eBooks Health & Social Care eBooks Online intervention for people with dementia and caregivers March 20, 2024 Dementia is a global healthcare issue, with over 55 million people with this condition worldwide and close to 10 million new cases per year Dementia affects one’s cognitive functioning, such as memory, language articulation, and executive function; the gradual cognitive decline over the progression of dementia hampers the ability of people with the condition to engage in social communication,(2,3) while along with the progression of the condition, one gradually loses his or her capability in activities in daily living (ADL),(4) which makes self-care and caregiving difficult. Psychoeducational programs for caregivers A systematic review indicated that as much as 80% of community-dwelling people with dementia are cared for by their family members.(5) The decline in cognitive and functional abilities of people with dementia poses significant challenges for family members to provide support at home. Family caregivers experience psychological distress such as high caregiving burden, depression and anxiety,(6,7) which can negatively impact their quality of life and physical health,(5,8) thereby impairing their ability to perform caregiving duties. Non-pharmaceutical interventions for people with dementia focus on the improvement or maintenance of cognitive and functional abilities, (9-11) ADL abilities, management of behavioural and psychological symptoms of dementia (BPSD)(12) such as apathy,(13) and safety such as prevention of wandering.(9,10,14) Non-pharmaceutical interventions for informal caregivers of people with dementia focus on caregiving knowledge, skill training and emotional support. Intervention in caregiver’s coping strategies can improve the quality of life of people with dementia.(15) Psychoeducational programs for caregivers of people with dementia can reduce caregivers’ anxiety and stress, increase their sense of social support and self-efficacy, and improve their quality of life.(16-18) Improvement of cognitive functions of people with dementia, good management of BPSD, and carer support, together with adequate support from the social welfare sector, can delay premature nursing home placement of people with dementia.(19-21) Multicomponent interventions that combine skill training, knowledge acquisition, and attuned caregiving strategies have been shown to have a greater impact on caregivers’ well-being compared to single-component interventions.(22) The limitations of in-person intervention Interventions for people with dementia are typically offered in the in-person format. There are, however, limitations that hinder their accessibility of intervention. People with dementia may become disoriented(23) or psychologically disturbed, such as upset or agitated,(24) and are more likely to wander(25) in unfamiliar environments, therefore affecting their participation and engagement in the intervention at day-care centres. Those with limited mobility face difficulties in travelling to training locations,(26) often requiring escort service, special equipment, and additional manpower. According to a survey conducted by the Jockey Club Centre for Positive Ageing (JCCPA) during the development of an online cognitive training program, up to 94.0% of users of the online cognitive training had not attended any in-person training prior to the program because they were unwilling to go to the training location (79.4%) and their physical issues made them difficult to attend in-person training (27.0%). People with dementia are also more likely to get lost(26) while travelling to daycare centres, and extra loss prevention measures need to be made. In addition, social services are often inadequate in rural areas, meaning people with dementia living in rural areas have more difficulty accessing in-person services unless they travel to urban areas, which may not be time- and cost-effective for them. The global COVID-19 pandemic that occurred between 2019-2023 drew attention to the importance of intervention for people with dementia and the limitations of in-person intervention. During the pandemic, many daycare centres ceased operation as an infection control measure. People with dementia were advised to stay at home as a social distancing measure because they were more likely to be infected, have severe symptoms and die if infected.(27,28) The cessation of in-person intervention and the social distancing and stay-at-home measures deprived people with dementia of necessary training and social connection, negatively impacting their well-being; studies found that they felt more lonely and isolated during the closure of daycare service,(29) they had worsened cognitive and functional abilities(30,31) as well as BPSD such as depression, anxiety, and agitation,(32) which did not only adversely affect their quality of life but also incurred greater caregiving stress and burden.(30,33) Family caregivers have difficulties in attending in-person intervention or support because of their caregiving duties and daily work. A study indicated that informal caregivers spend 5 – 20 hours every day to take care of their family members with dementia,(34) the extensive caregiving hours make it challenging for caregivers to commit to a fixed training schedule. In addition, working caregivers find it almost impossible to attend in-person intervention or support, which are mostly arranged in the daytime on weekdays. Caregivers of people with dementia often find it difficult to get suitable caregiving replacements,(35) such as daycare respite service or other family members, so they may not attend in-person intervention or support because they are unwilling to leave their care recipients unattended. The benefits of online intervention in dementia care Online intervention offers a viable alternative for people with dementia and their caregivers to receive training. Online intervention minimizes the geographical barrier, enabling people with dementia to access the training programs in a familiar environment (home) without the need for extensive travel as well as the risk of getting lost. People with dementia with impaired mobility or who live in remote areas can access training in their homes, so their right to receive intervention would not be affected by physical or geographical limitations. Flexibility is a key benefit of online intervention and support for caregivers. They have greater autonomy in terms of time management when they learn caregiving knowledge and skills in an “anywhere, anytime” manner through an online e-learning platform, and they need not leave the care recipients unattended. Online intervention caters for caregivers of various experiences in the sense that caregivers can select learning topics based on their caregiving expertise and situations; experienced caregivers can focus on specific skills relevant to the needs of their care recipients, while those new to dementia care can access introductory materials. When care recipients exhibit behaviours such as agitation, caregivers can quickly access relevant chapters on the online platform. A survey examining caregivers’ preference for online intervention found that their primary reasons for choosing online learning platforms were ease of accessibility from any location at any time, the ability to select relevant topics based on their needs, and saving travelling time, and they would like to learn BPSD management, communication skills, and how to delay the progression of dementia on the online platform.