Authors: Grill, Joshua D. | Zhou, Yan | Karlawish, Jason | Elashoff, David
Article Type: Research Article
Abstract: Most patients with Alzheimer's disease (AD) do not have a spouse. Despite this, the majority of AD research participants enroll with a spouse study partner. It remains unclear if differences between AD patients who do and do not have a spouse may bias study results. In this study, we examined whether AD patients with different study partner types (spouse versus adult child) demonstrate different rates of disease progression over two years on three outcome measures commonly used in AD research, including clinical trials. We used data from the National Alzheimer's Coordinating Center Uniform Data Set to examine disease progression in …participants age 55–90 with probable AD dementia. We examined disease progression as measured by the Clinical Dementia Rating Scale-Sum of the Boxes score, the Mini Mental Status Examination, and the Functional Assessment Questionnaire. Analyses were performed on data for all available eligible participants from the NACC UDS and after performing a propensity-matching model to better account for inherent differences between the populations of interest. Propensity matching was successful only when models did not include age and gender. For both propensity-matched analyses and those of all available data, we did not observe any differences between the study partner populations for any outcome measure. These results suggest that if investigators can improve in recruiting AD patients with adult child caregivers to research, the implications to study results may be minimal. Show more
Keywords: Adult children, Alzheimer's disease, caregivers, clinical trial, disease progression, spouses
DOI: 10.3233/JAD-131052
Citation: Journal of Alzheimer's Disease, vol. 38, no. 3, pp. 507-514, 2014
Authors: Tandetnik, Caroline | Farrell, Meagan T. | Cary, Mark S. | Cines, Sarah | Emrani, Sheina | Karlawish, Jason | Cosentino, Stephanie
Article Type: Research Article
Abstract: Background: Subjective cognitive decline (SCD) is increasingly considered promising to detect preclinical Alzheimer’s disease. How SCD is ascertained is critical for determining its potential utility in identifying at-risk individuals, yet SCD measures differ along several dimensions. Objective: We aimed to examine the extent to which reports of SCD in healthy elderly may be influenced by the characteristics of the SCD measures. We investigated variations in rates of SCD endorsement across different measures, including an open-ended question. We also examined the association of responses across measures, and the degree to which specific SCD items were associated with objective memory performance. Methods: …99 healthy elderly completed a series of questionnaires from which 10 items examining SCD for memory and other aspects of cognition were drawn. We applied Cochran’s Q tests to assess differences in rates of SCD, correlation analyses to examine association of SCD responses, and regression models to determine the association between SCD items and delayed verbal memory. Results: Rates of SCD varied as a function of the assessment format, ranging from 1 to 7% for memory and 5 to 20% for concentration. SCD was lower for memory versus non-memory domains. SCD items were associated both within and across domains. The most accurate predictor of memory was memory-related SCD in comparison to others the same age. Conclusion: Characteristics of SCD items influence rates of endorsement. Querying SCD using an “age-anchored” question may provide the most accurate reflection of actual cognitive performance. Show more
Keywords: Aging, cognitive complaints, early detection, metacognition, subjective cognitive decline, subjective memory complaints
DOI: 10.3233/JAD-150251
Citation: Journal of Alzheimer's Disease, vol. 48, no. s1, pp. S43-S55, 2015
Authors: Jefferson, Angela L. | Lambe, Susan | Chaisson, Christine | Palmisano, Joseph | Horvath, Kathy J. | Karlawish, Jason
Article Type: Research Article
