Preliminary Efficacy of a Recruitment Educational Strategy on Alzheimer’s Disease Knowledge, Research Participation Attitudes, and Enrollment Among Hispanics

Introduction: Hispanics remain underrepresented in dementia clinical research. This one-arm trial aimed to assess the preliminary efficacy of a culturally tailored recruitment educational strategy among Hispanic older adults on dementia knowledge, research participation attitudes, and enrollment. Method: The recruitment strategy included 6 one-session culturally tailored dementia education events at trusted community senior centers. Participants received a pre–post survey including a 5-point Likert-type scale and the Epidemiology/Etiology Disease Scale to assess dementia knowledge, and a 4-point Likert-type scale assessing research participation attitudes. We gave participants contact information slips to complete if interested in dementia research. We also tracked participants’ enrollment into the National Alzheimer’s Coordinating Center Cohort. Results: Dementia knowledge increased 0.9 points (5-point Likert-type scale) and 2.2 points (epidemiology/etiology disease scale, p < .001). Interest in participating in dementia research increased from 61.7% to 80.9% ( p = .039), 64.0% returned their contact information slips, and 41.1% successfully enrolled into the National Alzheimer’s Coordinating Center Cohort. Conclusion: A recruitment strategy including culturally tailored dementia education improves dementia knowledge, research participation attitudes, and enrollment among Hispanic older adults.

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Comfort with proxy consent to research involving decisionally impaired older adults: do type of proxy and risk-benefit profile matter?

International Psychogeriatrics ◽

10.1017/s1041610211000433 ◽

2011 ◽

Vol 23 (9) ◽

pp. 1479-1488 ◽

Cited By ~ 9

Author(s):

Marie-France Dubois ◽

Gina Bravo ◽

Janice Graham ◽

Sheila Wildeman ◽

Carole Cohen ◽

...

Keyword(s):

Older Adults ◽

Informal Caregivers ◽

Research Participation ◽

Low Risk ◽

Board Members ◽

Proxy Consent ◽

People With Dementia ◽

Random Samples ◽

Dementia Research ◽

Canadian Provinces

ABSTRACTBackground: Dementia research often requires the participation of people with dementia. Obtaining informed consent is problematic when potential participants lack the capacity to provide it. We investigated comfort with proxy consent to research involving older adults deemed incapable of this decision, and examined if comfort varies with the type of proxy and the study's risk-benefit profile.Methods: We surveyed random samples of five relevant groups (older adults, informal caregivers, physicians, researchers in aging, and Research Ethics Board members) from four Canadian provinces. Respondents were presented with scenarios involving four types of proxies (non-assigned, designated in a healthcare advance directive with or without instructions specific to research participation, and court-appointed). Given a series of risk-benefit profiles, respondents indicated whether they were comfortable with proxy consent to research for each scenario.Results: Two percent of the respondents felt proxy consent should never be allowed. In all groups, comfort depended far more on the risk-benefit profile associated with the research scenario than with type of proxy. For research involving little or no risk and potential personal benefits, over 90% of the respondents felt comfortable with substitute consent by a designated or court-appointed proxy while 80% were at ease with a non-assigned proxy. For studies involving serious risks with potentially greater personal benefits, older adults and informal caregivers were less comfortable with proxy consent.Conclusions: A large majority of Canadians are comfortable with proxy consent for low-risk research. Further work is needed to establish what kinds of research are considered to be low risk.

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Insights From African American Older Adults on Brain Health Research Engagement: “Need to See the Need”

Journal of Applied Gerontology ◽

10.1177/0733464820902002 ◽

2020 ◽

pp. 073346482090200

Author(s):

Shoshana H. Bardach ◽

Markeda Yarbrough ◽

Charlene Walker ◽

Doris L. Alfred ◽

Eseosa Ighodaro ◽

...

Keyword(s):

Older Adults ◽

African American ◽

Health Research ◽

Research Participation ◽

Elevated Risk ◽

Brain Health ◽

Research Engagement ◽

Disease Research ◽

Dementia Research ◽

Barriers And Opportunities

African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer’s disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

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Improving Dementia Clinical Research Participation: Strategies From a Portland, Oregon, Pilot Study

Innovation in Aging ◽

10.1093/geroni/igaa057.187 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 57-58

Author(s):

Nicole Bouranis ◽

Sherril Gelmon ◽

Elizabeth Needham Waddell ◽

Dawn Richardson ◽

Hyeyoung Woo ◽

...

