Care requires Trust before Task

Undoubtedly, the most difficult kind of senior care is when our loved one is living with dementia. Changes in the brain that destroy their physical and cognitive abilities, but leave their emotions intact, create unique and difficult challenges that cannot be overcome with conversation, logic, or explanation, which we commonly use when caring for seniors not living with dementia. Continue readingCare requires Trust before Task”

Understanding the Care Partner Relationship

Often, when I begin a consulting or training relationship with a care partner for an individual living with dementia – whether that care partner is a family member or a paid professional – I confront an essential misunderstanding in what it is we hope to accomplish. This happens when people call upon my services with the belief that I am going to teach them some tricks that will make their loved one living with dementia behave as they want them to. Continue readingUnderstanding the Care Partner Relationship”

The Care Partner as Student

Recently, my partner Ed and I traveled to North Carolina to visit Soltys Place, a dementia day care center run by Teepa Snow, the founder of the Positive Approach to Care, which provides the core training for the philosophy and techniques of my company, Coping with Dementia LLC. We asked if it was permissible to take photographs, and Teepa replied, “Sure, all of our dementia teachers and their families have signed a photo consent agreement.” Continue readingThe Care Partner as Student”

Dementia and Firearm Safety?

The National Institute of Aging reports that more than 17 million seniors in America over the age of 65 own a firearm, and states in a recent report, “memory, thinking, and judgment as well as physical and behavioral competence issues related to an elderly person’s safe operation of a motor vehicle apply to firearms, too. Gun availability can pose a particular risk to those with dementia.” Continue readingDementia and Firearm Safety?”

The Business Case for Dementia Friendly Communities

I conduct training for Dementia Friendly businesses, churches, and communities for humanitarian reasons. Our company’s slogan is “We all deserve the best,” which I believe especially applies to families, care partners, and their loved ones living with dementia. Finding ways to help those in our community with dementia remain active, social, and engaged, with their dignity intact, is simply the right thing to do. Continue readingThe Business Case for Dementia Friendly Communities”

Seek ways to keep your loved one engaged!

Often, during counseling or while facilitating my care partner support groups, I hear the lament, “My husband (wife) can’t do anything! Not a thing!” Since most of these care partners are talking about a loved one who is still verbal and ambulatory, I know their complaint is simply not true. Yes, this is how they may see their situation, but I have learned that what they are really saying is “My loved one can’t do the things I want them to do,” or, “They can’t do the things they used to do.” Continue readingSeek ways to keep your loved one engaged!”

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”

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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”

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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]