Month: March 2022

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Building a relationship with a professional care community

Although most Americans choose to care for their loved ones at home, many do not or cannot, but choose to entrust the task to an Assisted Living Facility (ALF), a Memory Care Community, or a Skilled Nursing Environment. While these differ in cost and services, for the sake of our discussion we will use the term ALF.

There is a lot at stake when you choose placement for a loved one. The cost is significant, and you have essentially placed your loved one in the hands of strangers. The purpose of this column is to highlight some ways to build a relationship of respect and mutual trust with the ALF you have chosen.

• Read the contract and take it seriously – You will be presented a contract that may be as long as 60 pages. Read it and ask questions about anything you do not understand. Take it to an attorney if you feel you do not understand it. This will lay the foundation for a relationship of mutual respect since ALF management will see that you do not take your decision lightly.
• Your initial dialogue with when you are making a decision about placement will be with a Marketing representative. This is the time you should ask any questions you have about the contract, and it is also the time when you should make your expectations known about what your person needs and how you expect him/her to be cared for. This will lay the ground work for your relationship with the ALF’s top management.
• Once you have selected your loved one’s new home, establish a relationship with is top management. Insist on meeting the Executive Director, and let him/her know that you intend to build a productive and team-based relationship.
• Don’t be demanding or pushy. Be friendly, polite, and business-like. Again, you are laying the groundwork for a successful experience for your loved one.
• Prior to your initial meeting with the E.D., be sure you understand the Patient’s Bill of Rights and Responsibilities? It should be in your contract, and law requires the ALF to post it in public view.
• Create a history of your loved one. This can be a ring-binder containing information about their career, their family, their religion, their favorite things, etc. It should include photographs and relevant news clippings. Present this binder to the E.D. on the occasion of your first meeting and let him/her know that the individuals in charge of your loved one’s care are expected to know what it contains. Again, be friendly, humble, and businesslike. Don’t be demanding or pushy. Your goal is to build mutual respect within your team.
• Ask the E.D. how often the ALF routinely reviews and updates a patient’s Care Plan, or what kind of events or problems might trigger a review of the Care Plan. Emphasize again that you want your loved one to be considered a unique person with a unique history and unique needs, not just “Mr. Room 305.” Let it be known – again, in a businesslike manner – that you expect to be involved in meetings where the Care Plan is reviewed and updated. Keep emphasizing that your loved one’s care will be a partnership between you and the ALF’s management.
• Do not interfere with the subordinate care staff. During your visits, be friendly, polite, and reinforce or praise their efforts when appropriate. But if you see something that concerns you, do not confront the care staff involved. Take your concerns to the E.D. who may encourage you to dialogue with the Director of Nursing. But do not involve yourself in the chain-of-command below the management level.

What if your best efforts do not get positive results? You have the option to file a complaint with the Florida Agency for Health Care Administration, or you can ask to describe your concerns to an ombudsman who serves under the Florida Department of Elder Affairs.

But, let us emphasize again that Job One is to build a productive and mutually respectful relationship with your chosen ALF. If you resort to AHCA or Elder Affairs, that relationship is probably already broken, or at least it will be! This is the course of last resort and should never be considered until you stand convinced that your best negotiating and interpersonal skills have failed.

As you work to establish a productive relationship with your chosen ALF, keep my favorite slogan in mind: “We all deserve the best!”

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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Drumming and dementia!

Ritual drumming is deeply rooted in the Japanese culture, which has been presented to the West in worldwide tours by the famous Kodo Drummers. Now, researchers in Japan are studying the affects of drumming on dementia, which they believe can impede cognitive decline.

Dr. Miyazaki Atsuko has conducted a controlled experiment in which patients with moderate to advanced dementia joined groups that participated in supervised drumming for 30 minutes, three times a week, for three months. Afterward, members of this group scored more than two points higher on a standard cognitive test when compared to a control group that did not participate in drumming.

In addition to cognitive improvement, the participants showed improved physical dexterity, and many experienced weight loss. Clearly, drumming reduced their symptoms of dementia. To see a video about Dr. Miyazaki’s experiment, go to https://www.youtube.com/watch?v=FX87ay94NFE.

This does not surprise me. We have known for years that music can have beneficial affects on individuals living with dementia, and rhythm is the foundation of music. To see an impressive demonstration of this fact, I urge you to watch the movie “Alive Inside,” a documentary that features a man with advanced dementia named Henry.
Henry is unresponsive, very nearly comatose, and cannot answer a simple question or create a simple sentence. Headphones playing his favorite kind of music are placed on his head, and the response is immediate. Henry raises his head, opens his eyes, begins to move rhythmically, and begins to sing.
After a few minutes of listening to music, Henry is articulate and can carry on a conversation. He talks about his love of music and performs a hilariously accurate impersonation of one of his favorites, Cab Calloway. Henry reminisces about attending dances as a young man, and explains, “Music is love.” To see a video about Henry’s remarkable transformation, go to https://www.youtube.com/watch?v=8HLEr-zP3fc.

