I am a former TV journalist, not a scientist, nor a neurologist or a gerontologist. Why do my per... more I am a former TV journalist, not a scientist, nor a neurologist or a gerontologist. Why do my personal observations warrant a place in a scientific journal? Let's just say I have put in more than a decade of "on the job training" and "real time testing" of the latest therapies designed to slow the progression of a disease that will ravage the baby boom generation. Alzheimer's disease (AD) is a pending epidemic greater and deadlier than a flu pandemic. No one survives its onslaught. The blessing of our greater longevity turns perverse and clouded by the growing risk of Alzheimer's disease. Studies show that those who get the disease have the bio marker in them between 10 to 20 years before exhibiting any symptoms. We are ticking time bombs without even knowing it. How ironic that the generation that wouldn't trust anyone over age 30 and still embraces youth is now succumbing to a scourge linked to age. While you are in the laboratories and clinics searching for new AD therapies and protocols, I am at the bedside trying to manage symptoms and grotesque behaviors, pained by the cruel realities of a disease for which there is currently no cure. At night I slip between the bed covers, careful not to disturb the stranger lying there. His eyes are closed, but I take no chances. He is aware of me but does not know me. I turn into him and begin to breathe in a slow steady rhythm that mesmerizes him into a temporary slumber. I have learned to succeed where drugs have failed. The reprieve will be short and the night long. Soon he will wake screaming and flailing his arms as if fighting off demons. The terror of his world is my world: I am his captive and victim to a once brilliant, but now demented mind. Any challenge is self-defeating and useless; I play to his realities in order to survive. Exhausted, I drift off only to re-awaken and find
Genetic engineering & biotechnology news, Oct 15, 2013
he 2013 Geoffrey Beene Global Neuro Discovery Challenge * on male/female differences in the presy... more he 2013 Geoffrey Beene Global Neuro Discovery Challenge * on male/female differences in the presymptomatic, early symptomatic, and late dementia stages of Alzheimer's Disease (AD), with $100,000 in prize awards, attempts to leverage large sets of clinical data and novel analytical approaches.
Background: Depression and Alzheimer's disease (AD) are associated, however the precise nature of... more Background: Depression and Alzheimer's disease (AD) are associated, however the precise nature of the relationship remains unclear. This study investigated prospectively the extent to which high levels of amyloid-b (Ab) in cognitively normal (CN) older adults was associated with the development of screen-positive depression or changes in specific depressive symptoms over 72 months. Methods: Older adults (n ¼ 585) from the Australian Imaging Biomarkers and Lifestyle (AIBL) study cohort, who were CN and did not have depression at enrolment, were included in the present study. All participants had undergone positron emission tomography (PET) neuroimaging for Ab and were classified as Ab+ (n ¼ 136) or AbÀ (n ¼ 449) on the basis of PET results. The Geriatric Depression Scale-15 (GDS-15) was used to measure depressive symptoms and define screen-positive depression (GDS>5) at each AIBL assessment (Baseline, 18, 36, 54, and 72 months). All participants had completed at least two assessments within the study period. Results: The incidence of screen-positive depression in the total sample over 72 months was low (1.8%) and hazard ratios showed this was not different between Ab+ and Ab-groups. Categorical principle component analysis (CATPCA) identified an apathy-anxiety symptom cluster that increased slightly over time in the AB+ group (Cohen's d ¼ 0.28). Screen-positive depression was not associated with clinical disease progression in either Ab group. Conclusions: In cognitively normal older adults Ab+ is associated with a very subtle increase in apathy-anxiety symptoms over time. However, in the present sample there is no evidence for an increased incidence of screen-positive depression in Ab+ CN older adults, nor does the co-occurrence of screen-positive depression and Ab+ increase risk of progression to MCI or dementia.
