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Author: 
Kim Warchol, President and Founder of DCS at CPI 

OK, here we go. I am going to interrupt my normal “how to,” information laden blogs with a bit of a rant to hopefully raise awareness and inspire some important advocacy. This is a point of view blog, which feels like it must be shared. I keep coming across situations in my personal and professional life that are so genuinely concerning, I just had to write this. In each case there is a clear need for more awareness, honest discussion, and advocacy for solutions and improvement.

I want to thank you for all the good work you are doing!

And there’s so much more for us to do.

Let’s work together to wipe out barriers and address insidious and pervasive discrimination that suppresses the quality of life of those living with dementia and our elders. Now please, read on.

The three needs for advocacy I’ll shed light on today are:
  1. Advocating for a trained, dementia capable workforce.

  2. (If you are a healthcare professional) Advocating for delivery of your services, no matter what barriers present themselves.

  3. Advocating to ensure our elders and those with dementia have whatever it takes to engage in life and community safely and effectively.

First, I’ll share a personal story…..

Recently, I had a conversation with a close friend, whose father has had Parkinson’s dementia (or possibly Lewy body dementia) for the past 3 years. He was just brought into a memory care facility for a 30-day respite stay, with what sounds like early-stage dementia and in relatively good health in terms of mobility and stability. After just two weeks into his respite stay at the memory care facility, the management told his daughter (my friend) and his wife that he required three people to help him stand up, transfer, and walk, and may need to stay long-term because he would be too much work for his wife at home. My friend called me, in tears, wondering how his dementia and condition could have deteriorated so fast, in just two short weeks.

A three-person transfer? Really? First, what is a three-person transfer? And why would three people be needed? Sounds more like a fight ensued than care assistance provided. My friend said when she visited him during his respite stay, she saw him able to get up and go. Hmmm….I think we all know the culprit behind this new, massive amount of “required” assistance. The staff lacks the training to gain her dad’s trust and agreement and understanding, so they force him, tug on him, lift him, fighting against his will. UGH! What are we doing out there? And this is supposedly specialized memory care?

The facility leadership suggested that in just two short weeks of respite stay he had experienced a severe decline (and they suggested this without any new medical testing). Is her dad showing a decline in function? Yes, but before we assume this is a true decline in cognition or physical ability due to advancement of his Parkinson’s dementia, we must explore the likelihood that this is an adjustment issue and therefore a temporary decline. This was never mentioned by the facility.

My friend’s dad has found himself in a situation in which everyone and everything is new, and his cognition cannot rise to the level of capacity to figure it out and reason why he is there. He doesn’t know or trust these strangers, he doesn’t know where his bathroom in this new place is, etc. It’s confusing, overwhelming, and scary. And of course, what does he ask his daughter? “When can we go home?” Home is more than bricks and mortar. It is familiar, safe, and comfortable and yes, it is likely where someone will function best, until they have had time to adjust to a new living environment.

I know I’m preaching to the choir but… come on … This should be dementia care 101. As care providers we know, change is hard on a person with dementia so we must work extra hard to gain attention, trust, agreement, and understanding. Without those things, we have nothing, and the person will appear far more dependent than they are. When feeling unseen, unsafe, and unsure, they are likely going to be scared and resist. Wouldn’t you if you were in a strange place, with strangers and unclear and uncertain about where you were going, with who, and why?

I guided my friend through this discussion. We talked about how to help the staff implement person-centered care by teaching them about her dad -what he can do for himself, how he does it, what motivates him, and what helps him to feel safer and more comfortable. I encouraged her to show the staff how well he can do with her directions and assistance, and hopefully they will learn to mirror this approach.

By approaching a change in condition in this way, we don’t jump to conclusions that this is disease progression, but instead we look for reasonable explanations for a decline. When staff are dementia specialized, they will understand this and do everything to help a person adjust, adapt, and transition with the least negative impact on function and emotional well-being. We must do better! We must advocate for a dementia capable workforce now, so avoidable and challenging situations like these aren’t the norm! Let’s explore this and other advocacy needs.