Keyword(s):

Clinical Research ◽

Family Caregivers ◽

Local Community ◽

Research Participation ◽

Healthcare Research ◽

Community Advisory Board ◽

Community Collaboration ◽

People With Dementia ◽

Dementia Research ◽

Health Action

Abstract The NIA’s strategy to improve ADRD clinical research participation emphasizes local community collaboration. Literature that focuses on a person with dementia’s decision to participate in research does not speak to specific state or local factors nor the effects of local efforts. This study aimed to develop strategies to improve dementia research participation in the Portland, OR metropolitan area. A community advisory board comprised of clinicians, researchers, advocates, people with dementia, family caregivers, and older African Americans was established for this project. Thirty-three interviews were conducted with clinicians, researchers, advocates, people with ADRD, and family caregivers. The Robert Wood Johnson Foundation’s Culture of Health Action Framework was used to conceptualize motivation strategies and reflect elements that describe research participation among people with dementia. Strategies were identified to improve dementia clinical research participation: 1) Identify and promote local champions for ADRD clinical research participation; 2) Promote policies and processes that incentive cross-sector collaboration; 3) Recognize caregivers as full research participants; 4) Include people with ADRD and caregivers in the research design process; 5) Offer alternative options to reduce participation burden; 6) Evaluate and improve relationships between healthcare/research staff and patients/participants. These strategies can be used in conjunction with the Culture of Health Action Framework as a roadmap to form organization-community partnerships, facilitate motivation and empowerment, give decision-making power to people with ADRD and promote a local culture of research. Studies should be conducted in a larger context or as pilots in other communities to determine contextual relevance and generalizability for other areas.

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Supplemental Material for Evaluating Autonomy, Beneficence, and Justice With Substance-Using Populations: Implications for Clinical Research Participation

Psychology of Addictive Behaviors ◽

10.1037/adb0000378.supp ◽

2018 ◽

Keyword(s):

Clinical Research ◽

Research Participation

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Erratum to Clinical Research in Older Adults with Hematologic Malignancies: Opportunities for Alignment in the Veterans Affair [Seminars in Oncology (2019) 341-345]

Seminars in Oncology ◽

10.1053/j.seminoncol.2020.02.008 ◽

2020 ◽

Vol 47 (1) ◽

pp. 93

Keyword(s):

Older Adults ◽

Clinical Research ◽

Hematologic Malignancies

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Perceptions of Dementia among Asian Indian Americans

10.36650/nexus6.2_45-65_otilingametal ◽

2008 ◽

Vol 6 (2) ◽

pp. 45-65 ◽

Cited By ~ 3

Author(s):

Poorni Otilingam ◽

Margaret Gatz

Keyword(s):

Asian Indian ◽

Help Seeking ◽

Memory Loss ◽

Convenience Sample ◽

Culturally Tailored ◽

Willingness To Seek Help ◽

Indian Americans ◽

Education And Care ◽

Dementia Education ◽

Asian Indian Americans

We surveyed a convenience sample of 255 Asian Indian Americans (AIAs) aged 18-81 years assessing perceptions of dementia etiology, help-seeking, and treatment, and knowledge of symptoms of Alzheimer’s disease (AD). In response to a vignette describing the early stages of AD, participants indicated a substantial willingness to seek help. Most participants knew that memory loss was the key symptom of dementia, yet most knowledge items were correctly answered by fewer than half of the sample. Participants who had more knowledge of AD were more likely than those with less knowledge of AD to state that they would seek help for an elderly relative showing symptoms of dementia. Relative to other psychosocial factors, loneliness was highly rated as an etiological factor and keeping mentally active was highly rated as a treatment. This study is the first to document dementia beliefs among AIAs, illustrating the need for culturally-tailored dementia education and care for the AIA population.