Barriers to the early detection of mild cognitive impairment (MCI) and dementia can delay diagnos... more Barriers to the early detection of mild cognitive impairment (MCI) and dementia can delay diagnosis and treatment. myMemCheck® was developed as a rapid free cognitive self-assessment tool that can be completed in the practice setting or at home to identify older adults that would benefit from a more comprehensive cognitive evaluation for MCI and dementia. Two prospective cross-sectional studies (N = 59; N = 357) were conducted to examine the psychometric properties and clinical utility of myMemCheck®. myMemCheck® evidenced adequate reliability (test-retest, r = 0.67) and strong construct validity (η2 = 0.29, discriminating normal, MCI, dementia). Receiver operating characteristic analysis evidenced an optional myMemCheck® cut score for identifying older adults with MCI or dementia (sensitivity = 0.80, specificity = 0.67, positive predictive value = 0.91, negative predictive value = 0.43). myMemCheck® explained 25% of cognitive status beyond basic patient information. We provide spec...
during the 36 months preceding and the 12 months following the first AD diagnosis for the AD coho... more during the 36 months preceding and the 12 months following the first AD diagnosis for the AD cohort or a matched date in the control cohort. Mean costs among matched AD and control cohorts were compared via bivariate analyses (a1⁄40.05). Results: A total of 76,102 AD patients and matched control patients were included in the analysis. The matched cohorts were 62% female and had a mean age of 83 years. In the first 12 months following diagnosis, mean annual total costs among the AD cohort were $28,048, which was nearly double the costs among controls ($15,166; p<0.001). During the 36-month baseline period, mean per-person annual total costs were also significantly higher among the AD cohort compared to the control cohort ($16,691 vs. $12,819; p<0.001). Baseline emergency department costs and inpatient admission costs showed the greatest relative difference with AD patients incurring costs 2.04, and 1.44 times higher than controls, respectively. Conclusions: These results demonstrate that AD patients incur significantly higher costs, particularly in the first year after diagnosis, but also over three years prior to diagnosis compared to similarly aged enrollees without AD. Further characterizing the healthcare needs during this time preceding diagnosis may help inform early disease management strategies.
More than 16 million Americans provide unpaid care for someone with Alzheimer’s disease and relat... more More than 16 million Americans provide unpaid care for someone with Alzheimer’s disease and related dementias (ADRD). During the COVID-19 pandemic, unpaid caregivers experienced increased chronic severe stress from widespread closures and social distancing. We conducted eight surveys from March 2020 to March 2021 among a cohort of over 10,000 individuals. Cross-sectional analysis was conducted to investigate frequency and ratios of groups reporting increased stress across surveys. A longitudinal analysis was also performed with the 1,030 participants who took more than one survey. We found a growing crisis among dementia caregivers: By Survey 8, current caregivers reported 2.9 times higher stress levels than the comparator group. By that time, 64% of current caregivers reported having multiple stress symptoms typically found in people experiencing severe stress. Both analyses reported increased levels of stressors over time that were more associated with certain caregiver groups. Ou...
A lzheimer's disease (AD) is a progressive neurodegenerative disorder that devastates the brain-a... more A lzheimer's disease (AD) is a progressive neurodegenerative disorder that devastates the brain-affecting cognitive function, memory, visual spatial perception, abstract thinking, and eventually loss of bodily functions. Based on the latest Rand report on dementia and AD, the current costs in lives lost, families shattered, careers disrupted, and financial futures ruined is much too high. And with the projected increases in the number of individuals affected by AD and related dementias in coming years, the global costs become unendurable and insupportable. Many pharmaceutical companies have dismantled their AD treatment discovery programs because of failed experimental therapeutics in costly Phase III clinical trials. Recently, a paradigm shift to focus earlier in the disease process to include preclinical populations with mild cognitive impairment (MCI) due to AD has emerged. 1-3 It is antici
Background The What Matters Most (WMM) study was initiated to evaluate symptoms, AD-related impac... more Background The What Matters Most (WMM) study was initiated to evaluate symptoms, AD-related impacts, treatment-related needs, preferences, and priorities among individuals with or at risk for Alzheimer’s disease (AD) and their care partners. The objective of this qualitative study phase was to identify a comprehensive set of concepts of interest that are meaningful to individuals across the AD continuum. Methods Interviews were conducted with 60 clinically referred individuals and care partners across 5 AD stages (n = 12 each): group 1 (non-clinically impaired individuals with AD pathology), group 2 (individuals with mild cognitive impairment and AD pathology), group 3 (individuals with mild AD), group 4 (individuals with moderate AD and their care partners), and group 5 (care partners of individuals with severe AD). Interviews were conducted by experienced interviewers, audio-recorded, and transcribed. Dominant trends were identified in each interview and compared across subsequent...
