Where a patient lives may be the biggest factor for a dementia diagnosis

A University of Michigan study found significant regional differences in the likelihood of receiving a dementia diagnosis in the United States, which could have profound implications for accessing new treatments for Alzheimer's disease and other forms of dementia. The research found that the percentage of people diagnosed with dementia each year varies widely across regions, with particularly stark differences for those aged 66 to 74 and individuals who are Black or Hispanic.

The study, published in Alzheimer's & Dementia: The Journal of the Alzheimer's Association, suggests that where a person lives may play a more significant role in whether they receive a dementia diagnosis than individual risk factors. According to the findings, someone in one region of the U.S. could be twice as likely to be diagnosed with dementia as someone in another region.

Julie Bynum, M.D., a U-M Health geriatrician and lead author of the study, emphasized the need to address these disparities. "These findings go beyond demographic and population-level differences in risk and indicate that there are health system-level differences that could be targeted and remediated," said Bynum in a statement. She noted that the variation in diagnosis rates could be due to differences in health care practices, patient knowledge, and care-seeking behaviors.

The study analyzed data from 4.8 million Medicare beneficiaries aged 66 and older in 2019, focusing on "diagnostic intensity" across 306 hospital referral regions (HRRs). Researchers found that while nearly 7 million Americans currently have a dementia diagnosis, many more likely have symptoms but remain undiagnosed. Access to advanced dementia treatments, including new medications and diagnostic tests, requires a formal diagnosis.

The study found that the prevalence of diagnosed dementia ranged from 4% to 14% across HRRs, with new diagnoses in 2019 ranging from 1.7% to 5.4%. After adjusting for various factors, including education level, smoking rates, obesity, and diabetes, researchers calculated that people in low-intensity areas were 28% less likely to be diagnosed with dementia, while those in high-intensity areas were 36% more likely.

The concentration of dementia diagnoses was highest in the southern U.S., but this pattern shifted once researchers accounted for other risk factors. Bynum suggested that the variation could stem from differences in clinical practices, such as how frequently primary care physicians screen for dementia or the availability of specialists.

Bynum called for increased efforts to ensure early identification of cognitive issues, especially in younger Medicare populations. She also encouraged individuals to advocate for themselves to receive cognitive screenings, which are covered by Medicare during annual wellness visits.

Bynum highlighted Medicare's recent GUIDE model for dementia care as a potential avenue for improving care coordination and access. This new model incentivizes clinical practices to provide better dementia care and offer 24/7 access to trained providers.

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FINDING STRENGTH IN CAREGIVING BY KAMARIA MOORE

Guest blogger: Kamaria Moore

Hi everyone,


My name is Kamaria Moore and I am the primary caregiver for my mother, Mary. She was diagnosed with early onset Alzheimers at 58, when I was 28. She is now 59 years old and I’m 31. My mom was previously living independently in a three-story family home, but recently has been hospitalized. Doctors have been unable to determine her diagnosis, so we’re in a state of limbo where we don’t really know how long she will be there and what her functioning capacity will be afterwards. I am spending as much time with her as I can at the hospital, and I take care of all health care, living logistics, and fiscal responsibilities.


My husband and I just got married on May 7th and celebrated our honeymoon in Puerto Rico. I work for the state of Massachusetts. As difficult as it was not having my mother to assist with wedding planning, it was even more difficult not having her at my wedding because of her sudden hospitalization. The juxtaposition of one of the happiest days of my life with serious concern over my mother’s health was incredibly difficult for me, but we still managed to have an awesome time and showed her all sorts of pictures and videos afterwards.The Massachusetts/New Hampshire Alzheimer’s Association chapter has been incredibly helpful to me, and was instrumental in helping me line up initial supports when we received the diagnosis. One example was a support group for young people whose parents have early onset. I attended this group pretty regularly for about a year, but I often felt like I shouldn’t say anything because my experience was so different from everyone’s. I was the only person of color, and most people’s parents had either a husband or wife to assist in the caregiving. Because of this, their experience was mostly about enjoying their role as caregiver, and being able to enjoy the time spent with their parent. While I appreciated everyone’s shared experience, I felt like I couldn’t honestly express the difficulties I had with being a caregiver. This feeling led me to want to share my own story, which led me to this profile.


During this time, I have recognized my own strength. I have cared for both my parents off and on since 2007, and during this time have been able to obtain and keep full time employment, maintain healthy relationships with friends and family, purchase a home and get married. I am becoming someone who can balance life really well, including balancing care for mom with care for self. I’m strong enough to be there for her and know that it is ok to want my own life, although it is still something I struggle with often. I have learned that it’s okay to maintain my own life and happiness in order to be the best caregiver possible.