Unfortunately, the change will not last and Henry will lapse back into his state of silence, isolation, and inaction. But for a period of time, the affects of music are simply stunning. The research I reviewed about the drumming experiment in Japan did not present any data that would suggest that there was a residual or long-term benefit, and I suspect there is not.
We must remind ourselves that dementia is caused by a physical and progressive degradation of the brain. Brain tissue is dying, and no therapy has yet been found to actually impede this process or restore brain function in the long term.

But this does not mean that music and rhythm therapies are useless. To the contrary, they are quite effective, inexpensive, and they have none of the side effects, cost, or hazards of pharmacological therapies. We must remind ourselves that at this stage of our scientific knowledge, and in the absence of a “cure,” the greatest gift we can give our loved ones living with dementia is an improved quality of life, even if it is only temporary. Music and even pure rhythm without tonal qualities provide this.

Let us use and celebrate these simple therapies and remember that we all deserve the best.

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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Television; Friend or foe of dementia care?

In today’s world, the talking screen had become ubiquitous. It talks to us in our doctors’ offices, it entertains us with sports at bars and restaurants, and it comes on to sell us something even when we pull the handle on the gas pump! It is a fact of life that we seem unable to avoid.

I have noticed also in both professional memory care facilities and in care partner’s homes, the talking screen is ever-present. Is this good? Does it aid or detract from good dementia care?
I look at television as a tool, and like any tool it can be very helpful or extremely damaging, depending on whether we use it skillfully or haphazardly.
In determining how we use television, we must pay attention to the facts that 1) our loved ones with dementia process incoming information more slowly, if at all; and 2) they can have adverse reactions to too much visual and audio stimulation.

Too often, I visit homes or care facilities where people with dementia are sitting in a recliner, facing a big screen broadcasting 24-hour news. This, in my opinion, is the absolute worst use of television. Cable news has an excited fast-talking head that suddenly switches to a different talking head. A moving image is dancing in the background, boxes with additional images are popping in and out of the corners of the screen, and across the bottom are scrolling banners that contain information that even the quickest-witted person cannot keep up with.

It is overstimulation on steroids, and in no way is it appropriate for a person with dementia. Not only does it over-stimulate, but our person with dementia cannot tell whether the latest bombing or shooting that the talking head is breathlessly describing is taking place in another city or right outside, on our street.
My unequivocal advice is: Don’t use cable news to baby sit your loved one with dementia. It is the equivalent of cruel and unusual punishment!

But this doesn’t mean all television is bad. There are shows that can create a calming effect, which can be both appropriate and helpful. Certain forms of sports, such as tennis, baseball, or golf seem to sooth a person with dementia. They may have no idea who is playing, winning, or losing, but the repetitive motion of the game seems to have a calming effect. But avoid the kind of sport shows that focus on over-excited, loud, shouting announcers. Again, avoid the talking heads.

Movie can be beneficial. Movies that are nostalgic for your person, or that contain beautiful landscapes, quiet dialogue, or soothing music can work well. My husband dearly loved musicals. I wasn’t too excited about watching “The Sound of Music” for the hundredth time, but it always calmed him, resulting in a smooth and peaceful transition to bed each evening.

There are now special television services designed specifically for seniors or families living with dementia. Uniper TV offers free interactive programming aimed at the interests of senior viewers. To learn more, go to https://www.unipercare.com/. And Zinnia offers a subscription service intended specifically for individuals living with dementia. Check it out at https://www.zinniatv.com/.

As dementia practitioners, we often advise care partners to avoid the overstimulation of television, but this does not mean it is inherently bad. Television is simply a tool that you can use for good or ill. Used wisely, it can give a care partner hours of respite, and his or her loved one hours of tranquility.

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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How Hogeweyk “normalizes” dementia

Last month, my column was about my recent visit to the Netherlands for a tour and workshop at Hogeweyk, famously known worldwide as the “Dementia Village.”
The first thing I learned was that no one ever refers to Hogeweyk as a “dementia village.”

This is the term Sanjay Gupta coined some five years ago in his visit and story for CNN. Gupta used that term so his American audience would quickly grasp what he was talking about. But not only do the managers not use the term; they really don’t like it!