Abstract: In light of our limited understanding of what motivates older adults to participate in clinical studies of Alzheimer's disease (AD), the current study examines incentives and barriers to participating in AD clinical research among older adults. 235 participants enrolled in the Boston University Alzheimer's Disease Center research registry (75 ± 8 years, range 58–99 years, 60% female), a longitudinal registry from which individuals are recruited into other clinical studies, completed a survey assessing registry participation satisfaction, religiousness, trust in healthcare institutions, and medical research attitudes. Most participants reported initially enrolling in the registry for societal benefit. Insufficient time was a …commonly endorsed barrier to enrolling in other Center-approved studies, particularly among younger participants. Driving and a lack of transportation to the medical facility were also barriers, particularly for older participants. Transportation was the most popular incentive, followed by home-based visits (particularly for older participants and participants with less formal education) and compensation (particularly among respondents from racial/ethnic minority groups). Participation interest in other studies was associated with favorable medical research attitudes (r = 0.34, p = 0.00003) but not religiousness (r = −0.09, p = 0.21), or trust in healthcare institutions (r = 0.09, p = 0.17). Among older adults, societal benefit is a motivating factor for registry enrollment; however, participation in additional studies is hindered by insufficient time among younger participants and transportation barriers among older participants. Providing transportation, home-based visits, and modest compensation may improve participation rates. Furthermore, favorable attitudes toward medical research are strongly associated with interest in enrolling in additional studies and may serve as a beneficial outreach triage technique. Show more
Keywords: Alzheimer's disease, barriers, clinical research, incentives, participation
DOI: 10.3233/JAD-2010-101536
Citation: Journal of Alzheimer's Disease, vol. 23, no. 3, pp. 443-452, 2011
Authors: Stites, Shana D. | Largent, Emily A. | Johnson, Rebecca | Harkins, Kristin | Karlawish, Jason
Article Type: Research Article
Abstract: Background: As a result of caring for a person with dementia, caregivers of persons with Alzheimer’s disease (AD) may be uniquely aware of public stigma for persons with AD. Objective: The purpose of this study was to compare self-identified caregivers and non-caregivers’ expectations of public stigma experienced by persons living with dementia. Methods: Analysis of data from a survey of 910 adults (median age = 49 years) who read a vignette about a man with mild stage dementia. Multivariable ordered logistic regression was used to examine how AD caregiver status associated with responses on a modified Family Stigma in Alzheimer’s Disease Scale …(FS-ADS). Results: 9%(n = 82) of respondents self-identified as a current or former primary caregiver of a person with AD, about the same as the national estimate of informal caregivers (8.8%). Compared to non-caregivers, AD caregivers were more likely to report stronger reactions on all seven domains of the FS-ADS (all p < 0.05). As compared to AD caregivers with less factual knowledge about caregiving, AD caregivers with more knowledge expected the person with dementia to experience less social distance (p < 0.05). In addition, female AD caregivers reported fewer negative aesthetic attributions than male AD caregivers (p < 0.05). Conclusion: Compared to non-caregivers, respondents who self-identified as an AD caregiver gave responses that suggest they perceived more stigma of dementia among members of the public. Their reactions were attenuated by AD knowledge and being female. The findings have key implications for interventions to reduce AD stigma. Show more
Keywords: Alzheimer’s disease, caregivers, public survey, stigma
DOI: 10.3233/ADR-200206
Citation: Journal of Alzheimer's Disease Reports, vol. 5, no. 1, pp. 31-39, 2021
Authors: Largent, Emily A. | Bhardwaj, Twisha | Abera, Maramawit | Stites, Shana D. | Harkins, Kristin | Lerner, Alan J. | Bradbury, Angela R. | Karlawish, Jason
Article Type: Research Article
Abstract: Background: Current practice guidelines recommend against Apolipoprotein E (APOE ) testing. However, advances in Alzheimer’s disease (AD) research and care may soon change this. Objective: To examine longitudinally the experience of learning an APOE result and, if an ɛ4 carrier, taking a disease-specific treatment to reduce one’s risk of AD. Methods: Fifty ɛ4 carriers and 20 non-carriers completed semi-structured interviews 3 months and 15 months after APOE disclosure. Results: Individuals generally understand their APOE results. While non-carriers felt relief, ɛ4 carriers often described themselves as disappointed by their result but nevertheless glad to know. Carriers expressed concerns about stigma and …discrimination, including in the workplace. Carriers adopted new health behaviors at higher rates than non-carriers and revised their future plans to account for their increased risk of AD. Individuals participating in research were hopeful that their participation would help them or others; individuals who learned they were at increased risk for AD but who could not participate in research were disappointed. Conclusion: Providers disclosing APOE results should be sensitive to how APOE results shape emotions, self-perceptions, and attitudes about memory; raise concerns about stigma and discrimination in personal and professional relationships; influence health behaviors and decision-making; and can have follow-on effects on family members. Show more