1. Let’s advocate for a trained, dementia capable workforce.

Not only do we have to do better for my friend and her family but there are so many who are living with the realities of dementia. In the most recent Alzheimer’s Association Facts and Figures report, it states the number of people with Alzheimer’s over age 65 is rapidly and steadily growing and is predicted to double in about 25 years. Will it be you, me, a friend, a loved one? That we don’t know, but we do know it is just a matter of time until this becomes a very personal matter for every one of us.

The Alzheimer’s Association report predicts over 1 million new direct care workers will be needed, along with many more healthcare professionals. It will require many more people than we have today to provide proper healthcare services and direct care support. Sobering fact, indeed. Therefore, we must advocate for people to go into these professions to build up this workforce.

But I would go on to say that the problem isn’t just the insufficient quantity, but it is also inadequate quality. As my personal story exemplified, we must have a dementia capable workforce, equipped with specialized knowledge and skills to accurately assess, treat, and care for these individuals. Yes, we lack quantity but what good is increasing the number of workers if they don’t have the proper training?

Basic, generalized education and training doesn’t cut it. There are specialized skills healthcare professionals such as nurses and occupational therapists must possess or the person in care doesn’t receive the medical treatments and rehabilitation they may require. And all who work with clients with dementia (e.g. nursing assistants) must have some dementia care skills.

Specialized skills that apply to all who work in the field include things such as being able to adapt  approach and communication, the activity, and the environment to support the person at their stage of dementia. Staff must know how to deliver person centered care. And, they must know how to prevent, identify, and safely de-escalate commonly seen distress behaviors, without using drugs. Working cohesively together, this healthcare team of professionals and direct care staff can optimize the level of independence, health, safety, and quality of life of those in care, and reduce caregiver burden and stress. These are the goals of quality dementia/memory care.

I think most would agree with the need for a robust and qualified workforce, but the next important question is who is responsible for training these professionals and direct caregivers? Is it the educational/preparatory institutions, the employer, or the employee? And what are the standards for quality training? These questions haven’t been answered in a meaningful way, and as a result many go untrained and are unqualified to care for our elders with dementia, but the clock is ticking. Without a workforce with specialized knowledge & skills, the quality of dementia care in this country will be poor, and those living with dementia, and their loved ones, will suffer.

I think we must take a moment to talk about compassion.
“What compels someone to want to change the status quo, grow, evolve, and fight for better for themselves, others, or society, no matter how difficult? Compassion! Compassion drives advocates and advocacy. – Kim”

Are you an educator in a higher education institution or do you work at a CNA training organization? Fight for quality dementia training in your curriculum. Help your students to be prepared and succeed in the real world and grow your student base. Are you a corporate trainer working in a home care or long-term care organization? Fight for the budget to train and prepare your staff to ensure they are confident and competent to provide dementia care. Think of how this investment can help your outcomes, build census, and attract and maintain qualified staff. Are you a healthcare professional? What can you do for yourself to learn these important skills? Investing in yourself…is that ever going to be a bad idea? Are you an owner? Create the kind of place you would want to live in. If you are already doing one or more of these things, say it loud and proud, and thank you for your leadership! If each of us does something more, the tide will begin to shift faster for the better. And it must!

2. (If you are a healthcare professional) Advocate for delivery of your services, no matter what barriers present themselves.

As history shows, I believe in advocacy, and I am an advocate. Because it is necessary, I am often engaged in advocacy as related to my vision of creating a dementia capable society, delivered by a dementia capable workforce who provides high-quality healthcare for those living with Alzheimer’s and other dementias.

As a historical example of our advocacy work, in 2000 and 2001, my company, Dementia Care Specialists was not able to get reimbursed for the evaluation and treatment services we provided for people with dementia as an Occupational Therapy Medicare Part B private practice. We were told by the intermediary (the middle organization between us and Medicare who has the role to receive, review and process our Medicare claims for reimbursement), that there was nothing an occupational therapist or other rehab professional could do to help someone with dementia. This was an absolute non-truth, but they held firmly in their position, and so did we.