I’ve been able to use resources to fill in the gaps. My mom has really found a place in church so my cousins take her and it gives me a break. I’ve learned through caregiving that my strengths are logistics, so I take care of those, and my family takes care of providing her a social and emotional output. She attends an elder service day program which provides her with social interaction and support. She still maintains a few hobbies, including coloring which she is really proud to show off!


If there’s anything I hope comes from this profile, it’s that someone out there sees it and sees a reflection of themselves and their stories in it, and for just a second feels a little bit better.

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Tips for Caregivers – Communication Techniques

“It’s not always what you say but how you say it.”

• Speak slowly and clearly
• Be aware of body language
• Use visual cues
• Approach from front
• Address by name
• Meet at eye level
• Short questions, one at a time
• Break down tasks into one step at a time
• Repeat using same wording, if that doesn’t work, rephrase
• Avoid negative statements (don’t use “don’t”)
• Allow adequate time for response
• Utilize humor
• Keep talking even if nonverbal

Communication is hard because person cannot remember things, can’t find words, difficulty understanding what is said, difficulty paying attention, remembering steps, blocking out background noise, being sensitive to touch, or tone or loudness of voice.

To Help Make Communication Easier:

• Make eye contact
• Call the person by name
• Be aware of your tone and how loud your voice is
• How you look at the person
• Body language
• Encourage 2-way communication as long as possible
• Gentle touching
• Try distracting/redirecting if communication creates problems
• Be open and agreeable even if the person is difficult to understand
• Let them make some decisions and stay involved
• Speak at eye level
• Offer simple step-by-step instructions
• Repeat instructions and allow more time for response
• Don’t talk about the person as if he or she isn’t there
• Don’t use “baby talk” or a “baby voice”
• Ask yes or no questions
• If they make a mistake say, “let’s try it this way”
• Say “please do this” instead of “don’t”
• Limit choices – do you want chicken or beef?
• Instead of asking if they’re hungry say, “dinner is ready”
• Try not to say “don’t you remember?” or “remember when”
• Use visual cues

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The Hardest Part Is Knowing...

  I think the hardest part of this disease is realizing you have it. Knowing a bit of you is being lost every day.

 Knowing one day, just not what day, but one day you will not recognize your family. The people in your lives, the caregivers if you will, struggle with this daily also.


I overheard our nieces talking over the weekend, asking each other if I was alright, if I had done or said anything I shouldn't have.


Knowing that these two have to ask questions like this just breaks my heart. They see their Uncle Ricky slipping away. I was unable to do the things I used to do with them at the water park.


I watched them, thinking to myself that I always hated to see parents not interacting with their kids at events like this. And now, I was or have become the very thing I hated.


It's the disease, it's always the disease. But just being there with them was enough for them. I know that. They wanted me to go down the super slides with them, as we have always done in the past.
But with this disease, it would never allow me to stand in line, in close quarters with hundreds of people. Even with my dementia service dog, Sam, there are limits, things I just won't do to bring unnecessary stress upon myself.


The Uncle Ricky they once knew, who could do all these things and much more, is no longer here. I do the best I can with them. And that is enough for them.


But I see it in their eyes. I hear the whispers to Aunt and Grandma Phyllis, "Why won't he get in the water?" She just says, "He can't girls..."


This and much, much more is what this horrible disease takes from you. I posted that the weekend went fine. And in a sense it did. I was not stressed, no anxiety, or fear.


But, one must know that the person I was, I am no more. It's hard for adults to realize this, let alone kids...


I wanted to post this so everyone knows and remembers that what once was, the person your Mom, Dad, or whoever it is, is no longer. What they once loved to do could now scare them to death. What they once loved to eat, they may now hate the very smell of it.


It's the disease that does this to us. I'ts always the disease. When I say or do something I would not have done in the past, I find that I don't catch it anymore. I am slipping. We all are who fight this disease.


It is without a doubt the hardest thing anyone will deal with, regardless of whether you are a patient or family member.

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One of Those Days with Alzheimer's

There are times, not many, but there are times when you do some of the dumbest things.

I like to blame the disease in cases like this. Everything started out fine today. Until I was sweeping out my truck. I have a shop vac and I get so tired of those wheels coming off.