Their choice to avoid the term “dementia village” reflects their essential commitment to an atmosphere and practice of “normalcy” in their environment and techniques of dementia care. They are not hiding what they do. They are not ashamed of it. They simply believe that NOT separating people living with dementia from the world in which they grew up is the key to better care and quality of life, and this belief permeates how they think and everything they do.

For example, the people at Hogeweyk actually laughed when one in our group used the term “pet therapy.” We could tell from the blank stares among our delegation that something was going on that we did not understand.
Then they gently explained, “Do you use the term ‘pet therapy’ when little children respond well to animals? No, they simply love animals! It is a natural human response. There is no ‘therapy’ to it. It is the same with people with dementia. Our need to think of their natural love of animals as some kind of ‘therapy’ that we discovered is an example of us setting them apart from the rest of the world, whether we realize it or not.”

This is why, as I mentioned in my column last month, their care staff do not wear scrubs, uniforms, or even name tags. They are just people living in the village with their friends with dementia. As I began to gasp this concept, I began to notice how hard they try at Hogeweyk to pursue normalcy in every little detail.
I also mentioned last month the Hogeweyk has an open gate, but very little trouble with wandering. This is because their residents are comfortable where they are. There is nothing unfamiliar to alienate or frighten them, so they feel little reason to “escape.” Hogeweyk actually encourages mobility, which is not the case in too many of our dementia care facilities in our own country.

Here in America, we certainly grasp this concept of “normalcy,” but we have not yet even begun to dip our toe into the water. For example, we place familiar objects in the rooms of our residents living with dementia, but the moment they leave their room they step into the hallways of a medical factory.

Yes, I use the term “factory!” Our medical care has evolved from the concepts of efficiency and replication spawned by the industrial revolution. This may work well for many kinds of physical illness, but it does not work well for diseases of the mind when change and unfamiliarity can be confusing and frightening.

I wonder if we harm our loved ones with dementia even more by toying with little tokens of nostalgia and familiarity in parts of their environment, then thrusting them into common areas that are similar to the emergency rooms of hospitals or the lobbies of hotels. Surely this must be confusing and jarring to minds that are already struggling to understand why, who, and where they are.

Here is the link to the video of Sanjay Gupta’s visit to Hogeweyk.
https://www.youtube.com/watch?v=LwiOBlyWpko

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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Hogeweyk: A model for person-centered compassionate care

November is National Alzheimer’s Month. This will be used by many organizations to supercharge their efforts to solicit donations for a cure. Well and good, but I would like to see an equal level of enthusiasm directed toward funding to support family care partners and organizations that promote person-centered compassionate care. For those already in the journey, a cure cannot come soon enough.

I have just returned from the Netherlands where I spent two priceless days of learning at Hogeweyk, otherwise known worldwide as the Dementia Village. It is, in my opinion, a world-class model of best practices in person-centered care. Since its founding some 20 years ago, this organization has continued to seek, find, and implement better practices of compassionate dementia care.

The goal of Hogeweyk is to provide a “normal” environment. Seniors classified with severe to end-of-life dementia live in “villages/homes,” not in little rooms in big buildings that look like hospitals, factories, or hotels. Hogeweyk simulates four different Dutch lifestyles, and residents are evaluated to live in the village that best duplicate the lifestyles in which they were raised and lived prior to dementia.

Because daily shopping for groceries is still a society-wide practice in the Netherlands, Hogeweyk has its own market where residents go each day to shop. There is a restaurant, but most residents eat in their own apartments which are carefully outfitted with the furniture, tableware, and decorations consistent with their “lifestyle.”
It is a gated community, but not locked down. Residents are free to go where they choose, but wandering outside rarely happens because they are comfortable and have what they need in the environment that has been created for them. Hogeweyk is studiously maintained to NOT look anything like a hospital or health facility. Care staff do not wear scrubs; rather they wear normal street clothes with no name tags.

“Normalcy” is so well maintained that people come in from the town to enjoy Hogeweyk’s restaurant, which helps supplement the community’s income. Sometimes, it is a bit difficult to tell residents from the visitors. And among the residents, I saw very few using wheel chairs. Most residents are mobile, spending their time outside, in social activities, or interacting with the people of the community.

My mind is still spinning from this experience, trying to process the things I saw that were so different from the kind of senior care we are used to. I expect I will be sharing more of my thoughts about Hogeweyk in future columns.

Could these techniques of person-centered compassionate care be implemented on a national scale through our system of institutional care? I don’t know, but I think we should be doing everything we can to find out. This is why we recently created in Citrus County a nonprofit organization with the stated vision to create an institute for researching, teaching, and promoting techniques of compassionate care, including nonpharmacological therapies.