The specific objective of the COVID-19 Survey series is to understand the “real time” burdens and... more The specific objective of the COVID-19 Survey series is to understand the “real time” burdens and challenges of people living with dementia in this new restrictive environment. Overall, the main purpose of the Study is to develop an understanding over time, through multiple research projects, about “what matters most” to individuals with and/or affected by Alzheimer’s disease and other dementias, including caregivers, and those concerned about brain health.
... frey Kaye, Ara S. Khachaturian, Edward Koo, Lew Kuller, Richard Mohs, Marcelle Morrison-Bogor... more ... frey Kaye, Ara S. Khachaturian, Edward Koo, Lew Kuller, Richard Mohs, Marcelle Morrison-Bogorad, Tony Phelps, Judes Poirier, Barry Reisberg, Marwan Sabbagh, David P. Salmon, Mary Sano, Dale Schenk, James Simpkins, Ste-phen Snyder, Ronald G. Thomas, ...
This document proposes an array of recommendations for a National Plan of Action to accelerate th... more This document proposes an array of recommendations for a National Plan of Action to accelerate the discovery and development of therapies to delay or prevent the onset of disabling symptoms of Alzheimer's disease. A number of key scientific and public-policy needs identified in this document will be incorporated by the Alzheimer Study Group into a broader National Alzheimer's Strategic Plan, which will be presented to the 111th Congress and the Obama administration in March 2009. The Alzheimer's Strategic Plan is expected to include additional recommendations for governance, family support, healthcare, and delivery of social services.
I am a former TV journalist, not a scientist, nor a neurologist or a gerontologist. Why do my per... more I am a former TV journalist, not a scientist, nor a neurologist or a gerontologist. Why do my personal observations warrant a place in a scientific journal? Let's just say I have put in more than a decade of "on the job training" and "real time testing" of the latest therapies designed to slow the progression of a disease that will ravage the baby boom generation. Alzheimer's disease (AD) is a pending epidemic greater and deadlier than a flu pandemic. No one survives its onslaught. The blessing of our greater longevity turns perverse and clouded by the growing risk of Alzheimer's disease. Studies show that those who get the disease have the bio marker in them between 10 to 20 years before exhibiting any symptoms. We are ticking time bombs without even knowing it. How ironic that the generation that wouldn't trust anyone over age 30 and still embraces youth is now succumbing to a scourge linked to age. While you are in the laboratories and clinics searching for new AD therapies and protocols, I am at the bedside trying to manage symptoms and grotesque behaviors, pained by the cruel realities of a disease for which there is currently no cure. At night I slip between the bed covers, careful not to disturb the stranger lying there. His eyes are closed, but I take no chances. He is aware of me but does not know me. I turn into him and begin to breathe in a slow steady rhythm that mesmerizes him into a temporary slumber. I have learned to succeed where drugs have failed. The reprieve will be short and the night long. Soon he will wake screaming and flailing his arms as if fighting off demons. The terror of his world is my world: I am his captive and victim to a once brilliant, but now demented mind. Any challenge is self-defeating and useless; I play to his realities in order to survive. Exhausted, I drift off only to re-awaken and find
Genetic engineering & biotechnology news, Oct 15, 2013
he 2013 Geoffrey Beene Global Neuro Discovery Challenge * on male/female differences in the presy... more he 2013 Geoffrey Beene Global Neuro Discovery Challenge * on male/female differences in the presymptomatic, early symptomatic, and late dementia stages of Alzheimer's Disease (AD), with $100,000 in prize awards, attempts to leverage large sets of clinical data and novel analytical approaches.
