The COVID-19 pandemic has had wide-ranging health impacts outside of infection with the coronavirus itself. From remote medical visits and monitoring to adoption of decentralized clinical trials (DCT), both clinical care and research have been significantly impacted by the pandemic.
Alzheimer’s and dementia patients are among some of the most vulnerable and high-risk patient populations not only with respect to contracting COVID-19, but also being burdened by adapting to remote health monitoring and trial participation. In addition, pandemic lockdowns also had significant psychological and emotional consequences for Alzheimer’s and dementia patients, as lockdowns exacerbated social isolation.
At the Alzheimer’s Association International Conference (AAIC) 2021 this year, the impacts of COVID-19 on Alzheimer’s patients and disease research were discussed in several sessions during the week-long meeting. Experts shared study findings on the adoption of new research methods involving remote testing and trials during the pandemic, with insights into which approaches favored Alzheimer’s patients, their caregivers and providers.
Remote Cognitive Assessments
A large part of dementia and Alzheimer’s research and clinical care involves routine cognitive assessments. These are typically conducted in person in clinical labs at research institutes. However, most clinical trials were either disrupted or temporarily halted during the pandemic as researchers scrambled to quickly implement remote modes of assessment and monitoring to ensure trial continuity. For many researchers, patients and patient caregivers alike, shifting to remote setups was unchartered territory.
In-person testing has been the traditional method of evaluation in longitudinal Alzheimer’s studies. However, traditional modes of cognitive assessments have not always been necessarily preferred over newer modes.
“Even before the pandemic, it was acknowledged that [the traditional] testing mode is expensive and not [always a] part of a participant’s preferences, [with] the issue of the ecological validity of the results,” said Dr. Graciela Muniz Terrera, senior lecturer in biostatistics and epidemiology at the Centre for Dementia Prevention at the University of Edinburgh.
Prior to the pandemic, technological advances had been allowing for the implementation of remote testing, but the lockdowns accelerated the need to move to decentralized models. With COVID-19, researchers had to shift to new testing modes to maintain the continuation of studies, making the feasibility of remote testing critical.
Longitudinal studies involve the evaluation of change over time, making it important to ensure continuity. Change can be driven by various factors, including actual, true change in the underlying cognitive function being assessed, properties of the test, including its reliability, and differential performance on test questions across time (for example, practice effects). Some of these can lead to biased assessment.
Factors that concern the testing modality, such as familiarity with technology, internet speed, environment quality and access to devices, can also have an impact on the quantification of change, leading to biased results, explained Dr. Terrera. Participant health is also important, such as their hearing and ability to comprehend and follow instructions. All of these factors need to be understood in terms of how they impact outcomes of interest.
Dr. Terrera’s research group conducted a literature review to look at which remote testing modes could be best implemented during the pandemic. The researchers decided to conduct a review of phone and videoconference methods in older adults with and without dementia, which are populations that were excluded in previous studies on remote testing modalities. They found that while videoconferencing was promising, there was limited applicability to home administration and among individuals with severe dementia. Overall, study of methodological evaluations was limited, with evidence of the utility of phone assessments being weaker than videoconferencing. Telephone studies in populations with dementia and mild cognitive impairment (MCI) were limited altogether.
Ideally, different testing modes should be used to fairly calibrate test results. There is a need for a “battery of psychometric tools that permit the rigorous evaluation of change over time and testing modes,” said Dr. Terrera. However, this has not been possible during the pandemic because in-person testing could not be performed.
Nevertheless, “more fluid dialogue across disciplines to gain confidence on comparability of data over time and testing modes,” said Dr. Terrera.
Teleneuropsychology: Considerations and Barriers
Dr. Sonia Maria Dozzi Brucki, assistant professor, University of São Paulo, Brazil, discussed the concept of teleneuropsychology, which is basically any kind of evaluation by videoteleconferencing or by telephone. The practice has been established in older adults with or without cognitive impairments, with many studies having proved its feasibility and reliability.
Dr. Brucki discussed some important considerations around teleneuropsychology, which include internet access and accessibility to broadband. Overall, there are significant gaps in internet access between high-income and low-income countries. Dr. Brucki said internet and broadband access can vary across regions within the same country and are linked to differences in environments, cultural backgrounds and socioeconomic profiles that influence internet and broadband access. She said such is the case in many South American countries, like Brazil.
