Challenges to dementia care during COVID-19: Innovations in remote delivery of group Cognitive Stimulation Therapy

Older adults are most at-risk for COVID-19, with its mortality risk increasing with age, particularly in those with chronic conditions (Lloyd-Sherlock, Ebrahim, Geffen, & McKee, 2020). As part of the fight against community transmission of COVID-19, many parts of the world went into lockdown during the first half of 2020. People are required to avoid face-to-face social contact and to stay home. Such drastic measures can have many direct and indirect effects on the health and psychosocial well-being of older adults. For example, older adults who were previously mobile but are now housebound are at risk of developing frailty (Davies, Frost, Bussey, Hartmann-Boyce, & Park, 2020). They may become more anxious, angry, stressed, agitated and withdrawn (World Health Organization, 2020). Some older adults in self-isolation can also become lonely if they live alone and/or cannot access their usual community programmes and support (Armitage & Nellums, 2020; Lloyd-Sherlock, Ebrahim, Geffen, & McKee, 2020). Older adults with dementia living in the community often require support services to maintain their independence and functioning. The withdrawal of community services, including carer support and respite, during COVID-19 is likely to have a significant impact on people with dementia and their families. Therefore, supporting older adults with dementia and maintaining their well-being during COVID-19 has become an urgent public health concern.

During COVID-19, many people have adapted to a new way of working and relating with each using information and communication technologies (ICT). For example, the demands for videoconferencing platforms such as Zoom and Skype® have increased exponentially. There is some evidence that the use of ICT can facilitate older adults to participate in social networks and communities (Damant, Knapp, Freddolino, & Lombard, 2017). ICT, such as smart phones, tablets, smart home systems, robots and virtual reality, have also been used in dementia care delivery including memory and orientation problems support, safety and security, care delivery, medication management, cognitive interventions, leisure and activities, caregiver education and support, and training (Astell et al., 2019; Costanzo et al., 2020; García-Casal et al., 2017; Holthe, Halvorsrud, Karterud, Hoel, & Lund, 2018; Lee, 2015; Lorenz, Freddolino, Comas-Herrera, Knapp, & Damant, 2019; Rai, Cavalcanti Barroso, Yates, Schneider, & Orrell, 2019). Although technology-based interventions have gained some popularity in dementia research in the past two decades, their adoption by policy and practice has been slow (Astell et al., 2019). However, with the reduced availability of in-person support services for people with dementia during COVID-19, technology-based interventions that can be remotely accessed by people with dementia could be a way to bridge this gap.

In-home video telehealth is defined as “a live, synchronous encounter that employs a videoconferencing software” (Gately, Trudeau, & Moo, 2019). There is some literature on using in-home video telehealth to deliver interventions for people with dementia. Four studies using this approach were identified in three recently published systematic reviews (Batsis et al., 2019; Costanzo et al., 2020; Gately, Trudeau, & Moo, 2019). Burton and O’Connell, (2018) studied the use of cognitive rehabilitation for goals setting by telehealth videoconferencing in six people with subjective cognitive impairment, mild cognitive impairment or Alzheimer’s disease. They concluded that it was feasible to deliver the intervention but the researchers could not physically interact with the materials used during a virtual session and had to rely more on verbal cues to prompt the participants (Burton & O’Connell, 2018). Jelcic et al. (2014) used Skype® as a platform to deliver their cognitive rehabilitation programme that contained lexical tasks aimed at enhancing sematic verbal processing in 27 people with Alzheimer’s disease. They also concluded that it was feasible to deliver their programme, which may improve global cognitive performance (Jelcic et al., 2014). Meyer, Getz, Brennan, Hu, and Friedman (2016) found positive treatment effects with tele-rehabilitation-based anomia treatment using a telehealth platform (https://vsee.com/) in three patients with primary progressive aphasia. Similarly, Rogalski et al. (2016) conducted internet-based speech-language therapy using the Communication Bridge, a personalised Web application, in 34 participants with dementia and aphasia symptoms. They concluded that it was a feasible model to deliver the care for this clinical population who had an engaged caregiver and prior familiarity with a computer (Rogalski et al., 2016). None of these studies used a more socially interactive approach where multiple participants with dementia interact in a group format.

Here we report virtual Cognitive Stimulation Therapy (vCST) as a case example of how technology was used to deliver a group intervention for people with dementia during COVID-19. CST is an evidence based and cost-effective psychosocial group treatment for people with a diagnosis of mild to moderate dementia (MODEM, 2016; Woods, Aguirre, Spector, & Orrell, 2012). It is a structured and manualised cognitive intervention involving 14 sessions twice a week for seven weeks. There is also an option for maintenance CST (Orrell et al., 2014). The aim of CST sessions is to actively engage and stimulate people with dementia in a group of six to eight participants with two facilitators. CST has been shown to improve cognition, quality of life and communication; and is recommended for people with mild to moderate dementia in the UK’s NICE dementia guidelines (National Institute for Health and Clinical Excellence, 2018).