We use Claudia Allen’s Cognitive Disabilities Model in our work, so we partnered with Claudia Allen, a highly regarded occupational therapist and expert in functional cognition, and the National Alzheimer’s Association, and we brought this concern directly to Medicare. We provided expert testimony, and we showed many positive outcome examples of our dementia specialized occupational therapy services for our patients. Guess what? We won! That advocacy work led to the September 2001 CMS Program Memorandum that prohibited the denial of therapy services based solely on a diagnosis of dementia. Yay!

But wait. Fast forward to the current day and there continues to be challenges occupational therapists and other professionals must overcome to serve those living with dementia. There are so many reasons we must find a way to deliver our services, because it matters.

As an example, occupational therapists focus on function. Our objective is to help a person across the lifespan to function at their best ability, even when their condition cannot be cured. Cognition is the primary determinant of a person’s level of function. A person cannot function higher (or better) than their cognitive level (or dementia stage) allows, and unfortunately, they often function below their actual potential. The goal is to create a match between what they can do and what we encourage and ask them to do, in everyday life activities.

When we don’t have this match, we create preventable and serious problems. Thinking someone can do more than they are capable of (as we see in the early stages) or suppressing their functional potential (as we see in the mid to later stages) causes significant problems for the person and for their caregivers. Believing a person is more capable often creates accidents, injuries, and emotional stress such as anxiety. Preventing a person from doing what they can for themselves creates excess disability (disproportionate dependence) that accelerates their deterioration in cognitive and physical abilities and emotional well-being and creates added burden on caregivers.

A dementia specialized occupational therapist can perform an evidence based functional cognitive assessment (such as using Allen’s Cognitive Disabilities Model and assessments). We then provide skilled “habilitation” interventions that include adapting the activities the person wants or needs to perform, to the just right challenge level, by using our OT skills of cognitive activity analysis to match the cognitive capacity they have at that cognitive level/dementia stage.

Even though that’s the right approach for great results that can really help those living with dementia and their caregivers and loved ones, there are barriers requiring continued advocacy. As examples:

  • There are codes therapists must use to describe the assessment and treatment intervention provided and some of those codes may not be accepted by some insurers.
  • I’m hearing some organizations that employ therapists may tell them they can’t or shouldn’t provide their services to people with Alzheimer’s or other dementias. The codes the dementia trained therapist needs to use for billing may not be available in their electronic documentation system, the new codes may not be understood or encouraged to be used, or they aren’t aware of the September 2001 CMS Memorandum and rule changes.
  • Physicians may not want to write the therapy referral because they are not up to date on the many ways a dementia trained occupational therapist (or another rehab professional) can help.

In actuality, there continues to be many advancements and better opportunities for professionals to provide their services to individuals with dementia due to advocacy from organizations like the American Occupational Therapy Association. Since 2020 we now have codes we can use to bill for cognitive treatment and assessment and just within the last few months we have another new opportunity to train (family) caregivers as a part of our treatment. But these wonderful advancements aren’t always translating into practice and thus important professional services like these aren’t routinely and consistently provided to those with dementia as they should.

But you see, this is a chicken and egg situation because if occupational therapists don’t provide these very needed specialized services or if they hide the service using other codes, Medicare and other insurers will never be aware of these powerful and effective services provided by this valuable professional. Therapists and employers can’t just take the easy route to payment today. We must fight for the use of the codes, ask for physician referral, and take this as an opportunity to educate, and update electronic documentation systems. We know this isn’t about fighting for the right to use a code or trying to build a caseload. We are advocating for the millions who need and deserve quality dementia care, assessment, and intervention from a healthcare team.

3. Advocate to ensure our elders and those with dementia have whatever it takes to engage in life and community safely and effectively.

Bias is an unspoken, pervasive obstacle in society. I observe and hear much evidence of ageism and bias against our elders and those with dementia. Ageism refers to stereotypes (how we think), prejudice (how we feel) and discrimination (how we act) towards others or oneself based on age. “Implicit or unconscious bias operates outside of the person's awareness and can be in direct contradiction to a person's espoused beliefs and values. What is so dangerous about implicit bias is that it automatically seeps into a person's affect or behavior and is outside of the full awareness of that person.”

