Virtual care for patients with Alzheimer disease and related dementias during the COVID-19 era and beyond

KEY POINTS

Digital care has the potential to enhance entry to well being look after folks with Alzheimer illness and associated dementias, particularly within the context of the coronavirus illness 19 (COVID-19) pandemic.
Videoteleconferencing is a well-studied technique of digital care that has efficiently been used to remotely assess, diagnose and handle such sufferers.
Profitable telemedicine packages usually have entry to supplemental scientific data to assist in prognosis and contain interdisciplinary groups to handle affected person complexity.
Proof concerning direct-to-home digital look after folks with Alzheimer illness and associated dementias is missing; this mannequin is related to distinctive challenges that have to be thought-about as digital care turns into a extra widespread method to well being care supply.

In the course of the coronavirus illness 2019 (COVID-19) pandemic, the Canadian Medical Affiliation and provincial well being authorities suggested physicians to offer digital care to sufferers the place attainable. Digital care, or telemedicine, has been outlined as “any interplay between sufferers and/or members of their circle of care, occurring remotely, utilizing any types of communication or data applied sciences, with the purpose of facilitating or maximizing the standard and effectiveness of affected person care.”1 Such care has been more and more used as a way of overcoming bodily limitations to well being care provision, notably within the context of enhancing availability and accessibility in rural and distant areas.2 Extra not too long ago, the bodily distancing measures necessitated by the pandemic have created an pressing crucial to combine digital care into current well being care infrastructure.

Folks with Alzheimer illness and associated dementias (Box 1) might face distinctive challenges in securing entry to crucial well being care, akin to difficulties recognizing their want for medical care, speaking well being considerations and navigating complicated well being techniques.7^,8 These challenges could also be compounded in the course of the COVID-19 pandemic, as individuals who usually depend on in-person help to finish each day duties, akin to transportation to and attendance at medical appointments, could also be disproportionately affected by the necessity for bodily distancing.9 Modifications to a affected person’s regular routine and helps can also irritate sufferers’ neuropsychiatric signs and put caregivers at elevated danger of burnout.10^–12 Furthermore, a 2016 analysis predicted that the variety of folks residing with dementia would practically double inside 15 years,13 which signifies that new, efficient and cost-effective fashions of well being care supply for this inhabitants are urgently wanted.

Field 1:

Alzheimer illness and associated dementias

Cognitive impairment is a spectrum, from gentle cognitive impairment3 to dementia, relying on the severity of the impairment and its impact on each day functioning. Alzheimer illness and associated dementias are a bunch of neurodegenerative illnesses in which there’s a progressive lack of cognition affecting each day perform. Though Alzheimer illness, with or with out cerebrovascular illness, is essentially the most prevalent explanation for dementia,4 different causes of dementia embrace dementia with Lewy our bodies5 and frontotemporal lobar degeneration.6

Digital care holds promise in addressing many of those challenges whereas permitting sufferers to obtain care from the security of their properties or long-term care services.14 Nonetheless, speedy and widespread adoption of digital care requires cautious consideration. We assessment literature throughout a broad spectrum of specialties, together with neurology, geriatrics and psychiatry, to synthesize the proof and suggestions for generalists and specialists in search of to transition their look after sufferers with dementia to a digital platform, contemplating potential limitations to adoption (Box 2).

Field 2:

Proof used on this assessment

We searched MEDLINE, Embase and PubMed for articles revealed between Jan. 1, 2000, and Jan. 1, 2021. Utilizing a technique consisting of key phrases regarding telemedicine and dementia, we included all articles that targeted on using digital look after a scientific encounter to both assess or handle people with gentle cognitive impairment, Alzheimer illness or associated dementias, however not those who targeted on telerehabilitation, cellular purposes and gadgets or digital caregiver help. We reviewed the literature, organized it into thematic classes and synthesized findings (see Appendix 1, out there at www.cmaj.ca/lookup/doi/10.1503/cmaj.201938/tab-related-content for particulars concerning methodology). Given the restricted variety of randomized scientific trials on this subject, many of the proof on this assessment comes from check–retest research, observational research, in addition to retrospective evaluations of telemedicine packages. Proof for the suggestions in Table 2 predominantly come from knowledgeable opinion and steering from earlier telemedicine research and packages.

