4 results
8 Perspectives of Self, Stigma, and the Future Following Alzheimer's Disease Biomarker Disclosure in Cognitively Symptomatic Older Adults
- Annalise Rahman-Filipiak, Mary Lesniak, Marie Milliken, Sara Feldman, J. Scott Roberts, Benjamin M Hampstead
-
- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, pp. 219-221
-
- Article
-
- You have access Access
- Export citation
-
Objective:
In the absence of treatments to halt or reverse symptoms of Alzheimer's disease, early detection may extend the window for meaningful treatment, advanced planning, and coping. Positron emission tomography (PET) scans for amyloid and tau are validated biomarkers of AD, yet results are rarely disclosed to participants due to concerns about negative impacts. While prior studies suggest limited anxiety, depression, or suicidality following biomarker disclosure, no study to date has examined broader psychological impacts of PET amyloid/tau disclosure to symptomatic individuals. Therefore, we explored post-disclosure changes in future time perspective (perceptions of limited time or possibilities left in the future), self-efficacy for managing symptoms, and perceived stigma as a function of result received.
Participants and Methods:Forty-three older adults (age = 72.0±6.2 years; education = 16.5±2.6; 88.4% White Non-Hispanic; 48.8% female) participated in the study, of whom 62.8% were diagnosed with mild cognitive impairment (MCI) and the remainder with Dementia of the Alzheimer's type. All participants underwent pre-disclosure biomarker education and decisional capacity assessment, followed by baseline measures. Participants demonstration decisional capacity completed an interactive disclosure session during which they received dichotomous results of their research positron emission tomography (PET) scans for amyloid and tau (elevated versus not elevated for each biomarker). Findings were discussed in relation to presence/absence of Alzheimer's disease, the etiology of their cognitive difficulties, and risk for conversion or further decline. At baseline, immediately following disclosure, and at 1-week follow-up, participants completed several questionnaires: the Future Time Perspective (FTP) scale, a measure of how much the participant sees time as limited, the Self Efficacy for Managing Chronic Disease scale (SECD), and the Stigma Scale for Chronic Illness (SSCI-8), all of which were modified to apply to Alzheimer's disease and associated experiences.
Results:The main effects of time (F=1.10, p=.334, A?p2=.026), biomarker status (F(1)=3.10, p=.086, Ajp2=.070), and the time by biomarker status interaction (F=0.39, p=.661, Ajp2=.009) on FTP score was not significant. Though neither time (F=0.07, p=.933, A?p2=.002) nor the time by biomarker status interaction (F=2.16, p=.122, Ajp2=.050) effect on SECD was significant, being biomarker positive (A+T-/A+T+) was associated with lower self-efficacy (F(1)=5.641, p=.022, Ajp2=.121). Neither main effect for time (F=0.15, p=.853, Ajp2=.004) or biomarker status (F(1)=0.35, p=.558, A?p2=.009) on SSCI-8 was significant. The time by biomarker status interaction was significant (f=4.27, p=.018, =.096), such that biomarker negative participants experience a transient increase in perceived stigma directly after disclosure that resolves one week later, and biomarker negative participants experience the opposite pattern.
Conclusions:Findings suggest that individuals who receive biomarker positive results may feel less competent to manage their symptoms compared to those who are biomarker negative, emphasizing the need for post-disclosure interventions targeting self-efficacy. The effect of disclosure on perceptions of time being limited and on perceived stigma were minimal, even when those results indicate evidence of Alzheimer's disease and risk for clinical progression. These results further support the safety of biomarker disclosure procedures. Future studies should provide longer-term assessment of psychological, behavioral, and clinical outcomes following Alzheimer's disease biomarker disclosure.
40 Positive and Negative Emotional Outcomes Following Alzheimer’s Disease Biomarker Disclosure in Cognitively Symptomatic Older Adults
- Mary R. Lesniak, Marie Milliken, Sara Feldman, Scott J. Roberts, Benjamin M. Hampstead, Annalise M. Rahman-Filipiak
-
- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, pp. 248-249
-
- Article
-
- You have access Access
- Export citation
-
Objective:
There are many potential benefits of early identification of those with Alzheimer’s disease (AD), including more opportunity for early intervention to slow AD progression (e.g., treatment, lifestyle changes, etc.) and to plan for the future. Positron emission tomography (PET) scans for abnormal amyloid and tau are commonly conducted in research settings. Despite strong interest in learning AD biomarker results, participants rarely receive their research data, in part due to concern about the possibility of undue distress based on results. We aimed to explore both positive and negative emotional reactions following PET biomarker disclosure as a function of result received.
