Young-Onset Dementia - A Crisis Being Overlooked?
Did you know that the Young Dementia Network out of the U.K. shows the prevalence of dementia in the U.K. to be 7.5% of those diagnosed with dementia? That is approximately 70,800 people. (https://www.youngdementianetwork.org) That is astonishing! Of course they have a different structure to the health system that allows them to track such things.
The U.S. has a different structure to its healthcare system, so we have not tracked such figures as far as I know, but imagine… If, according to the CDC in 2019, 5.8 million people in the U.S. were living with dementia, and 5.6 million of those are over the age 65 years (remember, some of those around 65-70 years old may have been diagnosed before the aged of 65, or Young Onset Dementia). That would have left in 2019, approximately 400, 000 people at minimum diagnosed with Young Onset. (https://www.cdc.gov/aging/publications/features/Alz-Greater-Risk.html) But that number has grown over the past 5 years. In 2023, the number of people living with Alzheimer's alone was said, by the National Institutes of Health through PubMed, to be 6.7 million over the age of 65 years. But no one is really talking about the numbers of people being diagnosed today with Young Onset Dementia, which for me is of huge concern for the many out there between the ages of 30 and 64 years who are going about living their lives and feeling that it could never happen to them. (https://pubmed.ncbi.nlm.nih.gov/36918389/)
Why aren’t we talking about this more? Why aren’t we addressing the many issues that come with an early diagnosis more? This should hold a place center stage!
Most folks in their 30s are planning their career. Many will have families, possibly a mortgage to pay, even additional upper graduate education they are trying to complete or pay off. I have known many in their 40s and 50s who are in the midst of a second career or perhaps have returned to school for a different type of education. People in their 50s may be celebrating grandchildren, while people in their 40s may be sending their own children through college. So imagine that moment when life stops cold. You know something is wrong, or perhaps a loved one noticed first, or you are getting in trouble with your job or your school. People may say you’re not focusing on your tasks or that you are being lazy. You know it isn’t true! You are trying! But what should be happening isn’t, and you have no idea why.
You go for help, perhaps with a spouse or loved one, or alone. You just want your doctor to tell you that you are NOT crazy. You are hoping for a quick fix that will get you in better graces at home, work, or school before you lose something you have worked hard for. But, there is no quick fix. Testing can go on for a year, maybe 2 years and the answer you receive is not what you wanted to hear.
“I don’t know how to tell you this, but you have a neurodegenerative disorder. You have the early stages of a mild to moderate cognitive impairment (early stage dementia).” The doctor then tells you to get your affairs in order and come back in 3, 6, or even 12 months. You stand there in a cold and sterile room trying to take it all in. You have bills to pay, a job to manage, perhaps even a family that is relying on you. And you can do nothing. The world as you had known it, HAS JUST ENDED.
Now try to imagine… 25 million people going through this across our beautiful country. What are we going to do about this? How are we going to shift the stigma that this is an old age condition to presenting this as a condition that crosses all ages and all walks of life? How are we going to help create better services for those younger persons to manage this new life that they never asked to receive? The only way I know to create change is to ask the hard questions and make the most noise. So I ask them while I scream at the top of my lungs.
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