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Song of Joy Song of Joy is offline
 
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Early Onset Dementia in Teenager?
Old 12-26-2020, 06:53 PM
 
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I will be meeting with a family in a few weeks and the mom says that a physician has diagnosed her 14 year old daughter with early onset dementia. She wants me to help tutor her.

I haven't met the family yet but I'm at a total loss. I have 3 thoughts:

1. Ask the mom to get a 2nd opinion and hope the doctor is wrong.
2. Attempt to teach this girl, using lots of kinesthetic and multi-sensory methods and hope for the best.
3. Decline taking this student on as a client.

At this point I feel like I should start working with this student and re-evaluate after 6 - 8 weeks to see if I'm helping her or wasting the family's money which apparently is in short supply.

The mom also suspects the daughter might have ADHD/ADD and/or Dyslexia. I know what to do if she has dyslexia and I thought I would start with something very narrow like spelling intervention to see if the student can retain information from week to week.

I feel devastated for the family. How can a person handle a diagnosis like this for a teen? Can anyone point me in a direction of research or intervention? My searches fail to produce anything for teenage dementia interventions and most of the interventions are for life skills and to retain function not actual new learning

By the way, the daughter hasn't been told of this diagnosis and I have no intention of telling her or doing anything that would let the cat out of the bag since I feel that is the mom's place.

Help.


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Old 12-26-2020, 08:20 PM
 
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Is there a specific condition, like Huntington’s disease? I would think in someone so young there would be some specific condition at play, not just a general diagnosis of dementia. There are plenty of disorders that cause increasingly impaired cognition, and many can be triggered by changes such as puberty or a disorder such as ADHD. I would wonder, but wouldn’t ever ask, what events led to that diagnosis. What all was ruled out?

Before I took the child as a client, I’d want to know if she receives any special services at school and what goals the parent has for the child. I’d also ask what types of concerns led the parent to get a tutor. Also, does the dementia present as memory issues, motor issues, or personality issues? A mixture?
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Old 12-26-2020, 08:33 PM
 
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Thinking about the financial implications...

With a disabling condition, the teen would likely qualify for Social Security Disability payments.

Also if she doesn't currently have an IEP, the mother should formally request testing and services. The tutoring she may need should be provided at no cost by her school district.
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Old 12-26-2020, 08:43 PM
 
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Thank you for your responses.

The daughter has been in public school and has had an IEP for a number of years but was doing very poorly at online learning - overwhelmed and not doing too much. The mom decided to begin homeschooling in January.

I don't know about SSI for her although the mom is receiving some funds she can use for tutoring but not for curriculum. The mom is pretty desperate.
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Old 12-26-2020, 08:59 PM
 
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Wow, I had no idea that was even a thing. I would see if you can get mom to sign a release of records so you can talk to the doctor directly and get some information about how helpful the tutoring would be. Then use that information to have an honest conversation with mom about what her goals are and make sure you're in agreement. That way you can be sure mom isn't throwing money away/having hopes that aren't medically possible. Or, decline to take her on as a client if you don't feel comfortable with the scenarios the Dr. lays out or you don't feel that mom is in total agreement with you as far as goals and potential outcomes for the tutoring.


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Not an answer, just some thoughts...
Old 12-27-2020, 05:15 AM
 
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Moms do not always understand what the doctor says and, frankly, do not always tell the truth. Dementia in a 14-year-old would be extremely rare--one reason you are having trouble finding research/intervention techniques.

It is also "interesting that mom "suspects" ADHD/ADD and/or Dyslexia.

From another perspective, it sounds like mom is more interested in diagnosing and explaining the problem rather than solving it--assuming there is a problem. Is mom looking for a tutor because her daughter "has" dementia and maybe ADHD and maybe dyslexia... or is she looking for a tutor because her daughter is struggling in school? There's a HUGE difference in those two questions.

You might be treating Mom, not the daughter.

(And in fairness to Mom, society and public education is quick to diagnose and label kids--I've seen parents beg for a diagnosis so the kid becomes eligible for a 504 or an IEP. I'll never forget the parent who was disappointed when her child didn't score high enough on the spectrum... and some others who actually seemed to hope there was something wrong. How do you spell "Munchausen?")