As an urgent response to provide a continuity of care and social connectedness during COVID-19, a group of CST facilitators in New Zealand, under the guidance of two CST trainers, moved their in-person CST to a virtual programme. A community of practice (COP) was created where CST facilitators could interact (such as discussions, collaborative activities, and relationship building), share their practice of experiences, and build a sense of community (Centers for Disease Control and Prevention, 2015). The Zoom videoconferencing platform was used for our two to three weekly COP online forums, which served many purposes and generated a number of activities among the CST facilitators, including designing a pathway to implement vCST, peer-reviewing the content of vCST, sharing learning from facilitating vCST, problem solving challenges, and sharing vCST resources. In the first two months of starting the COP, ten in-person CST groups were successfully transitioned to vCST. Approximately half of the people with dementia from the original in-person CST groups were able to participate in vCST. For those who could not participate, the main reasons were not having access to the Internet or an electronic device, or no supporter (e.g. a family member) was available to assist them with technology. Smaller number of participants with dementia in each vCST group allowed optimization of their online experience and interaction. Additional technology support was required, including 1:1 pre-training, paying attention to participants’ experience of technology during sessions, and reliance on supporters for setting up in-home videoconferencing. Our facilitators reported that vCST participants generally appreciated being able to ‘reconnect’ with each other virtually. From the facilitators’ perspective, it is feasible, with some adaptation, to use this in-home video telehealth approach to deliver CST. For example, facilitators routinely checked with each participant to ensure they can see and hear each other through their electronic device before commencing a session. A CST session typically starts with a theme song selected by the participants. Songs that have a fast tempo should be avoided because they do not transmit very well online. The facilitators came up with the idea of organizing their vCST session using a PowerPoint presentation, including embedded videos and music, and the ‘share screen’ function of Zoom. The ‘breakout rooms’ function on Zoom could be useful to encourage smaller group discussions between participants as it is generally more difficult for participants to interact with each other virtually than in an in-person CST group. In-person CST sessions usually lasts between 50 to 60 min; however, with the increasing recognition of ‘Zoom fatigue’, a vCST session should not last for more than 45 min.

For successful implementation, it is important that a technology-based intervention for older adults is accessible, affordable and easy to use (Chung, Demiris, & Thompson, 2016), and the technology works well in terms of its stability and reliability. These factors were considered when Zoom was chosen as the platform to deliver vCST. Many of the CST facilitators were existing Zoom users and familiar with its functions. Zoom has also been successfully used in a UK wide virtual facilitated group for women living with dementia (https://www.dementiavoices.org.uk/group/zoomettes/). Their 12-weeks pilot project offered a safe space for 10 women with dementia, who had little or no access to peer support in their area, to meet up for friendship and support and most participants found Zoom easy to use.

Our case example illustrated how COVID-19 has fast-tracked the adoption of technology in dementia practice, which is likely to stay beyond COVID-19. Technology has many potentials in enhancing the holistic management of dementia across the spectrum from prevention, risk reduction, early detection, diagnosis, assessment, care delivery and living well with dementia (Astell et al., 2019). An important benefit of in-person CST is the connection formed among people with dementia. Our vCST participants had previously met each other and the use of vCST in people with dementia who are CST novices is yet to be investigated, including its effectiveness compared with in-person CST. Future vCST research is also required to explore the experiences from the perspectives of people with dementia and their supporters. There are also challenges associated with the adoption of technology-based interventions by people with dementia. These include the lack of inclusion of people with dementia in the design and user-testing of these interventions, issues of accessing the Internet and electronic devices, impaired cognitive abilities in using technology, and adherence. Despite these limitations and challenges, vCST has many potential applications that would be worth exploring in the future. It can be made available to people who live in rural areas where there is no in-person CST programme in close proximity, those with no transport or have impaired mobility. It can also be offered as a personalized in-home treatment option tailoring for certain populations with dementia. For example, language specific CST groups are often not available for culturally and linguistically diverse (CALD) people with dementia because of resource issues (e.g. lack of a CALD CST facilitator) or the low number of people with dementia from the same culture living in a specific geographic location. vCST can effectively link CALD people with dementia and facilitators across geographical locations. An indeed, the videoconferencing platform could be a vehicle to promote the globalization of CST. International CST trainers and local facilitators can be virtually connected and involved in the implementation of vCST in different countries, including high-income countries supporting low- and middle-income countries. With this globalization, there will be an increase uptake of CST and more people with dementia will benefit. New migrants with dementia can also access a vCST programme in their home country, which could alleviate social isolation and allow a more meaningful reminiscence process.

The Chinese word “crisis” consists of two characters: danger and opportunity. The COVID-19 crisis has certainly resulted in many dangerous situations around the world, putting many people at risk of the infection along with people with dementia in self-isolation. However, COVID-19 has created opportunities for people to embrace technology, which maintained their connection with the outside world during self-isolation. These opportunities have also extended to older adults and dementia care delivery, resulting in a technology evolution in dementia practice.Health policy makers, service providers and clinicians should take hold of these innovative opportunities and support the technological transformation of dementia practice in the coming years.

Gary Cheung
Department of Psychological Medicine, School of Medicine University of Auckland, Auckland, New Zealand
[email protected]

Kathryn Peri
School of Nursing, The University of Auckland, Auckland, New Zealand

Acknowledgements

We would like to thank the following organisations that have contributed to our virtual Cognitive Stimulation Therapy Community of Practice: Dementia Auckland; Brains in Action, Dementia Wellington, Alzheimers Otago, Summerset, Alzheimers Nelson, Younger Onset Dementia Aotearoa Trust, Alzheimers Marlborough, Alzheimers New Zealand, Alzheimers Eastern Bay of Plenty.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This project received funding from Brain Research New Zealand (project number: 3715781).