 

Every time I pick it up, one, two, sometimes three wheels come off. I fixed that. I got out my super duper gorilla glue. That stuff will stick to anything and once it's on there ain't no getting it off.

Things were going well. All glued up, I was done sweeping, so I just let it sit so it would set up good and proper.

 

Sam (my dementia service dog) and I had a couple of things to do, and when we got back I thought I'll put the shop vac back. It has to be set up by now.

 

It was. Now comes the part where "things happen." Somehow some of the glue had went from the wheel housing, to the wheel, to the floor.

 

It was stuck like Chuck to the garage floor. Three out of four wheels. Could have been worse, could have been all four.

 

And when they say gorilla glue works, they mean it. There was no moving the thing. Wouldn't budge an inch. So...I figure I would take a hammer and tap each wheel.

 

Break it loose, if you will. I suppose this is the part where I don't realize the difference between a tap, and a whack.

 

I got them loose but not before breaking the one wheel off. So now I have a tripod shopvac.

 

And that all happened before 10:00 am. I can't wait to see what the rest of the day brings...

 

Editor's note: Rick's journey with Early Onset Alzheimer's Disease was chronicled in "Fade to Blank: Life Inside Alzheimer's," an in-depth look at the real lives of families affected by the Alzheimer's epidemic. His story continues on his personal blog on AgingCare.com.

 

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Blood Testing For Alzheimer's and Dementia

Are we ready for a blood test predicting Alzheimer’s?

 

 

This is GREAT!
After all, it casts light on what we need–greater awareness of dementia, which was identified recently as the third leading killer behind heart disease and cancer.
Not so fast.

The research results are great, but what do we do with them?

Since the nineties when I jumped into this field with both feet and became a national family caregiver spokesperson (I was told others were not speaking publicly), there has been a STIGMA of DEMENTIA…it continues nearly two decades later.

Researchers from Georgetown University, the University of California at Irvine, and four other institutions identified ten lipids (fats) in our blood that can predict mild cognitive impairment (MCI) or Alzheimer’s. Low levels of these biomarkers indicate a strong likelihood (90%) that one will develop one of these forms of dementia within three years.

HYPOTHETICALLY SPEAKING…

Let’s say I ask my doctor to order this test and it shows low levels of these ten fats in my blood. (I started taking medication for high cholesterol, so it’s unlikely I’ll have low lipid levels).

What will I do with the results?

IF I’m seventy years of age or older (age of the study participants), I’ll start getting my affairs in order.

Can I apply for long-term care and in good conscience deny there’s anything wrong because the researchers promise to keep the results private? That’s a question of integrity. If two people have an affair and promise to keep it a secret …? Well, we know how that often ends.

Let’s take this hypothetical “What if…?” a step further.

What happens when I share the test results with my friends and family?

Driving: Brenda, how about if I drive, today? Tomorrow? Next week? Everyday?
Investing: Ahhh, Brenda, are ya’ sure you can keep up with all that information? I mean that’s a lot of money to risk.

Girls’ Time Out at a Tropical Destination: (Still waiting to fulfill this goal.) Hmmm, I’m not sure I’m able to join you. (What I really mean is: I’m afraid with your dementia, you’re going to be too much to handle.)

Nothing has changed, since the diagnosis except for people’s reactions; and hence the STIGMA.

Just like cancer and HIV AIDS scared us (Don’t touch, you might catch it.) we need to move beyond this stage to understanding. Lose an arm or a leg, and you’re traumatized for sure, but you can also figure out how to adjust. Lose your brain cells–now that’s a totally different situation. You lose pieces of who you are–your identity.

 

Dementia Awareness is key

Fifty-something Norman McNamara, living with Lewy body dementia in the UK, launched The Purple Angel organization for dementia awareness. It’s gotten the attention of the Prime Minister of England and people around the world.

We need to raise awareness and make sure the voices of those who walk with dementia are heard. We can save ourselves a lot of heartache in the future if we pay attention, now.

Years ago, Former First Lady Rosalyn Carter quoted a colleague when she said there are four kinds of people in this world:

1. Those who are caregivers
2. Those who will be caregivers
3. Those who were caregivers
4. Those who know caregivers.

Statistically speaking, with 36 million people worldwide living with dementia, no matter how much we try to turn the other way, we’re connected. We must create greater awareness in order for research results to be received warmly and not with the STIGMA today’s pioneers living with dementia endure.

There is one more group of people in the world:

5. Those who will need caregivers.

 

 

Which one are you? It’s only a matter of time.

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