Literature DB >> 27179001

Study partners perform essential tasks in dementia research and can experience burdens and benefits in this role.

Betty S Black1, Holly A Taylor2, Peter V Rabins3, Jason Karlawish4.   

Abstract

Most studies that enroll individuals with dementia require a study partner for each participant. Study partners-usually family members-perform several key roles: accompanying the participant to visits, providing information about the participant, and assisting with procedures such as taking medication. Little is known, however, about their experiences when performing these roles. Dementia researchers and institutional review boards need to know these experiences because the study partner role is one key factor in a study's success. This prospective qualitative study, using up to three semi-structured interviews with 62 study partners involved in a range of dementia studies, documented their subjective experiences. Content analysis demonstrates that study partners perform a range of tasks-often within the context of being a caregiver-that enable cognitively impaired individuals to participate in dementia research. These tasks present study partners with unique burdens and benefits, some of which dementia researchers and institutional review boards can address.
© The Author(s) 2016.

Entities:  

Keywords:  Caregiver; dementia research; informant; study partner

Year:  2016        PMID: 27179001      PMCID: PMC5107353          DOI: 10.1177/1471301216648796

Source DB:  PubMed          Journal:  Dementia (London)        ISSN: 1471-3012


  23 in total

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4.  The culture of faith and hope: patients' justifications for their high estimations of expected therapeutic benefit when enrolling in early phase oncology trials.

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5.  Effect of study partner on the conduct of Alzheimer disease clinical trials.

Authors:  Joshua D Grill; Rema Raman; Karin Ernstrom; Paul Aisen; Jason Karlawish
Journal:  Neurology       Date:  2012-12-19       Impact factor: 9.910

6.  Researchers' perspectives on the role of study partners in dementia research.

Authors:  Betty S Black; Holly Taylor; Peter V Rabins; Jason Karlawish
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Review 7.  Caregiver burden among dementia patient caregivers: a review of the literature.

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Journal:  J Am Acad Nurse Pract       Date:  2008-08

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Authors:  Nancy Kass; Holly Taylor; Linda Fogarty; Jeremy Sugarman; Steven N Goodman; Annallys Goodwin-Landher; Michael Carducci; Herbert Hurwitz
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9.  Does study partner type impact the rate of Alzheimer's disease progression?

Authors:  Joshua D Grill; Yan Zhou; Jason Karlawish; David Elashoff
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10.  Patient and carer views on participating in clinical trials for prodromal Alzheimer's disease and mild cognitive impairment.

Authors:  Vanessa Lawrence; James Pickett; Clive Ballard; Joanna Murray
Journal:  Int J Geriatr Psychiatry       Date:  2013-05-06       Impact factor: 3.485

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  9 in total

1.  A Preliminary Study of Clinical Trial Enrollment Decisions Among People With Mild Cognitive Impairment and Their Study Partners.

Authors:  Chelsea G Cox; Mary M Ryan B A; Daniel L Gillen; Joshua D Grill
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2.  You've Got a Friend in Me: How Cognitively Unimpaired Older Adults Select a Study Partner to Participate with Them in Alzheimer's Disease Research.

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3.  Dyadic Enrollment in a Phase 3 Mild Cognitive Impairment Clinical Trial.

Authors:  Navneet R Hakhu; Daniel L Gillen; Joshua D Grill
Journal:  Alzheimer Dis Assoc Disord       Date:  2022-04-29       Impact factor: 2.357

4.  Framework for creating storytelling materials to promote African American/Black adult enrollment in research on Alzheimer's disease and related disorders.

Authors:  Renã A S Robinson; Ishan C Williams; Judy L Cameron; Keisha Ward; Melissa Knox; Melita Terry; Lisa Tamres; Uchenna Mbawuike; Marita Garrett; Jennifer H Lingler
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Authors:  Emily A Largent; Jason Karlawish; Joshua D Grill
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6.  Study partner types and prediction of cognitive performance: implications to preclinical Alzheimer's trials.

Authors:  Michelle M Nuño; Daniel L Gillen; Joshua D Grill
Journal:  Alzheimers Res Ther       Date:  2019-11-27       Impact factor: 6.982

7.  Experiences of Participation in a Multimodal Preventive Trial MIND-ADMINI Among Persons with Prodromal Alzheimer's Disease: A Qualitative Study.

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8.  The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations.

Authors:  Rachel L Nosheny; Rebecca Amariglio; Sietske A M Sikkes; Carol Van Hulle; Maria Aparecida Camargos Bicalho; N Maritza Dowling; Sonia Maria Dozzi Brucki; Zahinoor Ismail; Kensaku Kasuga; Elizabeth Kuhn; Katya Numbers; Anna Aaronson; Davide Vito Moretti; Arturo X Pereiro; Gonzalo Sánchez-Benavides; Allis F Sellek Rodríguez; Prabitha Urwyler; Kristina Zawaly
Journal:  Alzheimers Dement (N Y)       Date:  2022-10-04

Review 9.  Study partners should be required in preclinical Alzheimer's disease trials.

Authors:  Joshua D Grill; Jason Karlawish
Journal:  Alzheimers Res Ther       Date:  2017-12-06       Impact factor: 6.982

  9 in total

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