Background: Depression and Alzheimer's disease (AD) are associated, however the precise nature of... more Background: Depression and Alzheimer's disease (AD) are associated, however the precise nature of the relationship remains unclear. This study investigated prospectively the extent to which high levels of amyloid-b (Ab) in cognitively normal (CN) older adults was associated with the development of screen-positive depression or changes in specific depressive symptoms over 72 months. Methods: Older adults (n ¼ 585) from the Australian Imaging Biomarkers and Lifestyle (AIBL) study cohort, who were CN and did not have depression at enrolment, were included in the present study. All participants had undergone positron emission tomography (PET) neuroimaging for Ab and were classified as Ab+ (n ¼ 136) or AbÀ (n ¼ 449) on the basis of PET results. The Geriatric Depression Scale-15 (GDS-15) was used to measure depressive symptoms and define screen-positive depression (GDS>5) at each AIBL assessment (Baseline, 18, 36, 54, and 72 months). All participants had completed at least two assessments within the study period. Results: The incidence of screen-positive depression in the total sample over 72 months was low (1.8%) and hazard ratios showed this was not different between Ab+ and Ab-groups. Categorical principle component analysis (CATPCA) identified an apathy-anxiety symptom cluster that increased slightly over time in the AB+ group (Cohen's d ¼ 0.28). Screen-positive depression was not associated with clinical disease progression in either Ab group. Conclusions: In cognitively normal older adults Ab+ is associated with a very subtle increase in apathy-anxiety symptoms over time. However, in the present sample there is no evidence for an increased incidence of screen-positive depression in Ab+ CN older adults, nor does the co-occurrence of screen-positive depression and Ab+ increase risk of progression to MCI or dementia.
Barriers to the early detection of mild cognitive impairment (MCI) and dementia can delay diagnos... more Barriers to the early detection of mild cognitive impairment (MCI) and dementia can delay diagnosis and treatment. myMemCheck® was developed as a rapid free cognitive self-assessment tool that can be completed in the practice setting or at home to identify older adults that would benefit from a more comprehensive cognitive evaluation for MCI and dementia. Two prospective cross-sectional studies (N = 59; N = 357) were conducted to examine the psychometric properties and clinical utility of myMemCheck®. myMemCheck® evidenced adequate reliability (test-retest, r = 0.67) and strong construct validity (η2 = 0.29, discriminating normal, MCI, dementia). Receiver operating characteristic analysis evidenced an optional myMemCheck® cut score for identifying older adults with MCI or dementia (sensitivity = 0.80, specificity = 0.67, positive predictive value = 0.91, negative predictive value = 0.43). myMemCheck® explained 25% of cognitive status beyond basic patient information. We provide spec...
during the 36 months preceding and the 12 months following the first AD diagnosis for the AD coho... more during the 36 months preceding and the 12 months following the first AD diagnosis for the AD cohort or a matched date in the control cohort. Mean costs among matched AD and control cohorts were compared via bivariate analyses (a1⁄40.05). Results: A total of 76,102 AD patients and matched control patients were included in the analysis. The matched cohorts were 62% female and had a mean age of 83 years. In the first 12 months following diagnosis, mean annual total costs among the AD cohort were $28,048, which was nearly double the costs among controls ($15,166; p<0.001). During the 36-month baseline period, mean per-person annual total costs were also significantly higher among the AD cohort compared to the control cohort ($16,691 vs. $12,819; p<0.001). Baseline emergency department costs and inpatient admission costs showed the greatest relative difference with AD patients incurring costs 2.04, and 1.44 times higher than controls, respectively. Conclusions: These results demonstrate that AD patients incur significantly higher costs, particularly in the first year after diagnosis, but also over three years prior to diagnosis compared to similarly aged enrollees without AD. Further characterizing the healthcare needs during this time preceding diagnosis may help inform early disease management strategies.