Participants and Methods:Forty-three older adults (age = 72.0±6.21 years, education = 16.5±2.62 years, 49% Female, 88% White Non-Hispanic) completed PET amyloid and tau testing and disclosure. Sixty-three percent were diagnosed with mild cognitive impairment (MCI) while the remainder of participants were diagnosed with Dementia Alzheimer’s type (DAT). Participants completed pre-disclosure biomarker education and a decisional capacity assessment followed by baseline measures. Participants then completed a disclosure session where they received personal PET amyloid and tau results on an elevated vs. not elevated scale for each ligand. Results were discussed in relation to presence/absence of Alzheimer’s disease, how the result relates to their cognitive difficulties, and risk of developing Dementia-Alzheimer’s Type. At baseline (pre-disclosure), immediately post-disclosure, and 1-week post-disclosure, participants completed the Beck Anxiety Inventory (BAI), The Geriatric Depression Scale - 15 Item (GDS-15), Impact of Neuroimaging in AD (INI-AD) Scale, and the Positive and Negative Affective Scale - Short Form (PANAS-SF). All questionnaires were modified to apply to Alzheimer’s disease and related experiences.
Results:Of the 43 participants who participated in disclosure, 74% received biomarker positive results (either A+T- or A+T+); all others were biomarker negative. We conducted a series of mixed analysis of variance (ANOVA) tests to determine the effect of disclosure and biomarker status for each of the outcomes of interest. Neither the effect of time nor the time by biomarker status interaction was significant for any of the outcomes (all p>.05). The main effect of biomarker status was significant for BAI (F(1)=5.12, p=.031, n,p2=.146) and INI-AD Distress (F(1)=12.70, p=.001, np2=.241) and Positive (F(1)=34.57, p<.001, np2=.464) subscale scores with A+T-/A+T+ participants reporting higher negative affect than those who were A-/T-; however, even among biomarker positive individuals, scores did not exceed clinical thresholds. GDS-15, PANAS-Negative and Positive Subscale scores did not differ significantly by biomarker status (all p>.05) and no significant adverse events occurred following disclosure. Additionally, no participants cited regret about receiving their results.
Conclusions:While disclosure of biomarker positivity may result in mild increases in acute anxiety or distress, or fewer positive emotions, it does not result in clinically significant emotional reactions and was not associated with regret. Overall, findings are consistent with literature indicating safety of biomarker disclosure procedures for symptomatic individuals. Future research should follow participants over longer periods to evaluate the impacts of biomarker disclosure.
Notes on Contributors
-
- By Thomas M. Achenbach, Marc H. Bornstein, W. Thomas Boyce, Robert H. Bradley, Kelly Bridges, Jeanne Brooks-Gunn, Brenda K. Bryant, Sandra L. Calvert, Scott Coltrane, E. Mark Cummings, Stacey B. Daughters, Cindy DeCoste, Marc de Rosnay, Jacquelynne S. Eccles, Hadas Eidelman, Ruth Feldman, Peter Fonagy, Walter S. Gilliam, Andrea L. Gold, Elena L. Grigorenko, Sara Harkness, Sybil L. Hart, Jessica S. Henry, Erika Hoff, Tom Hollenstein, Stephanie M. Jones, Julia Kim-Cohen, Pamela K. Klebanov, Brett Laursen, Mary J. Levitt, Alicia F. Lieberman, Shoon Lio, Jessica F. Magidson, Ann S. Masten, David L. Molfese, Peter J. Molfese, Lynne Murray, Jelena Obradović, Lauren M. Papp, Ross D. Parke, Yaacov Petscher, Aelesia Pisciella, Aliza W. Pressman, Sarah Rabbitt, Craig T. Ramey, Sharon Landesman Ramey, Jessica M. Richards, Robert W. Roeser, Thomas J. Schofield, Ronald Seifer, Anne Shaffer, Michelle Sleed, Laura Stout Sosinsky, Nancy E. Suchman, Charles M. Super, Louis Tuthill, Patricia Van Horn, Eric Vega, Sarah Ward, Monica Yudron
- Edited by Linda Mayes, Yale University, Connecticut, Michael Lewis
-
- Book:
- The Cambridge Handbook of Environment in Human Development
- Published online:
- 05 October 2012
- Print publication:
- 27 August 2012, pp ix-xvi
-
- Chapter
- Export citation
The Earliest Lowland Maya? Definition of the Swasey Phase
- Norman Hammond, Duncan Pring, Richard Wilk, Sara Donaghey, Frank P. Saul, Elizabeth S. Wing, Arlene V. Miller, Lawrence H. Feldman
-
- Journal:
- American Antiquity / Volume 44 / Issue 1 / January 1979
- Published online by Cambridge University Press:
- 20 January 2017, pp. 92-110
- Print publication:
- January 1979
-
- Article
- Export citation
-
Recent excavations in Belize have resulted in the discovery of an earlier period of sedentary occupation than has hitherto been documented in the Maya Lowlands. The Swasey phase is stratigraphically antecedent to occupations of the early Middle Formative, the earliest horizon located until now, and associated radiocarbon dates suggest a persistence from 2000–1000 b.c./2500–1300 B.C. The ceramic and lithic material culture of the phase are described, together with architectural construction and burial practice, and the overall cultural identity is recognized as ancestral to the known Maya Lowland Formative. External contacts of the Cuello site are documented by exotic minerals, and the possible external antecedents for the Swasey ceramic tradition are canvassed.