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Muscle quantity and function measurements are acceptable to older adults during and post- hospitalisation: results of a questionnaire-based study

BMC Geriatrics ◽

10.1186/s12877-021-02091-3 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Carly Welch ◽

Carolyn Greig ◽

Tahir Masud ◽

Thomas A. Jackson

Keyword(s):

Older Adults ◽

Gait Speed ◽

Bacterial Infections ◽

Handgrip Strength ◽

General Medicine ◽

Research Participation ◽

Bioelectrical Impedance ◽

Impedance Analysis ◽

Queen Elizabeth Hospital ◽

Elective Colorectal Surgery

Abstract Background To evaluate the acceptability of handgrip strength, gait speed, quadriceps ultrasound, and Bioelectrical Impedance Analysis (BIA) to older adults conducted during and following hospitalisation. Methods Questionnaire-based study conducted upon completion of prospective cohort study, with follow-up in either Queen Elizabeth Hospital Birmingham (QEHB), UK, or participant’s own home following recent admission to QEHB. Outcome measures were acceptability as defined by total multi-domain score for each test (maximum score 35), and by frailty status. Results Forty adults aged 70 years and older admitted for emergency abdominal surgery, elective colorectal surgery, or acute bacterial infections (general medicine) participated. Handgrip strength (median 33, IQR 30–35; p = 0.001), gait speed (median 32, IQR 30–35; p = 0.002), ultrasound quadriceps (median 33, IQR 31–35; p = 0.001), and BIA (median 33.5, IQR 31–35; p = 0.001) were considered highly acceptable. Participants responded positively that they enjoyed participating in these tests, and considered these tests of importance. There was no difference in scores between tests (p = 0.166). Individual total test scores did not differ between patients with and without frailty. Qualitative data are also presented on drivers for research participation. Conclusions Handgrip strength, gait speed, ultrasound quadriceps, and BIA are acceptable tests to older adults during and following hospitalisation. Our results may serve as standards when evaluating acceptability of other tests. Trial registration Prospectively registered February 2019: https://clinicaltrials.gov/ct2/show/NCT03858192

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Recruitment and Screening Methods in Alzheimer’s Disease Research: The FIT-AD Trial

The Journals of Gerontology Series A ◽

10.1093/gerona/glab092 ◽

2021 ◽

Author(s):

Susan Greimel ◽

Jean F Wyman ◽

Lin Zhang ◽

Fang Yu

Keyword(s):

Alzheimer’S Disease ◽

Older Adults ◽

Alzheimer's Disease ◽

Exercise Intervention ◽

Community Outreach ◽

Community Dwelling ◽

Single Site ◽

Recruitment Strategy ◽

Screening Methods ◽

Screening Process

Abstract Background Recruiting older adults with Alzheimer’s disease (AD) dementia into clinical trials is challenging requiring multiple approaches. We describe recruitment and screening processes and results from the FIT-AD Trial, a single site, pilot randomized controlled trial testing the effects of a 6-month aerobic exercise intervention on cognition and hippocampal volume in community-dwelling older adults with mild-to moderate AD dementia. Methods Ten recruitment strategies and a four-step screening process were used to ensure a homogenous sample and exercise safety. The initial target sample was 90 participants over 48 months which was increased to 96 to allow those in the screening process to enroll if qualified. A tertiary analysis of recruitment and screening rates, recruitment yields and costs, and demographic characteristics of participants was conducted. Results During the 48-month recruiting period, 396 potential participants responded to recruitment efforts, 301 individuals were reached and 103 were tentatively qualified. Of these, 67 (69.8%) participants completed the optional magnetic resonance (MRI) imaging and seven were excluded due to abnormal MRI findings. As a result, we enrolled 96 participants with a 2.92 screen ratio, 2.14 recruitment rate, and 31.9% recruitment yield. Referrals (28.1%) and Alzheimer’s Association events/services (21.9%) yielded over 49% of the enrolled participants. Total recruitment cost was $ 38,246 or $ 398 per randomized participant. Conclusions A multi-prong approach involving extensive community outreach was essential in recruiting older adults with AD dementia into a single-site trial. For every randomized participant, three individuals needed to be screened. Referrals were the most cost-effective recruitment strategy.

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