(36) There is a rising body of research evidence to affirm the effects of online intervention in a dementia context. A meta-analysis of twelve randomized controlled trials on computerized cognitive training demonstrated that multi-domain cognitive training through repeated and controlled online exercise could delay the decline in memory, attention, and problem-solving of people with mild Alzheimer’s disease and mild cognitive impairment.(37) A longitudinal study on computerized cognitive training indicated that the improvement could last for six to 12 months,(38) indicating that online cognitive training has short- and long-term benefits for people with dementia. There is development of turning cognitive training to caregiver-led intervention in mobile application format; initial evaluation showed that people with dementia and caregivers had positive acceptability towards the format, while subjects in mild dementia pointed out that the motivation and engagement would decrease if the contents were not mentally stimulating enough.(39) Since there may not be intensive, if not nil, manual guidance and instruction for computerized cognitive training, the design of the contents should be cautious to take various stages of dementia into account. Videoconferencing has been widely adopted to facilitate social interaction during the pandemic. A survey comparing video call usage between people with and without dementia showed that dementia severity did not affect video call usage,(40) affirming the feasibility of using such kind of platform to deliver intervention to people with dementia. A 6-week, 12-session cognitive intervention delivered through a videoconferencing platform has shown a positive effect on attention, memory, calculation, and language in individuals with mild cognitive impairment and mild dementia, and the effects were comparable to in-person intervention.(41) Improvement in social interaction has also been observed in cognitive training through the videoconferencing platform. An online dementia training in which facilitators invited participants to answer questions on visual stimuli shared on the screen of the videoconferencing platform was shown to foster a sense of solidarity among the participants as they were bonded by the shared experience during the training.(42) In addition, people with dementia could improve their physical well-being through online training. Participants with dementia of an online chair yoga intervention stated that they had better sleep, muscle strength, and flexibility with bending and cross-leg positioning after the intervention, and online intervention was a convenient way for them to establish a routine of exercise, particularly when they had to stay at home because of the pandemic.(43) An online mind-body exercise group intervention for people with cognitive impairment was shown to improve participant- reported physical function, such as movement and social connection, and cognitive function, such as mental clarity.(44) Online training is also crucial to family caregivers of people with dementia who are not able to attend in-person intervention. Systematic reviews on dementia caregiver support showed that e-learning methods could help enhance dementia care confidence and empathy and reduce caregiving stress,(22,45) while caution on adequate training to caregivers to ensure usability was mentioned.(45) Another systemic literature review of six multicomponent programs revealed that caregivers welcomed the e-learning format because it was convenient, time-saving from transportation, and could help them establish a social network.(5) A scoping review on online caregiver education also affirmed the benefits of online learning in terms of improvement in dementia knowledge and self-efficacy and reduction of caregiving burden and pointed out that the education materials should be tailored and cater for the various stages of dementia.16 The importance of relevance of information is also emphasized in another study evaluating the effects of an online caregiver self-learning platform combining dementia care lessons, written coaching from professional staff, and caregiver diary, in that the caregiver subjects thought it important that the lesson contents and examples were relevant to their caregiving experience; this study also showed that online intervention benefited caregivers of a wide age range, such as those over 70 years old.(35) Online dementia intervention and training developed by Jockey Club Centre for Positive Ageing Jockey Club Centre for Positive Ageing (JCCPA) endeavours to develop a variety of dementia-related interventions. During the pandemic, we observed the pressing need to keep our clients with dementia up with training despite the cessation of services, so we developed online cognitive training using the Zoom platform. The online cognitive training is designed to last for 1.5 hours per session, roughly equivalent to two sessions of in-person day care service. The participants with dementia would take part in a variety of cognitive, psychosocial, and physical activities coached by a trained professional and/or supporting staff. The online cognitive training is well received by our clients, and quite some of them continue attending the online cognitive training after the in-person day care service resumes; in other words, they started a hybrid mode of cognitive training. From an NGO’s point of view, online intervention increases the number of beneficiaries because the delivery of intervention would no longer be restricted by the limited space of day care centres. Therefore, more community-dwelling people with dementia could be served. Online cognitive training for people with dementia As for people with dementia who may not have attended any day care service or online intervention before, we developed a lighter version of online cognitive training to equip them with the necessary knowledge about dementia and motivate them to further use dementia services. This lighter