Digital literacy can also vary across participants. Moreover, differences in internet uptake are linked primarily to age and education. According to the Organisation for Economic Co-operation and Development (OECD) digital economy outlook 2017 report, in 2016, less than 63 percent of individuals aged 65 to 74 used the internet. And education appears to be a much more important factor in internet usage in older people than among younger people.
Telephone-based cognitive assessment (TBCA) screening tests have been around and studied for some time now, but their implementation has lagged, something that the COVID-19 pandemic changed. TCBA screening tests to assess cognitive status — including standard tests such as telephone interview for cognitive status (TICS), mini-mental state examination (MMSE) and the Montreal cognitive assessment (MoCA), and its telephone version (T-MoCA) — are well characterized.
Teleneuropsychology Guidelines: The Latin America Example
Dr. Brucki explained how there is currently no data on teleneuropsychology in Latin America, which prompted the formulation of guidelines, to be published in the Archives of Neurospsychology, based on expert opinions. This initiative was largely spurred by the realized need for teleneuropsychology during the pandemic.
The main aspects of the guidelines include informed consent (recorded verbal consent or an electronic signature can be used), ensuring that the patient is suited for a teleneuropsychology assessment and inquiring whether a caregiver can facilitate the process. Logistically, it should be seen whether there is adequate equipment and software for teleneuropsychological assessment and whether there is a private and silent environment free from distractions for it. The guidelines do not recommend teleneuropsychology for patients with severe dementia.
Pros and Cons of Teleneurospsychology
There are both pros and cons of technology-based assessments, with positive aspects that include touchscreen devices that enable direct interaction, have lower motor demands, are easy to use and don’t always require previous experience.
Patients can also attend tests from any location, which can decrease no-show rates and improve access and timeliness of care. There is also a lessened burden on patients and their caregivers with respect to reduced costs associated with transportation and caregivers’ potential time away from work. Examination by phone is even easier as it does not require sophisticated equipment. Patients and caregivers could develop/enhance additional digital skills, and online activities for rehabilitation could also be made possible, explained Dr. Brucki.
From the standpoint of the tests themselves, technological assessments can allow for minimization of examiner effects, which can compromise the objectivity of the study. In addition, technology-based evaluations can allow for more precise measurements and scoring, as well as automation in scoring and interpretation and analysis with sophisticated algorithms. Practice effects can be minimized by having multiple alternate forms of the test and overall, technology can allow for more standardized administration.
In addition to heterogeneity in education levels, some other challenges or negatives associated with technological assessments involve the technology itself. For example, there can be differences in people’s familiarity with technology as well as their general attitude or anxiety towards technology. And digital literacy not only applies to patients, but also their caregivers. As previously discussed, reliable internet and broadband access can be significant barriers in remote, technological testing. Physical factors such as visual or hearing impairments can pose to be a challenge to navigate. For providers, not being able to see patients or their reactions by phone can be less than ideal in some cases.
There are a number of overarching challenges with teleneuropsychology, apart from challenges with the technologies themselves. Inclusion people from varying socioeconomic backgrounds to to facilitate service uptake and promote equity in access is a key consideration. While tests should be culturally sensitivity, there must also be some level of uniformity of tests used across countries to implement some form of standardization. Confidentiality of patient data and privacy is also critical.
The future of teleneuropsychology therefore includes harmonizing cognitive tests across countries and developing a unique databank for cognitive and functional measures, said Dr. Brucki. Development of electronic interfaces, such as tablets, touchscreens, virtual reality and wearables that don’t introduce biases based on advanced digital literacy or general education level is also important.
Patient-Centric Best Practices for Remote Cognitive Assessments
Dr. Maiya R. Geddes, assistant professor, department of Neurology and Neurosurgery, McGill University, gave a talk on best practices for remote assessment of cognitively impaired adults, with insights into current practices and future directions for remote cognitive assessments.
During the pandemic, Dr. Geddes was part of the Alzheimer Society of Canada’s taskforce that assembled a framework for assessing cognition remotely, which addressed both telephone and videoconferencing modalities.