Can digital visits be used to evaluate and diagnose dementias?

Assessing a affected person for a attainable prognosis of Alzheimer illness or a associated dementia entails taking a radical historical past, figuring out the extent of functioning, interviewing a third-party informant, performing cognitive and neurologic examinations and reviewing related investigations. Sure facets of this diagnostic course of are higher suited to the digital realm than others. Provided that dementias are scientific diagnoses primarily based on knowledgeable evaluation,3^,4 teleneurology work teams have thought-about dementia to be doubtlessly amenable to distant analysis.15

Phone

Phone-based devices for cognitive screening have been utilized in epidemiological and scientific contexts.16 The Phone Interview for Cognitive Standing (TICS), a preferred instrument modelled after the Mini-Psychological State Examination (MMSE), has wonderful sensitivity (94%) and specificity (100%) in dementia screening, with good correlation between MMSE and TICS scores.17 The modified TICS (TICS-M) could also be helpful in distinguishing folks with gentle cognitive impairment from those that are cognitively wholesome due to its evaluation of verbal delayed recall,18^,19 though it might be restricted in precisely classifying folks throughout the spectrum of cognitive impairment.19 Different validated devices for cognitive screening embrace telephone-based MMSE devices and the telephone-based Montreal Cognitive Evaluation (t-MOCA),16^,20 although the latter has been validated solely in sufferers with cerebrovascular illness.21 Though a telephone-based method has been advised as an efficient technique of cognitive screening,16^,22 limitations embrace challenges in evaluating visuospatial impairment and naming. A brand new scientific prognosis of Alzheimer illness or a associated dementia in the end requires data past what telephone-based screening can presently present.16^,22

Videoteleconferencing

Videoteleconferencing (VTC) is probably going the one telemedicine modality with the potential to exchange in-person assessments when establishing a brand new prognosis of Alzheimer illness or a associated dementia.23 A 2017 meta-analysis discovered that neuropsychological check scores obtained by VTC are corresponding to these obtained in particular person, though larger inconsistencies have been seen with slower Web connections and older cohorts.24 A latest systematic assessment famous that cognitive impairment and using nontraditional evaluation strategies, together with using the house surroundings and a scarcity of supervision, posed potential challenges to the validity of distant cognitive assessments.25 Though particular person research of cognitive checks usually present good general reliability between in-person and VTC assessments,26^–36 their generalizability is restricted as they usually exclude sufferers with extreme listening to, visible or cognitive impairment.27^–29^,31^,34^,37

A well-designed longitudinal examine reported variations between VTC and in-person evaluation scores solely amongst sufferers with extreme cognitive impairment. Sufferers with extreme impairment had worse scores when assessed by VTC than in particular person, suggesting that extreme cognitive deficits could also be overestimated by utilizing telemedicine.37 Table 1 summarizes current proof, evaluating VTC to in-person administration of widespread cognitive evaluation checks in sufferers with cognitive impairment. Supplemental instruments, together with the Geriatric Despair Scale (GDS)26 and assessments of actions of each day residing have additionally been reliably administered over VTC.

Desk 1:

Abstract of current research evaluating videoteleconferencing to in-person administration of widespread cognitive evaluation checks for sufferers with cognitive impairment

Videoteleconferencing has confirmed helpful in remotely establishing a brand new scientific prognosis of dementia.28^,40^,41 In a small cohort examine of sufferers with undiagnosed cognitive impairment, the accuracy of the digital dementia evaluation was evaluated by evaluating diagnoses made in particular person to these revamped VTC. Glorious diagnostic settlement was famous between the two modalities.40 Subsequent research have discovered comparable outcomes.28^,41 Nonetheless, physicians in these research usually had entry to supplemental data, akin to findings from preliminary in-person neuropsychological testing,41 purposeful assessments40 or bodily examinations.40 As such, it is very important acknowledge the dangers and limitations of distant prognosis primarily based on cognitive checks and scientific standards initially designed for in-person utility.