So, what can we do? First, we must look in a mirror and take a close, honest look at our own behavior. We must be careful to not inadvertently negatively impact our elders or those living with dementia with harmful bias, disregard, or inactions. When we see a problem, do we help? Do we speak up? We must advocate for their rights, their well-being, and safety at every opportunity. And  there are many opportunities to take a stand.

Here are a few examples of everyday situations that may negatively affect someone with challenges associated with dementia or aging. I believe they have some roots in unconscious bias.

Use of technology without consideration of the disabling, negative impact: Those with cognitive challenges thrive on routine. Adjusting to change and learning something new becomes difficult, if not impossible. Therefore, how does the widespread prevalence of technology used to replace human interaction hinder, as they try to engage in their world. What disregard or judgments might we hold as folks struggle? What can be done to ensure the world is dementia and aging supportive? Examples:

  • Apps and portals may have many benefits but what if the user can’t use them? The other day an elderly friend said, “All of my medical information is in the computer and that is also how I am to communicate with my medical team, but I don’t know how.” When I asked how she managed these important communications, she sadly said, “I don’t.” But she needs to! What impact does this lack of ability to access test results and talk with a medical team have on those like my friend?
  • Stores and restaurants are constantly implementing technology to order, check-out, and pay. How does someone feel if they can’t do it? Do they stop going? Then what?
  • Complicated phone systems are filled with choices that will make your head spin, and they are often the only option. We may not even be provided with a phone number to call. Who can someone call if they need to talk to a person, like an operator? What are the consequences for someone who is unable to navigate the phone tree or use an app?

Scams: Who is protecting our elders from these piranhas that make a living by preying on kindness and vulnerabilities? And how can these people who defraud our elders and the most vulnerable in our population sleep at night? Shameful! But, what added protections can we put in place to protect our elders now? What can we do in our families and what more can we ask of legislators?

Quality of Care: Thankfully there are some fantastic senior living, home care, and other organizations, but sadly, there just aren’t enough. Honestly, would we put our pet in some care facilities or trust our pet to be cared for by some agencies? We can’t turn a blind eye to the poor care or living conditions being delivered by some. And why do some staff call a memory care neighborhood a lock down unit? Isn’t that where criminals live and are locked away for the crimes they committed? If we are not the one using that term, we must be the one pointing out the fact that we are insinuating those with dementia should be “locked away” and “out-of-sight.” Words matter!

Impatience and judgement: One day we will all be old. And according to the stats, we will have a 1 in 3 chance of having dementia if we live to age 85. Think about this if you find yourself sitting in judgment. If personalizing this situation doesn’t have an impact, then how about comparing our perceptions of elders to that of a similar group, children. We must be as understanding of the limitations of an elder with dementia who has declining cognition and emotional regulation as we are of child’s mind and behavior. If we sigh with impatience when someone is struggling to do a daily life skill like paying at the register- instead, stop and help. If we become frustrated with the repeated questions or emotional melt downs of an elder with dementia, ask yourself, “Would I have this same response if this was a 4-year-old?” Why do some treat elders with dementia, who are just as deserving as a young child, differently than those in their youth? Those at the end of life are just as deserving of our kindness, help, and patience as those in the beginning of life.

In summary, discrimination comes in many forms and advocates won’t need to look far to find ways to open minds, take on challenges, and take down roadblocks to make a difference.

Do you see yourself or someone you know in any of these scenarios I’ve shared? Can you find new opportunities, no matter how small, to advocate even more for the needs of our elders and those living with dementia? Don’t ignore it and push on. Deplore it and do something about it! Advocate! The only requirement for this important job is your compassion.

Being an advocate for quality care and a better life for those living with dementia and their loved ones includes being prepared to serve. If you or your organization needs specialized knowledge and skills, please learn more about our Dementia Capable Care training programs, credentials, and recognitions. We welcome all who want to become part of the solution. 

Contact us: Phone: 866-954-1910 E-mail: DCSsolutions@crisisprevention.com 

Posted June 2024

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