In a sense, this is a "not enough information" question. Personally, I'd stay away from asking Mom to get a 2nd opinion... I would be inclined to avoid the topic of learning disabilities almost entirely and focus on teaching and learning. I'd try to get more information about her performance in school--perhaps permission to talk with her teacher(s). A trial period of tutoring might be part of a plan.

I realize my thoughts may sound jaded, but problem-solving sometimes requires a dispassionate approach and a 360 degree walk around the situation.
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Fwiw
Old 12-27-2020, 06:30 AM
 
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https://www.alzheimers.org.uk/about-...#content-start

Rare doesn't mean never. Would I feel better if mom had the kid diagnosed at a place like U of Mich pediatric movement disorder clinic, as opposed to a granola crunchy naturopath/chiropractic combo in the upscale strip mall? Yeah, I would. That's my bias showing.

Call your local Alzheimer's association and ask for resources. They might be able to hook you up with whatever medical center would diagnosis this in children in your area.

I'd assume mom has a solid diagnosis, unless proven other wise. There are diseases like Batten disease, Huntington, and Mitochondrial disorder that are bears to get a solid diagnosis. So parents get hassled for being drama queens and fishing for a diagnosis. Pediatric neurological disorders are horrible to get a diagnosis because you are looking at usually university hospitals on one of the coasts. It's not easy getting access.

You can aways give the family a trial run to see how you feel. Yeah, once the brain starts failing, you are grasping to keep skills rather than powering through to gain new ones. The other thing is, can you handle watching this kid's decline?

My friend's child had Battens disease. He has since died. Typically it happens very early on. His started at age 11. Neurological disorders are weird beasts, and pediatric disorders are even weirder. The kid was diagnosised with everything under the sun, until the big deal specialist figured it out.

I know early onset dementia occurs in people with Downs syndrome. Maybe a deep dive Google might turn something up that is useful. Especially since that patient population is in some sort of school until age 18-21
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Old 12-27-2020, 07:34 AM
 
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Thank you all so much for your responses. I believe this mom has done everything she can with her limited resources. That's one of the frustrating parts - those with more money can uncover more stones.

I will double check with the mom, but I believe she took her daughter to Seattle for diagnosis.

I'll reach out to the Alzheimer's Association and see what I can uncover there.

If I'm uncertain that I can truly help, I could offer a trial period for free and maybe the best help I can do is find places to refer the mom.

Once again, your perspectives are much appreciated and gave me a place for my spinning tires to maybe grab in.

I'll also tutor the mom's 3rd grade daughter who is reading at a 1st grade level, but I'm on solid ground there with lots of training on how to help kids with reading issues, especially dyslexia. The 3rd grader doesn't have an official diagnosis. It's a real conundrum in our state because the pediatricians say dyslexia is an educational issue so they don't diagnose. The schools say it's a neuropsychology issue so they won't diagnose, and the neuropsychologists charge $2,000 - $3,500 in our state and it's rarely covered by insurance so poor families are stuck just doing the best they can. So that's where I come in. You all would be shocked at how little I charge given my training, but helping this sector of the population is turning into my retirement passion. So I really value the experience and advice you all have given me. Thank you.
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Old 12-27-2020, 11:40 AM
 
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I don't have anything to add, OP. I just wanted to let you know it warms my heart that you are so thoughtful about this situation and are willing to not take the job if you don't feel that you can help.
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One last little thing...
Old 12-28-2020, 07:55 AM
 
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I know parents who didn't tell their kids all the horrible nitty-gritty of the diseases they have right at the start. At 14, a girl teen can be a handful already without the bonus round of a chronic, it's just going to get worse until you die disease. There's no going back to baseline.

So mom is hoping for some sort of normal. I'd shut the hell down at 14, if I found out I'm losing my brain function in bits and chunks. Why the heck do anything? Like school.

And a huge shout out teachers and support staff who work with kids that have diseases like Tay Sachs, Battens, Huntington, Mitochondrial disorder...etc You give the families and children some sort of normal, when the base line is so fleeting. That is not easy.


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