Questions We Get...
Anything and Everything
Our Family Support page draws a lot interest and hopefully provides the information you are seeking. Yet, there are topics and issues that we may have not yet gotten to...
The purpose of this page is to post some of the queries we have received and try to provide some information on the topic. While we may use some of the language of your query, we will protect your privacy and omit any identifying bits.
If you have a question or are seeking help, do send along a query to us at familysupport@the-ntg.org. We will get back to you. If your query is of broader interest we may post it here (of course, protecting your privacy).
Is there something I can quickly watch to better understand what is Alzheimer's disease?
The Alliance for Aging Research has a 3 minute video narrated by actor David Hyde Pierce, which explains the disease -- you can watch it on YouTube here.
If you have a few minutes more, be sure to watch "The Genetics of Alzheimer's", located on the same site.
Also, the NDSS sponsored a highly acclaimed overview presentation (December 6, 2023) by Dr. Michael Rafii, one of the NTG's Scientific Advisors, on Alzheimer's disease and Down syndrome. His 60-minute presentation, "Alzheimer's disease in people with Down syndrome: What we know and what we can do about it", is available on YouTube. To view the presentation, click here.
How can I connect with other parents whose son or daughter with Down syndrome in their 50s seems to having more problems?
We do provide a support group that meets once a month... it is for anyone who is a caregiver, of any age or relationship (sibs are welcome!), of an adult with an intellectual disability. Look for it on our main Family Support page.
I have been told that my doctor thinks my brother has Lewy body dementia... what is that and where can I get more information?
We have posted some basic information about Lewy body dementia on this website - click here
An excellent source of information is the Lewy Body Dementia Association - their contact information is on our Lewy Body Dementia page.
My older sister with Down syndrome came to live with us a few months ago. I noticed that she seems to being having some problems and I am looking for some ideas as a new caregiver. Got any tips?
We would refer you to a presentation on YouTube that was given by Dr. Julie Moran, who covers some of the areas that come up in caregiving, such as communicating, managing time, and addressing other features. You can watch it here.
My wife seems always to be stressed out. Our oldest son, who has an intellectual disability and other conditions and lives with us, is having more problems since he turned 50. My neighbor suggested we look into stress reduction. Where can we find some useful materials?
Many dementia related organizations have produced some helpful materials designed to help families like yours. One source is the Alzheimer's Association... try this page on 'Caregiver Stress'. Another resource is the Mayo Clinic's 'Stress Management' page. These are a start...
I have been hearing about 'biomarkers' and how they may be helpful in diagnosing dementia... where can I find out more about them?
The National Institute on Aging has released a brief explainer in video form that will give you a basic understanding of biomarkers.
The video is available via this link.
Where can we find some basic information on mental health as our son seems different recently?
You might find the information about mental health provided by Dr. Brian Chicoine, which is on the website of the Down Syndrome Resource Foundation, very useful and informative. You can read the full interview with him at the DSRF site.
I can't attend one your two-day workshops, can I get the same information from your website?
We are working on creating brief individual learning modules that you can listen to and learn about a specific topic right on your computer. They are not yet ready, but stay tuned.
I've been hearing about how a healthy lifestyle can help minimizing cognitive problems in older age... what is that all about?
The federal government is promoting a 'healthy brain initiative,' which drawn from research shows that leading a healthy life can help minimize risk for later cognitive problems and possibly dementia. Activities that have been identified that reduce the risk for cognitive complications later in life include:
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Eating more fruits and vegetables
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Keeping a stable blood sugar level
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Limiting intake of ultra-processed foods
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Maintaining a healthy blood pressure
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Not smoking
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Getting enough sleep
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Staying socially engaged
The NTG is working with the University of Illinois Chicago on a CDC-funded project on Brain Health and Intellectual Disability. Read more about it here.
I have heard that some dementias are related to genetics. Is there a source for some information on the genetic connection?
The National Institute on Aging has released a brief video using animation that explains the role of genetics in dementia. You may find this very informative.
The video is available via this link.
Over the years I have tried to get my adult son to brush his teeth, but he often forgets and now has problems with his gums. Will this be a problem as he gets older?
Not brushing can lead to oral health problems as harmful bacteria can build up around his teeth and gums and might lead to 'periodontal disease'. This gum disease can lead to infection and inflammation in the gums and bone that surround his teeth. More concerning is that periodontal disease can lead to adverse health conditions, such as diabetes, heart disease, respiratory inflections, and dementia.
A brief informative article on the effects of gum disease and other disease conditions was published in the New York Times. The article is available via this link.
The FDA recently approved a new medication for treating Alzheimer's disease. My son has Down syndrome ... what should I know about it?
The medication, Leqembi, has been found to be useful in slowing down the decline associated with Alzheimer's disease, but has not yet been proven safe for use by adults with Down syndrome. Work to make it available is pending - see our page on Leqembi. In the meantime, you may find informative this fact sheet from the University of Minnesota.
Open the fact sheet via this link.