The Alzheimer’s Society and Alzheimer’s Association have lots of information on caring for people with dementia but no resources on their website for people caring for children, teens and young adults suffering from dementia. There are many kids who have dementia as a result of rare diseases even though most people think dementia strikes the elderly.
I know it’s hard to believe that six year old kids like Addi and Cassi have dementia but they do. It can be very difficult to deal with dementia in children as they don’t remember (or can’t learn) that burners are hot, stairs are steep or cars come up and down the street. Addi and Cassi were once potty trained and knew their nursery rhymes but then forgot what they learned as a result of their fatal genetic cholesterol condition that is destroying their brains.
As you can imagine, the thought of your children forgetting who you are is very distressing to parents. There is a lot of grief and sadness and yet little support to deal with your kids losing their minds.
Here are some conditions in children that involve dementia:
- Alexander disease
- Autism (Infantile)
- Batten disease
- Canavan disease
- Juvenile Huntington’s disease
- Metabolic diseases
- Niemann-Pick Type C
- Subacute-sclerosing Panencephalitis (SSPE)
- Tay Sachs disease
The Niemann Pick Disease Group in the UK has written a guide to help parents, teachers and care professionals understand dementia in young people. But we need more resources written and more educational efforts to bring attention to dementia in the young. For example, how can school children cope with having a classmate who has a dementing disease like Niemann Pick Type C. Niemann Pick Type C children do have best friends that they may not remember in the future as their fatal condition progresses.
I am going to contact the Alzheimer’s Foundations to see if they are willing write a story about kids and dementia. Maybe if people knew this was happening to children they would care more about dementia or give more to dementia research.
I have been saying this for close to two years now about cholesterol and dementia being linked but no one seems to listen. Now a Kaiser Permanente study published in Dementia and Geriatric Cognitive Disorders has hits the news showing that what’s good for your heart is good for your brain. Really? I guess this is a surprise to the Alzheimer’s Association?
Maybe scientists studying heart disease and Alzheimer’s will read Brown and Goldstein’s recent paper in Cell about the Niemann Pick Type C gene on Chromosome 18. I wonder if the Alzheimer’s Association even knows who Brown and Goldstein are? In case they don’t know, Brown and Goldstein are considered the “cholesterol kings” and in 1985 they won the Nobel Prize for their discovery of the LDL cholesterol receptor. The entire multi-billion dollar statin drug industry was build off of their cholesterol research — the same drugs people are being encouraged to take to possibly ward off Alzheimer’s.
Why are Brown and Goldstein studying a cholesterol gene we are all born with called Niemann Pick Type C located on Chromosome 18 and why are they publishing papers about it? As it turns out, when this gene is severely disrupted as it is in my identical twin 5 year old identical twin girls, it causes a fatal cholesterol disorder and childhood dementia. This genetic disruption only affects 500 children in the world yet these children could hold the keys to cholesterol metabolism in the human body.
Brown and Goldstein’s Cell paper (pay particular attention to Figure 6!) is probably the most important NPC paper since the discovery of the Niemann Pick Type C gene by Dr. Peter Penchev and National Institues of Health over 12 years ago. Many of the answers for cholesterol and dementia have been right in front of us for years — we only need to look deeper into cholesterol disruptions and genes like Niemann Pick Type C. After all, it’s a gene every person is born with and it is involved in cholesterol metabolism and could impacts many pathways in the body.
Finally, meet Addi and Cassi’s and see their favorite products on our home page – many are mentioned in this article from plant sterols to red rice yeast. Our battle against the killer cholesterol continues. We hope you join our fight.
Here is the story:
(CNN – Aug. 5) — People as young as 40 with borderline or high cholesterol levels are at increased risk for developing Alzheimer’s disease or vascular dementia, said a Kaiser Permanente study released Tuesday.
Researchers tracked nearly 10,000 people for four decades, starting when the participants were between 40 and 45. After controlling for weight, hypertension and diabetes, researchers discovered a significant link between borderline-high cholesterol and dementia, according to the study.
Although previous studies have linked heart and brain health, researchers said this study is the first to examine the association between borderline cholesterol levels and dementia.
And although dementia does not typically strike until later in life, “it’s a disease of a lifetime,” said Rachel Whitmer, research scientist at Kaiser Permanente and senior author of the study. “We need to think about it like we do for cardiovascular disease.”
The study found that participants who had high cholesterol, or a value of 240 or more, had a 66 percent greater risk of developing Alzheimer’s disease later in life. People with borderline-high cholesterol, between 200 and 239, had a 25 percent spike in risk.
“The terminology can really be confusing to people who don’t necessarily associate borderline elevations with substantial increased risks,” said Dr. Gregg Fonarow, a cardiologist and professor of medicine with the UCLA Division of Cardiology.
More than 106 million Americans have borderline-high cholesterol levels, according to the American Heart Association.
“If anyone was ever on the fence about controlling their lipid profiles, this could be further reason to bring your numbers to an optimal level,” Fonarow said.
The first step to lowering high cholesterol is to modify a person’s health habits.
“When I meet with patients, I emphasize to them that there’s not one single thing they can do to improve their lipids. They have to think of their whole life,” said Dr. Larry Bergstrom, director of the Integrative Medicine Program at the Mayo Clinic in Scottsdale, Arizona.
Experts agree that a three-pronged approach of daily exercise, stress reduction and nutrition can naturally lower levels. A diet rich in olive oil, nuts, whole grains, fiber, fresh fruit, vegetables and a limited amount of red meat is best, according to the Mayo Clinic.
“These people were between 40 and 45 years old when their cholesterol was measured. That is many years before one would get dementia. This is a modifiable risk factor that can be changed,” Whitmer said.
Supplements such as plant sterols and red yeast rice are also effective when taken in conjunction with a healthy diet. A recent study showed that red yeast rice decreased the body’s production of cholesterol and lowered a person’s LDL, or bad, cholesterol by 27 percent over a three-month period.
“If someone changes their diet, exercises and works on stress, supplements could be what pushes them over the edge and helps complete the picture and lower their levels effectively,” Bergstrom said.
More traditional treatments such as prescription medications are also an option for those people who eat a heart-healthy diet and exercise daily, but still need help lowering their overall cholesterol. “If every individual knows their optimal lipid levels and can control them, it will pay large health dividends,” Fonarow said.
Although the Kaiser study does not show proof that lowering cholesterol definitively lowers the risk for Alzheimer’s disease as well, many doctors agree that nothing adverse can come of reducing high cholesterol levels.
“What’s good for your heart is good for your brain,” Whitmer said. “That really captures all the timely messages about dementia science.”
Saving Our Brains
We’re 4 year old identical twins, Addi and Cassi Hempel. We recently went on a trip to Detroit to Children’s Hospital Michigan with our Mom, Aunt and Grandma to have PET scans done on our brains. We are suffering from a rare and progressive neurological disease called Niemann Pick Type C. If we don’t do something about it, we’re going to lose our minds.
Our PET scans revealed that just like some Alzheimer’s patients, we have a glucose metabolism problem in the frontal lobes of our brains. This causes dementia. One of us (Cassi) has an inflammation spot in the middle of our brain, in the parietal lobe and basal ganglia area. This is an area of the brain where Parkinson’s patients are often impacted.
We ask that you take a moment to learn more about us and our fight against NPC. We have posted our brain videos, report and scans for the world to see. We hope that through a view into our brains, we can bring answers and treatments not only for ourselves but for others who suffer from neurological conditions of all types.
Watch our Brain Video
Read our Brain Report