online cognitive training lasts for two sessions, one session per week, and is delivered through Zoom; each session lasts one hour, and eight to ten pairs of people with dementia and their caregivers, predominantly adult children, participate in the intervention. The intervention includes activities such as reality orientation, reminiscence, and physical exercise, so that the participants who are new to dementia-related intervention would enjoy the cognitive training in an undemanding manner. Thanks to the generosity of a private donor, J. Shaw, the intervention is free of charge. The intervention has served close to 300 people with dementia within one year, and 85% of our participants were people with mild cognitive impairment or mild dementia. Our evaluation showed that 86% of the participants with dementia were observed to have improved mood, over 90% of them were motivated to participate in the online training, and 87% of the caregivers were willing to attend online training with their care recipients in the future. JCCPA has been conducting online dementia caregiving skill workshops since the pandemic to support the caregivers who were under increased caregiving stress due to the cessation of day care service.(30) In addition, we developed an e-learning platform for caregivers to get access to all the necessary learning materials in a convenient, one-stop manner. The platform covers topics such as recognizing signs and symptoms of dementia, handling behavioural changes, and utilizing local community resources. The contents are presented in videos with text support, also, there are interactive exercises to promote active learning, enhance knowledge uptake, and increase interest and motivation of caregivers. E-learning platform for caregivers of people with dementia JCCPA also actively participates in research on online intervention. We collaborate with Flinders University on the cultural adaptation of the iSupport online dementia psychoeducation program developed by The World Health Organization(46) and the evaluation of the effectiveness of the program in Hong Kong.(47,48) Our qualitative study findings confirmed the importance of cultural relevance and multimedia materials in online dementia education that behavioural management and relaxation are key training components and the difficulty of initiating advance care planning discussion in Chinese culture. The findings helped us to identify the training needs of caregivers of people with dementia and how the online platform can be better designed to improve training outcomes. The findings of our qualitative study will be presented in the 36th Global Conference of Alzheimer’s Disease International in April 2024. Future development In addition to the above-mentioned online intervention, virtual reality (VR) technology is used for dementia training with a focus on emotion,49 cognitive functions such as attention, executive function, orientation, instrumental activities of daily living,(50-52) and physical well-being.(53) A literature review on immersive VR intervention showed that the technology could be used for diagnosis and rehabilitation for people with dementia, and it is tolerated by the cohort.(54) However, there are inadequate high-quality studies included in the systematic reviews and the included studies are usually of small sample size, so further studies with robust research design and larger sample size should be implemented to affirm the effectiveness of VR intervention. The adverse effects of VR technology need to be carefully examined as well. A systematic review on VR intervention in subjects with mental health issues pointed out that though there are adverse effects such as cybersickness, anxiety, and dizziness, few studies reported them in their publication.(55) A study on the effects of VR intervention on improving the mood of people with dementia resulted in mixed results that the subjects had improved mood and alertness, but also experienced fear and anxiety.(56) Further studies need to be conducted to examine the level of acceptability of VR technology and suitable VR scenarios for people with dementia, while the adverse effects should be properly documented with reliable tools so that we can have a full picture of the pros and cons of the technology to people with dementia. Another research direction of VR intervention is on its usability at home. People with dementia may find VR technology more difficult to use than people without dementia and may need assistance from caregivers. Therefore, usability on the devices and digital literacy of people with dementia and their caregivers need be further explored so that the design of the device and equipment can be used at home conveniently. In addition, VR intervention may not be suitable for people with dementia who are fall risk, so the safety of the intervention contents needs to be further evaluated so as to avoid potential adverse effects. Training for people with dementia and their caregivers is crucial for their mental well-being and overall health. This article illustrated the limitations of in-person intervention for people with dementia and their caregivers and listed the evidence of the benefits of online intervention for this cohort. We developed dementia-related intervention and support delivered in an online manner so that people with dementia and their family caregivers could get timely and appropriate training and support without geographical and physical barriers. 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Facebook Twitter LinkedIn Print More About Stakeholder Jockey Club Centre for Positive Ageing Person centered care model for people with dementia, supporting public education, research, and professional training in dementia care Contributor Profile Read Profile Timothy Kwok Director Jockey Club Centre for Positive Ageing (JCCPA) Phone: +852 2636 6323 Email: info@jccpa.org.hk Website: Visit Website Facebook: Follow on Facebook Contributor Profile Read Profile Florence Ho General Manager Jockey Club Centre for Positive Ageing Phone: +85 226 366 323 Email: florence@jccpa.org.hk Website: Visit Website Contributor Profile Read Profile Bel Wong Research Manager Jockey Club Centre for Positive Ageing Phone: +85 226 366 323 Email: bel.wong@jccpa.org.hk Website: Visit Website Contributor Profile Read Profile Tobi Cheng Research Officer Jockey Club Centre for Positive Ageing Phone: +85226366323 Email: tobi.cheng@jccpa.org.hk Website: Visit Website TAGS Dementia SH - Jockey Club Centre for Positive Ageing LEAVE A REPLY Cancel reply Please enter your comment! Please enter your name here You have entered an incorrect email address! Please enter your email address here Save my name, email, and website in this browser for the next time I comment. Δ