Key to the framework is that, “Ethical decision making [is] central to all stages. The same ethical principles that apply to in-person encounters also apply to telemedicine,” said Dr. Geddes.
Therefore, there must be an “ethical adoption of technology and the interests and welfare of patient come first,” she said.
This involves obtaining verbal consent with transparent disclosure of rationale and limitations of remote cognitive assessment. Knowing a patient’s location is also important to handle imminent risk, explained Dr. Geddes. In addition, verbal and non-verbal cues that convey empathy are vital as it is known that empathy impacts outcomes.
Weighing Risks vs. Benefits
The key to successful implementation of remote cognitive assessments is weighing the benefits against risks.
Benefits of remote assessments include enhanced access to specialist assessment to facilitate diagnosis; managing symptoms with pharmacological or behavioral interventions; minimizing transportation and other costs; and overall convenience and comfort.
Risks include privacy/confidentiality; data quality; continuity of care; inability to read body language to assess comfort/discomfort, uncontrolled environment; ensuring equitable access across sociodemographic groups; perceptual, language and cognitive barriers; missing signs and symptoms that can be treated (which can necessitate asking patients to come in for in-person care when necessary); and diagnostic disclosure.
The framework also provides logistical recommendations, which include use of an encrypted platform that is compatible across devices; two-factor identity verification; the provider and patient being in quiet, private rooms; optimization of sensory input/output; and contingencies for technical failures such as having the patient’s phone number on hand if videoconferencing is being used and fails.
The patient, clinician and care partner/caregiver make up an important triad in any assessment. Prior to a telemedicine encounter, it is important to identify the informant, who is a person that knows the patient well and can help with setup of the appointment. Dr. Geddes said that strategies that maximize patient privacy and minimize patient and caregiver burden are central. The patient, clinician and care partner should all have access to technology and be comfortable with its use, and telemedicine education resources should be provided.
Verbal responses are preferred and more feasible for patients and families, explained Dr. Geddes. As such, there is ample evidence for remote tools that involve verbal responses such as cognitive assessments by telephone. For example, TICS is the most widely and best validated telephone measure that has been shown to have high sensitivity and specificity (94 percent and 100 percent, respectively) and is highly correlated with MMSE. However, there can be issues such as potential for cultural bias and potentially limited utility in MCI diagnosis.
Cognitive assessment by videoconference scores have been found to be generally comparable to in-person, said Dr. Geddes. Both MMSE and MoCA have been demonstrated to be reliable when comparing remote videoconference to in-person testing. However, variances in age and internet speeds, particularly when scores are close to cut-offs and tasks involve more motor responses such as clock drawing or severe disease, can impact results.
Continuity of Care
“After a cognitive assessment, it is critical to ensure continuity of care,” said Dr. Geddes. This should involve the provider being accessible for future guidance, creation of a medical record of the telemedicine encounter and communication of the management plan with the patient, care partner and referring clinician. Dr. Geddes emphasized facilitating support for patients and caregivers following a difficult diagnosis by providing educational materials, social work referral and community resources.
The future of telemedicine will need to encompass improvements in technological, logistical and patient considerations. This involves valid and reliable instruments to consideration of language biases, sensorimotor limitations, education and sociodemographic factors.
Dr. Geddes said that norms are still lacking, which is why there is a need for additional best practice protocols. Strategies to minimize risks, for example, by developing more intuitive videoconferencing platforms and integrated monitoring tools are recommended, she said.
By and large, remote cognitive assessment has been shown to have good feasibility, with patients and caregivers being generally acceptable of this mode of assessment. The literature and current practices support the implementation of telemedicine or teleneuropsychology, despite some of the inherent challenges. Informed consent, informant history and patient privacy and autonomy are central to ensuring patient centricity in remote assessments.
Key to advancing telemedicine is focusing on patient-centric research to determine feasibility and accessibility. “Further work is needed to determine the validity, barriers and outcomes of remote cognitive assessment to understand whether gaps are being narrowed or widened for access,” said Dr. Geddes.
The COVID-19 pandemic continues to be a time of learning, execution and implementation — bundled into the same timeframes and frameworks — of new modes of cognitive testing for Alzheimer’s and dementia patients. Much has been learned from the experience, with formulation of best practice guidelines based on continuing insights into how patients can be best supported under remote conditions.