Telemedicine packages have proven the feasibility of incorporating VTC to enhance entry and prognosis for sufferers with Alzheimer illness and associated dementias residing in rural communities. 42^–46 In these packages, sufferers travelled to a telemedicine clinic nearer to their properties to entry a specialist at a significant medical facility through VTC. Profitable packages concerned interdisciplinary groups to handle affected person complexity, medical and psychiatric comorbidities and psychosocial wants.43^–45 In response to the continuing must proceed diagnosing Alzheimer illness and associated dementias in the course of the COVID-19 pandemic, sensible pointers for the implementation of distant reminiscence clinics have not too long ago been outlined.47

Can digital visits be used for follow-up and administration?

The progressive nature of Alzheimer illness and associated dementias necessitates ongoing follow-up and administration of sufferers. Further obstacles to accessing in-person care might come up with illness development, akin to declining mobility, growing disorientation with schedule modifications, worsening neuropsychiatric signs and an growing reliance on caregivers. Digital care might reduce the disruptions that in-person visits pose to this inhabitants, lots of whom are frail, older adults.

Amongst folks with dementias, telemedicine packages have proven the feasibility of utilizing VTC to provoke and handle drugs, 44^,48^–51 join sufferers and households with help providers, 42^,48^,51 talk about problems with security and planning,44^,49^,51 decide whether or not extra laboratory, imaging or neuropsychological testing is required42^,48 and reassess sufferers for proof of cognitive decline.46^,49 For instance, having used VTC to handle sufferers over the span of 5 years, well being care suppliers at a reminiscence clinic have been in a position to establish when sufferers transitioned from gentle cognitive impairment to dementia.46

It isn’t but recognized whether or not digital care impacts scientific outcomes; nevertheless, current research appear to point out different advantages of this method. A randomized trial of 1560 sufferers with dementia and their caregivers discovered that month-to-month follow-up visits with collaborative care groups over the phone improved affected person high quality of life after 12 months in comparison with those that acquired customary care.52 In a potential cohort examine of sufferers with dementia, the annual modifications in MMSE scores between sufferers who acquired VTC visits in contrast with in-person visits have been comparable general.53 These with milder impairment within the telemedicine group confirmed a slower decline in MMSE scores over time in contrast with their counterparts who acquired in-person care, suggesting that sufferers with milder cognitive deficits could also be extra delicate to the advantages of telemedicine, 53 akin to improved entry to specialist care or extra frequent follow-up visits. Sufferers who acquired VTC follow-up care additionally continued pharmacological therapy for longer intervals than those that acquired in-person care.54 Lastly, VTC has been used to handle behavioural signs and reduce charges of hospital admission amongst sufferers with dementia residing in long-term care services.55^,56

What’s the affected person perspective on digital look after Alzheimer illness and associated dementias?

Affected person acceptance of and satisfaction with digital care is vital to the sustainability of digital well being care fashions. Older adults with these dementias seem to just accept using telemedicine for cognitive assessments, with excessive charges of satisfaction with VTC encounters.37^,40^,43^,44^,57 Sufferers, caregivers and physicians typically endorsed excessive ranges of satisfaction with using VTC for follow-up care as properly.48^,49^,58 Modality preferences amongst sufferers vary from a desire for VTC over inperson encounters37^,40 to no obvious desire.57 Recognized benefits of digital care embrace comfort from sources and time saved, and improved entry to specialist care.40^,42^–45 When explicitly calculated, implementing telemedicine provided important financial savings when it comes to cash, time and mileage.48 Most digital visits described in telemedicine packages are accomplished efficiently, though generally recognized limitations to person satisfaction usually associated to technical limitations, akin to diminished audio or visible high quality.27^,40^,42

Can sufferers be assessed and managed at residence with digital care?