Keywords: Amyloid, apolipoprotein E, dementia, genetic counseling, genetic testing, risk
DOI: 10.3233/JAD-210675
Citation: Journal of Alzheimer's Disease, vol. 84, no. 3, pp. 1015-1028, 2021
Authors: Arnold, Steven E. | Vega, Irving E. | Karlawish, Jason H. | Wolk, David A. | Nunez, Jessica | Negron, Mirna | Xie, Sharon X. | Wang, Li-San | Dubroff, Jacob G. | McCarty-Wood, Elisabeth | Trojanowski, John Q. | Van Deerlin, Vivianna
Article Type: Research Article
Abstract: The frequency and clinical and pathological characteristics associated with the Gly206Ala presenilin 1 (PSEN1) mutation in Puerto Rican and non-Puerto Rican Hispanics were evaluated at the University of Pennsylvania's Alzheimer's Disease Center. DNAs from all cohort subjects were genotyped for the Gly206Ala PSEN1 mutation. Carriers and non-carriers with neurodegenerative disease dementias were compared for demographic, clinical, psychometric, and biomarker variables. Nineteen (12.6%) of 151 unrelated subjects with dementia were discovered to carry the PSEN1 Gly206Ala mutation. Microsatellite marker genotyping determined a common ancestral haplotype for all carriers. Carriers were all of Puerto Rican heritage with significantly younger age of onset, …but otherwise were clinically and neuropsychologically comparable to those of non-carriers with AD. Three subjects had extensive topographic and biochemical biomarker assessments that were also typical of non-carriers with AD. Neuropathological examination in one subject revealed severe, widespread plaque and tangle pathology without other meaningful disease lesions. The PSEN1 Gly206Ala mutation is notably frequent in unrelated Puerto Rican immigrants with dementia in Philadelphia. Considered together with the increased prevalence and mortality of AD reported in Puerto Rico, these high rates may reflect hereditary risk concentrated in the island which warrants further study. Show more
Keywords: Age of onset, dementia, haplotype, presenilin
DOI: 10.3233/JAD-2012-121570
Citation: Journal of Alzheimer's Disease, vol. 33, no. 4, pp. 1089-1095, 2013
Authors: Fenton, Laura | Han, S. Duke | DiGuiseppi, Carolyn G. | Fowler, Nicole R. | Hill, Linda | Johnson, Rachel L. | Peterson, Ryan A. | Knoepke, Christopher E. | Matlock, Daniel D. | Moran, Ryan | Karlawish, Jason | Betz, Marian E.
Article Type: Research Article
Abstract: Background: Older adults are faced with many unique and highly consequential decisions such as those related to finances, healthcare, and everyday functioning (e.g., driving cessation). Given the significant impact of these decisions on independence, wellbeing, and safety, an understanding of how cognitive impairment may impact decision making in older age is important. Objective: To examine the impact of mild cognitive impairment (MCI) on responses to a modified version of the Short Portable Assessment of Capacity for Everyday Decision making (SPACED). Methods: Participants were community-dwelling, actively driving older adults (N = 301; M age = 77.1 years, SD = 5.1; 69.4% with a college degree or higher; …51.2% female; 95.3% White) enrolled in the Advancing Understanding of Transportation Options (AUTO) study. A generalized linear model adjusted for age, education, sex, randomization group, cognitive assessment method, and study site was used to examine the relationship between MCI status and decision making. Results: MCI status was associated with poorer decision making; participants with MCI missed an average of 2.17 times more points on the SPACED than those without MCI (adjusted mean ratio: 2.17, 95% CI: 1.02, 4.61, p = 0.044). Conclusion: This finding supports the idea that older adults with MCI exhibit poorer decision-making abilities than cognitively normal older adults. It also suggests that older adults with MCI may exhibit poorer decision making across a wide range of decision contexts. Show more
Keywords: Alzheimer’s disease, cognition, decision making, mild cognitive impairment, older adults
DOI: 10.3233/JAD-230222
Citation: Journal of Alzheimer's Disease, vol. 94, no. 4, pp. 1607-1615, 2023