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The Beryl Institute invites members and guests to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, contact michelle.garrison@theberylinstitute.org.

 

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Finding the Right Fit for Mom: A Daughter's Journey

Posted By Chari Tager, Tuesday, September 6, 2016

This was the situation for my family in 2014:

My mother, Ruth, 82, was in a nursing home in Boynton Beach, Florida. She had moved there after starting to show signs of mild dementia and the beginnings of Parkinson's. My father, Edward, 85, who still lived in their home, visited her every single day, checking up on her care and bringing her meals… and love.

After a year of this routine, which followed several years during which Dad cared for Mom at home, my father was physically worn out. After much discussion, my father, my sisters and I agreed that he should scale back. He moved into a senior independent living residence in Boca Raton, a wonderful place with lots of people for him to interact with. He no longer had to come home to an empty house, he had lots of friends, the staff prepared meals the way he liked and, if he needed it, a car was available. He was so happy, and it felt good knowing he was so well taken care of.

With my father no longer able to keep an eagle eye on my mother, and my parents now in separate facilities 40 minutes apart, my sisters and I decided to see if we could move our mother into the nursing home attached to my father’s facility. Well, we found a place for her there… after waiting almost nine months. She moved in in December, but just a little over two months later, in February 2015, my father passed away unexpectedly.

After consulting with Mom, my sisters and I decided to move her back to New York, where we had grown up and where two of us live. It was a big decision—my parents had spent 27 years in Florida—but my mother was OK with it.

Of course before we could move her, we had to apply for New York State Medicaid. Even though my mother had Medicaid in Florida, the process of getting Medicaid in New York was long and arduous.

Still, the biggest challenge was to find the right place for Mom to live. Unlike Florida, which has lots of nursing homes to choose from, Manhattan has few options. Frankly, the pickings are slim and it was very hard to find a place that we liked and where we thought Mom would be comfortable.

At some point we learned about the Small Houses, the Green House™-based small-groups homes on the Westchester campus of The New Jewish Home. While Westchester is not as convenient for my family as Manhattan, we decided to visit and were so impressed. Of course, as with everything else associated with this transition, getting my mother into one of the three Small Houses was not straightforward. There was the predictable waiting list, which we put her on, and hoped for the best while we continued to expand our search to areas outside but near Manhattan.

After months of searching and of working with lawyers, doctors and bankers to get all of Mom’s paperwork in order, my sisters and I were becoming desperate. Almost panicked, I put in another call to the Admissions office at The New Jewish Home. As luck would have it, a space had become available.

My family was so relieved, but not just because we had finally found a home—a wonderful home—for Mom. We were relieved because there was simply no comparison between the other places we had visited and The New Jewish Home, both in terms of the way the staff treated us—their “customer service,” you might say—and the Small House philosophy. Everything about the experience was comforting and supportive and easy. Even the application was more user-friendly and less intimidating than the ones we got from some of the other places.

As for the Small House where my mother now lives, it is amazing! My mother is a big fish in little pond, and she’s tickled pink. She does ceramics, which she never would have tried before. She looks forward to music therapy, in which she participates wholeheartedly. Most important, she has people around her who care deeply about her, and whether I’m there or not, I know they are giving my mother the best care possible.

(As an aside, I am not only blown away by the care my mother receives, but by the care all of the residents receive. One woman no longer has the ability to speak, but that doesn’t stop the aides from giving her as much attention as they give everyone else. They attend to her as if she were their own parent, helping her put on her lipstick and the perfume that she loves.)

And the food—it is wonderful. At my mother’s first nursing home in Florida, my father had to bring all her meals because the food was inedible and she was losing weight. Here, the food is so good that, when I’m visiting if Mom does not finish what’s on her plate, I eat it! And if she wants something special, the aides cook it for her. She only has to ask. The residents even help create menus at their monthly house meetings, and many of their recommendations end up on the dining room table.

If I had to sum up what makes the Small House idea so powerful, I would say that it is the respect and the caring. The people who work there make my mother feel as if she has choices, because she does—about when to get up, what to do with her day, what tasty things to eat. And that is so important given how few choices she, like other older adults, has in other areas of her life. Every staff member I have dealt with has been so kind and giving, to my family as well as to Mom. That speaks not only to how well trained the staff is, but also to how happy they are in their jobs. And you definitely want happy people caring for the people you love.

It has been a long journey, but Mom is now in the most supportive, the most respectful, the most caring place possible. My sisters and I all agree moving Mom was the best decision we have ever made.

Hear more of Chari's story at the upcoming Long-Term Care Regional Roundtable.

Chari Tager is a dedicated daughter who enjoys spending her free time with her mother Ruth, a current resident at one of The New Jewish Home’s Small Houses in Westchester.

Tags:  caregiver  long term care  nursing home  patient and family engagement  small house 

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Be a Change Agent and Shift the Culture of Dementia Care

Posted By Kristen Cribbs, Wednesday, August 19, 2015
Updated: Wednesday, August 19, 2015

As healthcare providers working with individuals who are living with dementia, we have a lot on our plates. It’s easy to get caught up in the busy day to day and to lose patience when Mr. Jones is "just being difficult.” The Alzheimer’s Foundation of America (AFA) seeks to cultivate a more skilled and empathetic dementia care workforce by teaching professionals to look beyond behaviors and to be curious: What might Mr. Jones need? What is he trying to communicate?