It does work; I’ve seen it work. And I believe pursuit of the methods I’ve seen at Hogeweyk is the best way we can use the resources we have until someone comes up with that illusive cure.

Here is the link to the video of Sanjay Gupta’s visit to Hogeweyk.
https://www.youtube.com/watch?v=LwiOBlyWpko

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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What are the stages of dementia, and should you really care?

Many people think their understanding of dementia depends on knowing what “stage” their loved one is in. On average, dementia lasts eight to 12 years between diagnosis and death. It is progressive, irreversible, and fatal since no cure has yet been developed. But the symptoms and progress of dementia can be unique to the individual, often defying any tidy organization into “stages.”

First, there is no single system to identify stages of dementia. Some dementia practitioners say there are three stages, some say four, and some say there are five. Perhaps the most widely recognized scale among neurologists is the Global Deterioration Scale developed by Dr. Barry Reisberg in 1983, which identifies seven stages. But then there is FAST — the Functional Assessment Staging Test – that subdivides these seven stages into 16! Confused yet?

I can understand how these analytical approaches to categorizing the progress of mental and physical deterioration caused by dementia can be helpful for scientific research into therapies that can improve quality of life, but how can identifying and talking about the “stages” possibly help our care partners who struggle daily with real-world dementia? Your assigning your loved one a “stage” does not make him or her feel any better; nor does it make your task any easier.

I believe that focusing on the so-called “stages” of dementia is at best irrelevant to good care, and at worst detrimental to a care partner’s emotional health and wellbeing. Not only can it paralyze the care partner with fear when they must look down that long road of future “stages,” but it also can cause them to focus on the medical aspects of the disease – which they can’t do anything about — rather than the immediate quality of life of the person they are caring for.

In short, talking or worrying about “stages” gets in the way of our living in the moment and focusing on the quality of life of our loved one in the here-and-now, rather than what they are going to be like at a later “stage” of the process.

I am all for care partners knowing as much as they can about the medical aspects of Alzheimer’s disease and other forms of dementia, but not if it distracts them from seeing their loved one as a human being who is experiencing real suffering that cannot be relieved one bit by wrapping it in a label that defines and numbers it as a “stage.”
We know there are going to be changes as the disease progresses, but fixating on when they will come and what they will look like takes us out of the moment and distracts us from helping our loved ones through the process with compassion, empathy, and understanding.

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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Managing Expectations with dementia

As we hope for the decline of COVID, all of us are looking for opportunities to return to “normal,” which often includes travel. It is no different for care partners and their loved ones living with dementia, except for them traveling can present greater challenges.

Recently, I got a call from a member of one of my support groups who had just traveled to a northern state. She told me she thought everything was going well, until the day after her arrival when she experienced a complete emotional melt-down. She said she didn’t see it coming, and was confused that it had happened.

I asked about details of the trip and learned that they had departed Florida late in the day, which created a problem finding a room where they discovered they had left behind medications and dog food. Turns out, they were traveling not with a mature dog, but with a puppy! Their trip covered 1,200 miles over a four-day period, which included stopping to attend a funeral. In addition, our friend who solely manage this journey, including caring for her husband with dementia, is 80 years old!

Wow! This would have been a daunting and trouble-fraught task for a person half her age, and I was quite puzzled that she was puzzled that she had paid an emotional price.
I think the lesson here is that some of us may make assumptions that the “new normal” will be just a continuation of life as we knew it before COVID. Believing this, we think we can jump back into life as we knew it, and as we previously managed it.

I don’t think we can. First, as care partners we have all aged during a time of our lives when aging can bring on significant changes, including decline in our physical abilities. Second, our loved one with dementia has likely declined more than they would have over the same period without COVID. We have seen clear and frequent evidence of this!

I believe it is healthy and important for us to get back into the world, but I wonder if we should greatly moderate our expectations. We can do this by planning to take on less than we think we can handle. We can always ramp up our plans and responsibilities, but not fulfilling them can lead to the kind of emotional toll my friend experienced.

Find ways to ease back into a semblance of your previous life. Don’t make assumptions that you have your pre-COVID strengths and abilities. Pace yourself and watch closely for signs that you may be taking on too much.

As for travel, it has always been a serious challenge for families living with dementia. It is never easy. But there is plenty of good guidance out there. For example, check out the suggestions on Teepa Snow’s web site at https://teepasnow.com/?s=travel+planning.

And continue the support group connections you have made during COVID. Even when you travel, arrange your schedule to check in with the others who care about you. None of us should try to manage dementia alone.

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]