expertise and skills for more of what’s needed to do this. Do you know if creating a full course of study is something the experts are thinking about? (How to get a well-developed program reflecting the CCAL white paper, “The Quality Chasm”, into a school, I don’t know, but out of curiosity, I’ve written a friend and former dean from Rutgers to see how a school creates programs.)
They say, it is important to be nourished by your passion because even if others seem uninterested, a dream has its own life and will give you its energy for your next step. I have no titles or noted expertise in field of dementia, but I can see more in people than many, and it moves me along, just as it moves you and so many others who share this dedication. To offer students the opportunity to develop, create and help deliver holistic programs for people living with dementia as a meaningful career path would be so valuable in generating a life-giving culture change around such illnesses. Given the anticipated number of people diagnosed with dementia ahead of us, my hope is that we will be ready for it; with programs equal to the people they serve.
Jackie 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:
•Social and emotional wellness
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!
It’s rare for me to write a personal article for our newsletter but I want to share a recent experience I had with our health care system. A few weeks ago I started out my morning like many others by going for a run. Before I even took the first bounding step, I twisted my foot (I was looking up at the full moon and was taught once again that I can’t always do two things at once). Luckily I didn’t fall or one of you might have put an alarm on me. Not thinking anything of it, I continued on that run and only hours later did I realize my stupidity as my foot swelled and I became unable to bear weight on it. Normally I try not to access our health care system for myself because of my cynicism and stubbornness but when I couldn’t even walk, it was time. My son drove me to the nearest Urgent Care Center and even as I hobbled in I was dreading it. I thought the wait would be forever, I would just be a number, the doctor wouldn’t really care about me, etc. You know what? It ended up being the two most fun hours of my day. Really! Here’s why.
The first thing they did after asking my name is told me how long I would most likely be there. How respectful of them. Next they asked me if I prefer Penny or Miss Cook. Rarely do I get to make that choice. They even gave me the option of using a wheelchair or not. Not wanting to lose my independence there, I said no. After completing the required paperwork I sat down to wait. But then another pleasant surprise when someone came out to the waiting room and passed around a basket with a variety of snacks. And they left it there so we all had access to food at any time.
I was sure this couldn’t last when I was shown to a typical, sterile examination room but when the nurse came in and asked if she could take my blood pressure and pulse before she even got out the cuff, I knew these people were my kind of folk. It only got better from there. The doctor spent time with me and didn’t even laugh when I told him what I’d done. The x-ray technician asked what I did for a living and when I told him, we bonded over the fact that his first job in high school was in a nursing home. He told me how it totally changed what he thought of nursing homes because people were living vibrantly in small households with lots of choices. Hmm…that’s a little ironic. Come to find out he’s from my old stomping ground in Rochester, New York and worked at the iconic, Fairport Baptist Home, one of the pioneer homes of culture change.
As I got fitted just right for my crutches, I thanked everyone who I met that day. I told them what a pleasure it was to be treated as a person by people who obviously liked to do what they do and work where they work.
My son could only laugh as I gingerly navigated the sidewalk on crutches with a huge smile upon my face. We are changing this institutional world of health care, one small step at a time. If you have your own story about person-centered care, please share it with.
by: Karen Love, Founder & Treasurer CCAL; Principal, Fit Interactive & Pathways to Care
Touch 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.)