More than 16 million Americans provide unpaid care for someone with Alzheimer’s disease and relat... more More than 16 million Americans provide unpaid care for someone with Alzheimer’s disease and related dementias (ADRD). During the COVID-19 pandemic, unpaid caregivers experienced increased chronic severe stress from widespread closures and social distancing. We conducted eight surveys from March 2020 to March 2021 among a cohort of over 10,000 individuals. Cross-sectional analysis was conducted to investigate frequency and ratios of groups reporting increased stress across surveys. A longitudinal analysis was also performed with the 1,030 participants who took more than one survey. We found a growing crisis among dementia caregivers: By Survey 8, current caregivers reported 2.9 times higher stress levels than the comparator group. By that time, 64% of current caregivers reported having multiple stress symptoms typically found in people experiencing severe stress. Both analyses reported increased levels of stressors over time that were more associated with certain caregiver groups. Ou...
A lzheimer's disease (AD) is a progressive neurodegenerative disorder that devastates the brain-a... more A lzheimer's disease (AD) is a progressive neurodegenerative disorder that devastates the brain-affecting cognitive function, memory, visual spatial perception, abstract thinking, and eventually loss of bodily functions. Based on the latest Rand report on dementia and AD, the current costs in lives lost, families shattered, careers disrupted, and financial futures ruined is much too high. And with the projected increases in the number of individuals affected by AD and related dementias in coming years, the global costs become unendurable and insupportable. Many pharmaceutical companies have dismantled their AD treatment discovery programs because of failed experimental therapeutics in costly Phase III clinical trials. Recently, a paradigm shift to focus earlier in the disease process to include preclinical populations with mild cognitive impairment (MCI) due to AD has emerged. 1-3 It is antici
Background The What Matters Most (WMM) study was initiated to evaluate symptoms, AD-related impac... more Background The What Matters Most (WMM) study was initiated to evaluate symptoms, AD-related impacts, treatment-related needs, preferences, and priorities among individuals with or at risk for Alzheimer’s disease (AD) and their care partners. The objective of this qualitative study phase was to identify a comprehensive set of concepts of interest that are meaningful to individuals across the AD continuum. Methods Interviews were conducted with 60 clinically referred individuals and care partners across 5 AD stages (n = 12 each): group 1 (non-clinically impaired individuals with AD pathology), group 2 (individuals with mild cognitive impairment and AD pathology), group 3 (individuals with mild AD), group 4 (individuals with moderate AD and their care partners), and group 5 (care partners of individuals with severe AD). Interviews were conducted by experienced interviewers, audio-recorded, and transcribed. Dominant trends were identified in each interview and compared across subsequent...
The specific objective of the COVID-19 Survey series is to understand the “real time” burdens and... more The specific objective of the COVID-19 Survey series is to understand the “real time” burdens and challenges of people living with dementia in this new restrictive environment. Overall, the main purpose of the Study is to develop an understanding over time, through multiple research projects, about “what matters most” to individuals with and/or affected by Alzheimer’s disease and other dementias, including caregivers, and those concerned about brain health.
... frey Kaye, Ara S. Khachaturian, Edward Koo, Lew Kuller, Richard Mohs, Marcelle Morrison-Bogor... more ... frey Kaye, Ara S. Khachaturian, Edward Koo, Lew Kuller, Richard Mohs, Marcelle Morrison-Bogorad, Tony Phelps, Judes Poirier, Barry Reisberg, Marwan Sabbagh, David P. Salmon, Mary Sano, Dale Schenk, James Simpkins, Ste-phen Snyder, Ronald G. Thomas, ...
This document proposes an array of recommendations for a National Plan of Action to accelerate th... more This document proposes an array of recommendations for a National Plan of Action to accelerate the discovery and development of therapies to delay or prevent the onset of disabling symptoms of Alzheimer's disease. A number of key scientific and public-policy needs identified in this document will be incorporated by the Alzheimer Study Group into a broader National Alzheimer's Strategic Plan, which will be presented to the 111th Congress and the Obama administration in March 2009. The Alzheimer's Strategic Plan is expected to include additional recommendations for governance, family support, healthcare, and delivery of social services.
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