Though telemedicine seems promising on this affected person inhabitants, most digital care analysis so far has targeted on VTC between 2 well being care services. This mannequin has the benefit of getting educated on-site personnel out there to facilitate the digital encounter, in addition to permitting for standardization of the evaluation surroundings.59 It will likely be vital to look at whether or not direct-to-home digital care is as promising, notably within the context of the present pandemic, throughout which staying house is crucial to well being and security.

Few research have examined direct-to-home VTC look after sufferers with Alzheimer illness and associated dementias.26^,60 In a single examine, dementia assessments have been discovered to be each possible and dependable when administered to sufferers of their properties; nevertheless, caregiver involvement was famous to be important to go to success.26 One other latest examine discovered that the majority households, when given the choice, declined VTC residence visits for follow-up dementia care due to lack of entry to applicable expertise, lack of technological literacy or lack of in-home help to assist facilitate the encounter. Those that accepted VTC residence visits have been as happy with them as they have been with these accomplished in particular person. 60 A number of clinics have additionally described their experiences transitioning from in-person care supply to a direct-to-home VTC mannequin for sufferers with cognitive impairment in the course of the pandemic. 51^,61 Given the dearth of high quality proof involving the direct-to-home method, additional consideration is required to judge its use on this affected person inhabitants.

What are main limitations to digital direct-to-home look after sufferers with dementia?

A digital interface for direct-to-home dementia care has limitations. Limitations to digital care embrace these regarding expertise, the doctor–affected person therapeutic alliance, the diagnostic course of and the COVID-19 pandemic (see Table 2 for a listing of limitations to digital care and related suggestions).

Desk 2:

Limitations to digital direct-to-home look after sufferers with Alzheimer illness and associated dementias

Most sufferers with Alzheimer illness and associated dementias are older adults who might have larger problem accessing technological gadgets or Web providers wanted to help digital visits.62^,74 This may be notably difficult in rural or distant communities that lack the mandatory sources required for telemedicine providers.2 Past entry, some folks might not have the technological literacy and luxury with utilizing computer systems, Web or VTC platforms, which may be additional compounded by sensory impairments that accrue with growing age.70^,75^,76 A big cross-sectional examine from america discovered that 38% and 20% of adults aged 65 years and older didn’t really feel ready for VTC- and telephone-based telemedicine, respectively.74 Affected person desire must be thought-about when deciding on a telemedicine modality, and if crucial, phone could also be used both concurrently with VTC or by itself.14^,63^,64 Moreover, the supply of a 3rd get together to facilitate the digital go to, akin to a caregiver, is important to the success of direct-to-home look after dementia and have to be thought-about by well being care professionals providing digital care to this inhabitants.26^,64^,70

Digital visits are vulnerable to privateness breaches due to their reliance on digital transmission and unregulated residence environments. Telemedicine platforms must be safe and use solely well being care modes that don’t accumulate affected person data, however, even then, information breaches can happen. Knowledgeable consent concerning the dangers of digital care have to be obtained from the affected person or their substitute decision-maker at every go to. Affected person id must also be verified at every go to, and sufferers must be instructed to conduct the go to in a non-public space.14^,64

Incorporating a targeted neurologic examination into the digital go to for an evaluation of Alzheimer illness or a associated dementia has not been well-studied. Though a full neurologic examination is just not important for the prognosis of gentle cognitive impairment or Alzheimer illness,3^,4 the constraints of the digital neurologic examination pose a singular problem for recognizing dementias related to cerebrovascular illness or atypical dementias inside the Parkinson-plus spectrum, which might current with focal deficits or extrapyramidal indicators on examination, respectively.77 That stated, some traditional parkinsonian findings may be visually assessed, and telemedicine has been used to evaluate motor perform amongst sufferers with idiopathic Parkinson illness. 78 Latest papers present steering as to how the neurologic examination may be tailored for digital administration, though these methods require validation.72^,73 In the end, physicians should use scientific judgment to establish conditions by which the constraints of a digital go to warrant conversion to an in-person appointment.14^,68

Lastly, for digital care to change into sustainable, inequities in entry have to be rectified. A latest cross-sectional evaluation within the US discovered that traits akin to race, ethnicity, language, earnings and caregiver help have been main components contributing to geriatric entry to video-based telemedicine.79 Systemic measures should be carried out to make sure that digital care is uniformly accessible no matter sociodemographic components.

