As you read in my previous post “What is Alzheimer’s disease,” there is a sub-type of AD known as young-onset dementia. This name refers to dementia that begins before age 65.
Tag Archives: young-onset dementia
How are Niemann-Pick disease type C (NPC) and dementia related?
This information comes from Alzheimer’s Society, a wonderful organization based out of the UK. They are one of my go-to sources for information and I highly recommend taking a look around their website. They offer the information on their website to be freely used by others, so I am posting the information in full. You can access the same article on their website as well as resources on dementia by clicking on the title, below.
But first, a little bit from the University of Notre Dame:
The National Institutes of Health refers to Niemann-Pick disease type C as “childhood Alzheimer’s” because of similarities in the brains of NPC and Alzheimer’s disease patients. Symptoms can include deterioration of memory and balance, lung and liver failure, delayed motor development, and seizures. The disease usually appears in early childhood, leading to neurological problems that are typically fatal.
From the Addi & Cassi Fund webpage (the twins with NPC pictured, above):
Every person in the world is born with the Niemann Pick Type C gene and could not live without it. The NPC1 gene is located on Chromosome 18 and the gene regulates human cholesterol metabolism at the cellular level. We were born with major problems on this cholesterol gene which in turn causes our fatal disease.
Some doctors believe Niemann Pick Type C and Alzheimer’s could be connected due to cholesterol and lipid issues (see The Scientist Magazine article, November 2008) while virus researchers have discovered that the Niemann Pick Type C gene helps both HIV-AIDS and Ebola infect humans. We are told by top scientists that because our cholesterol gene does not work, we can’t get infected with many viruses that infect people who have healthy functioning NPC genes.
According to Dr. Francis S. Collins, Director of the NIH, “While many of the genes we will initially be pursuing are responsible for rare disorders, what we learn from rare disorders often has profound consequences for our understanding of more common conditions.”
When I was writing my thesis on technologies for dementia, the youngest case of dementia that I found recorded was in a 6 year old girl who had Niemann-Pick disease type C – you can read about it in this article from Alzheimer Society, starting on page 16. You can also read one of my other posts about a 12-year old girl with this disorder here (og på dansk her). Continue reading
34 years old, mother of 3, and early onset familial Alzheimer’s disease
This story comes to us from the Montgomery Advertiser.
Carrie Richardson drives her son Jacob, 12, to a friend house as her daughters, Rylee, 7, and Hannah, 14, come along for the ride on Friday. (Photo: Albert Cesare / Advertiser)
Advocating for better treatment of individuals with dementia
This post is from Dementia Alliance International (DAI), who promote education and awareness about dementia. The original text may be slightly modified for this post.
Kate Swaffer’s keynote speech highlights some of the most relevant issues in dementia care and living with dementia: the need to address the individual, not just their symptoms; human rights issues; balance in dementia research funding; rehabilitation and palliative care in dementia care plans; better diagnostics; delaying institutionalization; inclusion; breaking stigma – I mean, wow, she really gave a great speech! She also touches on two other important topics: psychosocial stimulation and maintaining work and contribution to society, mentioning her own experience and drive to continue contribution through advocacy.
She is a champion in breaking down stigma and raising awareness for people with dementia, particularly young-onset dementia (before age 65). Head on over to her website, have a read, and sign up to follow her.
Doctor Dementia and the Dementia Adventure 