Great idea Richard! I think that the up close look many people in their 40s-60s have had in the past two decades with parents having dementia / Alzheimer's and other chronic illnesses as a result of living so much longer (thank you Statins, beta blockers and advances in hip replacement surgery!) is 1) "How do I avoid that?" and also "how do I avoid the gimmicks set to take advantage of these fears" (e.g. prevagen if you ask most any doctor) and 2) More liberal aid in dying laws so people can execute some agency over their end of life and bypass the years of poor quality of life (yes this is riddled with risks and ethical considerations but for many people like me, having a plan reduces the anxiety around saving for 24 hour care). The more good science we (those of us in our 40s-60s) see of number one - science and observable changes in others with regard to improving cognition, the less we will see a need for number 2!
I participate in two studies: Brain Health Registry and appwebstudy. Both are dealing with brain health and have tests that I take on-line every few months.
I have participated in the same study. https://www.brainhealthregistry.org/ I devoted many hours over several years taking their tests. I stopped after I concluded that this study (and other similar studies) were entirely about me giving with getting nothing back in return. I have done things like blood tests without the results being shared back to me. I've never even been sent a copy of the published papers - or even informed about the published papers. There have to be ways where people can help advance science but be treated better than mere guinea pigs (not forgetting that guinea pigs get housed and fed)
Needless to say, I very much heart the concept of a "check engine light"!
So true Theo and sad at the same time the way research is still being done like this. They often ask you to commit your time, share your story and then leave you wondering, ‘ What did I do that for?’ or ‘what ever happened to that study I helped with??’🙁
I have participated twice in a research study at Univ.NC-Chapel Hill: They are recording subject's voice and using characteristics of voice to assess dementia.
Great concept on integrating cognition monitoring with interventions! Combining DIY tools for early detection and proactive measures can significantly enhance cognitive health management. Looking forward to more insights in this series!
I like this idea! A couple suggestions: One is to include a psychologist(s) among your consultants. Psychologists are the ones physicians and attorneys refer patients to for detailed assessment of cognitive ability and changes related to. There may already be validated instruments out there that could serve as a springboard for developing what you have in mind. It is very important to also look at actual functioning in daily life ("Activities of Daily Living" in psychology and occupational therapy circles) as there can be a discrepancy--in either direction--between measured ability and and actual functioning in life. Another distinction is between normal age-related cognitive changes vs. changes that may indicate a dementing illness. Lastly, these types of data present a Pandora's box of legal issues--e.g., they could be inappropriately used to gain control of a person's finances or to dispute a w
Screening for dementia at early stages using a general purpose questionnaire or cognitive test is not such a great idea. There are too many variables affecting the results of such tools and the grey zone between normal aging and pathological mental aging too broad so that many false positives and negatives are expected and the costs are not worth the results. Maybe in some not too far away future we will have some biological markers effective enough to do this...
None the less the general idea of early recognition makes a lot of sense for those of us who will be professionally diagnosed on the borders of dementia because in the 1-3 years the disease will only start to influence our life we may prepare ourselves by incorporating al sorts of useful technologies and habits, hence increasing our cognitive reserve and chances of confronting the problems ahead with dignity. This can be called Prehabilitaion, meaning, preparing yourself to live with a chronic brain degenerative disease you have already been diagnosed with.
Great idea Richard! I think that the up close look many people in their 40s-60s have had in the past two decades with parents having dementia / Alzheimer's and other chronic illnesses as a result of living so much longer (thank you Statins, beta blockers and advances in hip replacement surgery!) is 1) "How do I avoid that?" and also "how do I avoid the gimmicks set to take advantage of these fears" (e.g. prevagen if you ask most any doctor) and 2) More liberal aid in dying laws so people can execute some agency over their end of life and bypass the years of poor quality of life (yes this is riddled with risks and ethical considerations but for many people like me, having a plan reduces the anxiety around saving for 24 hour care). The more good science we (those of us in our 40s-60s) see of number one - science and observable changes in others with regard to improving cognition, the less we will see a need for number 2!
I'm all in! I've long been known as restless adventurer...
I participate in two studies: Brain Health Registry and appwebstudy. Both are dealing with brain health and have tests that I take on-line every few months.
I have participated in the same study. https://www.brainhealthregistry.org/ I devoted many hours over several years taking their tests. I stopped after I concluded that this study (and other similar studies) were entirely about me giving with getting nothing back in return. I have done things like blood tests without the results being shared back to me. I've never even been sent a copy of the published papers - or even informed about the published papers. There have to be ways where people can help advance science but be treated better than mere guinea pigs (not forgetting that guinea pigs get housed and fed)
Needless to say, I very much heart the concept of a "check engine light"!
So true Theo and sad at the same time the way research is still being done like this. They often ask you to commit your time, share your story and then leave you wondering, ‘ What did I do that for?’ or ‘what ever happened to that study I helped with??’🙁
I have participated twice in a research study at Univ.NC-Chapel Hill: They are recording subject's voice and using characteristics of voice to assess dementia.
I might add, that they propose to use an Alexa app to assess early cognitive change.
Great concept on integrating cognition monitoring with interventions! Combining DIY tools for early detection and proactive measures can significantly enhance cognitive health management. Looking forward to more insights in this series!
Thank you for this article and all the writings & investigating this team does for us older folks.
Just saw a reference to an existing app in AARP Magazine. https://stayingsharp.aarp.org
Haven't used it yet, but it supposedly gives you a baseline to track any changes....
I like this idea! A couple suggestions: One is to include a psychologist(s) among your consultants. Psychologists are the ones physicians and attorneys refer patients to for detailed assessment of cognitive ability and changes related to. There may already be validated instruments out there that could serve as a springboard for developing what you have in mind. It is very important to also look at actual functioning in daily life ("Activities of Daily Living" in psychology and occupational therapy circles) as there can be a discrepancy--in either direction--between measured ability and and actual functioning in life. Another distinction is between normal age-related cognitive changes vs. changes that may indicate a dementing illness. Lastly, these types of data present a Pandora's box of legal issues--e.g., they could be inappropriately used to gain control of a person's finances or to dispute a w
Will.
Screening for dementia at early stages using a general purpose questionnaire or cognitive test is not such a great idea. There are too many variables affecting the results of such tools and the grey zone between normal aging and pathological mental aging too broad so that many false positives and negatives are expected and the costs are not worth the results. Maybe in some not too far away future we will have some biological markers effective enough to do this...
None the less the general idea of early recognition makes a lot of sense for those of us who will be professionally diagnosed on the borders of dementia because in the 1-3 years the disease will only start to influence our life we may prepare ourselves by incorporating al sorts of useful technologies and habits, hence increasing our cognitive reserve and chances of confronting the problems ahead with dignity. This can be called Prehabilitaion, meaning, preparing yourself to live with a chronic brain degenerative disease you have already been diagnosed with.
is this you? https://drdangottlieb.com/tag/alzheimersdementia/
No
Elder-ChatGPT uses Generative Ai with voice to detect and follow the progression of ADRD.
See how with this YouTube video: https://www.youtube.com/watch?v=DdNrXxz3wtY&t=5s
What about apps for brain health? Maybe one of them (Lumosity?) could be paired with a cognitive "tracker" app? https://www.healthline.com/health/mental-health/apps-to-keep-brain-busy#why-it-matters
Yes. Stay tuned for future installments because we have been looking at exactly that idea, as well as some other approaches.
https://www.peoplepowerco.com/caregiver
FYI