Putting ourselves in the shoes of individuals living with dementia who are confused and experiencing communication challenges helps us to provide dementia care that is truly person-centered. Through setting aside our biases and agendas and being attuned to individuals in the moment, we are better able to offer the support that they need to be healthy, fulfilled and safe. Taking a "one size fits all” approach to care can limit a positive patient experience and impact an individual’s ability to make his own decisions and maintain a meaningful life with dementia. We suggest taking the time to get to know a person, their family, history, preferences and goals. Building a relationship forms the basis for effective communication – by gaining insight into the person, you are better able to understand how they convey their needs and desires.

Reflecting the mission of AFA, the Foundation’s training and education division, Dementia Care Professionals of America (DCPA), works to ensure that dementia care is person-centered, valuing the uniqueness of each individual. DCPA’s philosophy encourages interdisciplinary collaboration among care providers, care facilities, families and individuals living with dementia and ensures decision-making processes and care plans reflect an individual’s needs and desires. This approach is of the utmost importance in promoting wellness and health while improving both delivery of services and the experience of the individual who has with dementia and his family.

It is this shift in thinking that leads to an increased ability to build positive relationships and improve the experience of the individuals and families with whom we work. We are proud of all of our programming, including our new training video, which goes beyond the basics and encourages participants to think critically about their work. Emphasizing relationship-building as the cornerstone of high quality dementia care will cultivate a more skilled and empathetic workforce that is prepared to meet the unique needs of this growing population.

Although individuals with dementia may experience certain challenges as a result of the condition, this does not negate their right to lifelong learning and meaningful living. We encourage you, your staff, and your organizations to take the time to focus on the abilities, stories, and knowledge within this incredible group of people the individuals with dementia with whom you work. The relationships built in the process will be enriching not only for the people you serve, but you, as well.

Kristen Cribbs, M.P.H., is Deputy Director of Educational Services at the Alzheimer’s Foundation of America (AFA), where she oversees AFA’s Dementia Care Professionals of America and Excellence in Care programs. Her efforts focus on establishing and promoting best practices in dementia care across sectors and care settings and she is deeply committed to improving the health and quality of life of older persons. AFA is a national nonprofit dedicated to providing optimal care and services to people with dementia and their families, ultimately improving quality of life through support and education that elevates care.

Tags:  dementia  healthcare  long term care  person-centered care 

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Contemplating Person Centered Care in the Expanding Continuum

Posted By Steve Shields, Thursday, December 4, 2014
Updated: Monday, November 24, 2014

We know how it is.

Anyone with a complex medical condition knows the feeling: Your doctor refers you to one or more specialists and therapists, and with each comes a new round of appointments to schedule, forms to fill out and recitations of your medical history, current diagnosis and the medications you’re on to a stranger focused only on one part of your total wellbeing.

None of the specialists or therapists seem to have communicated with your primary doctor or with one another. You’re on your own in navigating among the enclosed organizational silos of the medical industry where people, information and transparency seldom circulate beyond departmental or organizational boundaries.

So prevalent are these silos throughout the care continuum – hospitals, out-patient services, physicians, rehab centers and nursing homes – we’ve become numb to their existence. We fail to see how they prevent us from treating the whole person in a coordinated, integrated way.

We know what it takes; we just need to embrace a framework. Yet with the rise of Accountable Care Organizations and the Affordable Care Act, the healthcare system is calling for seamless integration among all these entities to bring costs down and quality of service up. And it’s starting to dawn on us that that seamlessness needs to extend from acute to post-acute to long-term care. But until we acknowledge that silos are a major impediment to integration, we will never restructure our organizations to achieve the level of person-centered care people want and deserve.

Failure to address the issue of silos is a consistent failure among many healthcare organizations that presume to undertake the cultural transformation to person centered care. Instead of reshaping top-down hierarchies to bring decision-making more to the point of service, many instead reach only for the low-hanging fruit, i.e. they stay in the traditional organizational structure while trying to create new models of physical design or iconic elements of person centered care. The roadmap is there; we just need to adapt it for the next wave.

A few long-term care organizations have made the difficult transition from top-down organizational silos to self-led teams and cross-trained staff on the scale of households, and they are a beacon for success. What they teach us is that the act of creating organizational change is far more than the positive outcomes for residents; it is the development of the mental muscles and change in chemistry among staff and management that results. It’s like a workout to prepare ourselves for the integration of the entire health care continuum because it’s the same thinking and driving principals that are required.

If we learn from those organizations, we have the potential to enable well-being in a comprehensive way while enabling those receiving our services to stay in the driver’s seat of their own lives. Imagine the ability for people to move from the doctor to the hospital to the specialists and therapist and, ultimately, to long-term care as if it were a coordinated experience with everyone tuned in to the person; that in accessing food, medication, therapy, doctor, transportation or whatever, you’re not doing it alone.

But if we don’t do the change necessary within our own organizations, the rest of the care continuum will encounter the same problems as have the low-hanging fruit pickers in long-term care. Seamless integration among all the components will be beyond our reach.

Steve Shields is the President and CEO of Action Pact Holdings, LLC with offices in Manhattan, KS, Atlanta, GA, Milwaukee, WI and Kolkata, India. Action Pact specializes in organizational transformation and repositioning, architectural design and construction, project development services, financial forecasting and strategic planning for the senior living sector.

Tags:  Continuum of Care  long term care  patient experience  person-centered care 

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