Reasons for Non-Participation in an Actigraphy Study in an Alzheimer’s Disease Center Registry

Abstract When recruited individuals decline to participate in research, it can lead to sampling bias, increased costs, and extended duration of data collection. Understanding reasons why eligible participants decline participation may improve study enrollment rates. We aimed to understand barriers to recruitment and data collection in older adults with and without Alzheimer’s disease in the University of Kansas Alzheimer’s Disease Center Registry annual visit. We recruited Registry participants to join an observational sub-study using wrist-worn actigraphy to measure physical activity and sleep. We analyzed reasons for non-enrollment from encounters with non-participating individuals. Of 104 encounters, 37 were never recruited due to appointment cancellation, rescheduling, or no-show. Of the remaining encounters, the most common reasons for non-participation were physical limitations (N = 13), study logistics (e.g., limited supplies; N = 12), participant travel plans (N = 10), and unknown (N = 8). Other categories (N = 6) included disinterest, study partner concerns about pragmatics (e.g., fear that an individual with AD would lose the ActiGraph), problems with the study design (e.g., lack of feedback to participants), and participants’ limited availability or deferment to a later date. These findings offer insight into potential avenues to overcome barriers to participation in older adults already engaged in ongoing research through an Alzheimer’s Disease Center Registry. Researchers could benefit from adapting study procedures to correct for reasons of non-participation. For example, giving more education and reassurance to potential participants about observation and giving feedback regarding activity patterns.

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Assessing Alzheimer’s Disease Specific Barriers to Enrollment in an Observational Actigraphy Study

Innovation in Aging ◽

10.1093/geroni/igaa057.904 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 282-283

Author(s):

Genna Losinski ◽

Alex Laffer ◽

Hilary Hicks ◽

Amber Watts

Keyword(s):

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Validity Of Results ◽

Ongoing Research ◽

Use Of Technology ◽

Study Partner ◽

Barriers To Enrollment ◽

The Individual ◽

Partner Involvement ◽

The University

Abstract There are unique challenges to recruit and enroll individuals with Alzheimer’s disease (AD) into research studies, and typical barriers to participation include the need for study partner involvement, use of invasive procedures (e.g., lumbar punctures), and lack of awareness of ongoing research. Failure to enroll this population impacts generalizability and external validity of results. The current study sought to explore reasons for non-participation in individuals with AD enrolled in the University of Kansas Alzheimer’s Disease Center (ADC) Registry. Participants were approached at their annual registry visit and asked to participate in an observational sub-study that utilized wrist-worn actigraphy to measure physical activity and sleep over a one-week period. Of the thirty-six non-participation encounters that were recorded over a 2.5 year data collection period, 28% were never recruited due to appointment cancellation, rescheduling, or no-show. Of the remaining encounters, the three most common reasons for non-participation included: physical limitations of individuals with AD (15%), unknown (28%), and study partner concerns regarding use of technology in individuals with impaired cognition due to AD (25%). Multiple study partners were concerned that the individual with AD would lose the watch, remove the watch from the wrist, or become irritated while wearing it. Findings suggest that the use of technology such as actigraphy presents an additional barrier to enrollment that is unique to individuals with AD. Future studies should consider potential interventions to address study partner concerns regarding use of technology in individuals with AD.

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COMPARING DAILY PHYSICAL ACTIVITY PATTERNS IN OLDER ADULTS WITH AND WITHOUT ALZHEIMER’S DISEASE

The Gerontologist ◽

10.1093/geront/gnw162.165 ◽

2016 ◽

Vol 56 (Suppl_3) ◽

pp. 40-40

Keyword(s):

Physical Activity ◽

Alzheimer’S Disease ◽

Older Adults ◽

Alzheimer's Disease ◽

Activity Patterns ◽

Daily Physical Activity ◽

Physical Activity Patterns

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Cognitive control constrains memory attributions

Behavioral and Brain Sciences ◽

10.1017/s0140525x19001869 ◽

2019 ◽

Vol 42 ◽

Author(s):

Colleen M. Kelley ◽

Larry L. Jacoby

Keyword(s):

Alzheimer’S Disease ◽

Older Adults ◽

Alzheimer's Disease ◽

Traumatic Brain Injury ◽

Brain Injury ◽

Cognitive Control

Abstract Cognitive control constrains retrieval processing and so restricts what comes to mind as input to the attribution system. We review evidence that older adults, patients with Alzheimer's disease, and people with traumatic brain injury exert less cognitive control during retrieval, and so are susceptible to memory misattributions in the form of dramatic levels of false remembering.

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Partner-Specific Communication Deficits in Individuals With Alzheimer's Disease

American Journal of Speech-Language Pathology ◽

10.1044/2020_ajslp-19-00094 ◽

2020 ◽

pp. 1-15

Author(s):

Eun Jin Paek ◽

Si On Yoon

Keyword(s):

Alzheimer’S Disease ◽

Older Adults ◽

Alzheimer's Disease ◽

Referential Communication ◽

Sorting Task ◽

Audience Design ◽

Healthy Older Adults ◽

Communication Task ◽

Design Skills ◽

Referential Expressions

Purpose Speakers adjust referential expressions to the listeners' knowledge while communicating, a phenomenon called “audience design.” While individuals with Alzheimer's disease (AD) show difficulties in discourse production, it is unclear whether they exhibit preserved partner-specific audience design. The current study examined if individuals with AD demonstrate partner-specific audience design skills. Method Ten adults with mild-to-moderate AD and 12 healthy older adults performed a referential communication task with two experimenters (E1 and E2). At first, E1 and participants completed an image-sorting task, allowing them to establish shared labels. Then, during testing, both experimenters were present in the room, and participants described images to either E1 or E2 (randomly alternating). Analyses focused on the number of words participants used to describe each image and whether they reused shared labels. Results During testing, participants in both groups produced shorter descriptions when describing familiar images versus new images, demonstrating their ability to learn novel knowledge. When they described familiar images, healthy older adults modified their expressions depending on the current partner's knowledge, producing shorter expressions and more established labels for the knowledgeable partner (E1) versus the naïve partner (E2), but individuals with AD were less likely to do so. Conclusions The current study revealed that both individuals with AD and the control participants were able to acquire novel knowledge, but individuals with AD tended not to flexibly adjust expressions depending on the partner's knowledge state. Conversational inefficiency and difficulties observed in AD may, in part, stem from disrupted audience design skills.

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Auditory Dysfunction in Alzheimer's Disease

Perspectives on Gerontology ◽

10.1044/gero15.1.4 ◽

2010 ◽

Vol 15 (1) ◽

pp. 4-11 ◽

Cited By ~ 1

Author(s):

Sridhar Krishnamurti

Keyword(s):

Alzheimer’S Disease ◽

Older Adults ◽

Alzheimer's Disease ◽

Health Care ◽

Care Setting ◽

Neurodegenerative Disorder ◽

Disease Process ◽

Clinical Protocols ◽

Speech Language Pathologist ◽

Auditory Dysfunction

Alzheimer's disease is neurodegenerative disorder which affects a growing number of older adults every year. With an understanding of auditory dysfunction in Alzheimer's disease, the speech-language pathologist working in the health care setting can provide better service to these individuals. The pathophysiology of the disease process in Alzheimer's disease increases the likelihood of specific types of auditory deficits as opposed to others. This article will discuss the auditory deficits in Alzheimer's disease, their implications, and the value of clinical protocols for individuals with this disease.

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