Conclusion

Digital care is quickly evolving and can proceed to increase as expertise advances to fulfill well being care system calls for. Analysis on this subject in response to the COVID-19 pandemic has elevated, but many questions stay unanswered (Box 3). Present literature means that cognitive evaluation instruments administered by telemedicine are typically dependable, the implementation of a telemedicine system for assessing and managing Alzheimer illness and associated dementias is possible and the digital interface seems properly accepted. Given the present limitations of digital care, nevertheless, most specialists counsel that digital visits be used to complement in-person encounters as a substitute of changing them, when attainable.20^,59

Field 3:

Unanswered questions

Is digital care applicable throughout the spectrum of cognitive and sensory impairment, together with for these with extra extreme deficits?
Can digital care enhance scientific outcomes in sufferers with Alzheimer illness and associated dementias and different neurodegenerative illnesses?
Is the direct-to-home method to digital care possible, acceptable, and efficient for folks with Alzheimer illness and associated dementias?
Is digital care equally accessible to all folks with Alzheimer illness and associated dementias? If not, what measures may be taken to make sure equitable entry?

The COVID-19 pandemic has catalyzed a broader utility of digital care to maintain susceptible populations safely of their properties. In the end, offering sufferers, households and well being care professionals with help, entry, schooling and empowerment shall be crucial to beat limitations and facilitate uptake of digital look after these with Alzheimer illness and associated dementias. Collaborative efforts amongst clinicians and sufferers, bolstered by help from current well being care infrastructure, shall be required to make sure that profitable adoption and innovation on this subject are actualized.

Footnotes

Competing pursuits: Mario Masselis declares grants exterior the submitted work from the Canadian Institutes of Well being Analysis, the Ministry of Financial Improvement and Innovation of Ontario, the Ontario Mind Institute, the Sunnybrook AFP Innovation Fund, the Alzheimer’s Drug Discovery Basis, Mind Canada, the Coronary heart and Stroke Basis Centre for Stroke Restoration, the Weston Mind Institute, Roche, Washington College, Axovant and Alector. He additionally stories private charges exterior the submitted work from Arkuda Therapeutics, Ionis, Henry Stewart Talks, Alector, Biogen Canada and Wave Life Sciences. He’s additionally an affiliate editor with Present Pharmacogenomics and Personalised Drugs. No different competing pursuits have been declared.
This text has been peer reviewed.
Contributors: All the authors contributed to the conception and design of the work, and the acquisition, evaluation and interpretation of information. All the authors drafted the manuscript, revised it critically for vital mental content material, gave closing approval of the model to be revealed and agreed to be accountable for all facets of the work.
Funding: Mario Masellis acquired funding from the Ontario Neurodegenerative Illness Analysis Initiative (ONDRI) for the analysis, authorship and publication of this text. ONDRI receives analysis help from the Ontario Mind Institute, an unbiased nonprofit company, funded partially by the Ontario authorities.
Disclaimer: The opinions, outcomes and conclusions are these of the authors and no endorsement by the Ontario Mind Institute is meant or must be inferred.

That is an Open Entry article distributed in accordance with the phrases of the Inventive Commons Attribution (CC BY-NC-ND 4.0) licence, which allows use, distribution and copy in any medium, supplied that the unique publication is correctly cited, the use is noncommercial (i.e., analysis or instructional use), and no modifications or variations are made. See: https://creativecommons.org/licenses/by-nc-nd/4.0/

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