Empowering Dementia Carers With an ISupport Virtual Assistant (e-DiVA) in Asia-Pacific Regional Countries: Protocol for a Pilot Multisite Randomized Controlled Trial

Overview

Journal JMIR Res Protoc

Publisher JMIR Publications

Specialty General Medicine

Date 2021 Nov 16

PMID 34783660

Citations 5

Authors

Tuan Anh Nguyen

Kham Tran

Adrian Esterman

Bianca Brijnath

Lily Dongxia Xiao

Penelope Schofield

Sunil Bhar

Nilmini Wickramasinghe

Ronald Sinclair

Thu Ha Dang

Sarah Cullum

Yuda Turana

Ladson Hinton

Katrin Seeher

Andre Q Andrade

Maria Crotty

Susan Kurrle

Stefanie Freel

Thang Pham

Thanh Binh Nguyen

Henry Brodaty

Affiliations

Soon will be listed here.

Abstract

Background: Dementia is a global public health priority with an estimated prevalence of 150 million by 2050, nearly two-thirds of whom will live in the Asia-Pacific region. Dementia creates significant care needs for people with the disease, their families, and carers. iSupport is a self-help platform developed by the World Health Organization (WHO) to provide education, skills training, and support to dementia carers. It has been adapted in some contexts (Australia, India, the Netherlands, and Portugal). Carers using the existing adapted versions have identified the need to have a more user-friendly version that enables them to identify solutions for immediate problems quickly in real time. The iSupport virtual assistant (iSupport VA) is being developed to address this gap and will be evaluated in a randomized controlled trial (RCT).

Objective: This paper reports the protocol of a pilot RCT evaluating the iSupport VA.

Methods: Seven versions of iSupport VA will be evaluated in Australia, Indonesia, New Zealand, and Vietnam in a pilot RCT. Feasibility, acceptability, intention to use, and preliminary impact on carer-perceived stress of the iSupport VA intervention will be assessed.

Results: This study was funded by the e-ASIA Joint Research Program in November 2020. From January to July 2023, we will enroll 140 dementia carers (20 carers per iSupport VA version) for the pilot RCT. The study has been approved by the Human Research Committee, University of South Australia, Australia (203455).

Conclusions: This protocol outlines how a technologically enhanced version of the WHO iSupport program-the iSupport VA-will be evaluated. The findings from this intervention study will provide evidence on the feasibility and acceptability of the iSupport VA intervention, which will be the basis for conducting a full RCT to assess the effectiveness of the iSupport VA. The study will be an important reference for countries planning to adapt and enhance the WHO iSupport program using digital health solutions.

Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12621001452886; https://tinyurl.com/afum5tjz.

International Registered Report Identifier (irrid): PRR1-10.2196/33572.

Citing Articles

Exploring the perceptions of New Zealand Chinese dementia carers on the adapted world health organization iSupport manual: A qualitative study.

Li F, Parsons J, Xiao L, Cheung G Dementia (London). 2024; 24(1):133-149.

PMID: 39401395 PMC: 11667949. DOI: 10.1177/14713012241272893.

Adaptation, testing, and use of the "iSupport for Dementia" program in different countries: a systematic review.

Correa L, Martins Gratao A, Oliveira D, Barham E, Orlandi F, da Cruz K Dement Neuropsychol. 2024; 18:e20230097.

PMID: 39193466 PMC: 11348883. DOI: 10.1590/1980-5764-DN-2023-0097.

A national program to advance dementia research in Vietnam.

Vu H, Nguyen T, Nguyen T, Nguyen A, Tran D, Nguyen H BMC Health Serv Res. 2024; 24(1):156.

PMID: 38302993 PMC: 10832103. DOI: 10.1186/s12913-024-10608-w.

Smartphone app-based intervention for reducing stress, depression, and anxiety in caregivers of people with dementia in Vietnam: Study protocol for a pilot randomized controlled trial.

Than T, Nguyen T, Nguyen T, Vu L, Vo P, TTruong K Digit Health. 2023; 9:20552076231163786.

PMID: 36937692 PMC: 10014987. DOI: 10.1177/20552076231163786.

Adapting the World Health Organization iSupport Dementia program to the Indonesian socio-cultural context.

Turana Y, Kristian K, Suswanti I, Sani T, Handajani Y, Tran K Front Public Health. 2023; 11:1050760.

PMID: 36875360 PMC: 9978708. DOI: 10.3389/fpubh.2023.1050760.

References

Borgstrom E, Barclay S . Experience-based design, co-design and experience-based co-design in palliative and end-of-life care. BMJ Support Palliat Care. 2017; 9(1):60-66. DOI: 10.1136/bmjspcare-2016-001117. View

Coehlo D, Hooker K, Bowman S . Institutional placement of persons with dementia: what predicts occurrence and timing?. J Fam Nurs. 2007; 13(2):253-77. DOI: 10.1177/1074840707300947. View

Xiao L, McKechnie S, Jeffers L, De Bellis A, Beattie E, Low L . Stakeholders' perspectives on adapting the World Health Organization iSupport for Dementia in Australia. Dementia (London). 2020; 20(5):1536-1552. DOI: 10.1177/1471301220954675. View

Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M . Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. 2008; 337:a1655. PMC: 2769032. DOI: 10.1136/bmj.a1655. View

Egan K, Pinto-Bruno A, Bighelli I, Berg-Weger M, van Straten A, Albanese E . Online Training and Support Programs Designed to Improve Mental Health and Reduce Burden Among Caregivers of People With Dementia: A Systematic Review. J Am Med Dir Assoc. 2018; 19(3):200-206.e1. DOI: 10.1016/j.jamda.2017.10.023. View

Prince M . Care arrangements for people with dementia in developing countries. Int J Geriatr Psychiatry. 2004; 19(2):170-7. DOI: 10.1002/gps.1046. View

Livingston G, Sommerlad A, Orgeta V, Costafreda S, Huntley J, Ames D . Dementia prevention, intervention, and care. Lancet. 2017; 390(10113):2673-2734. DOI: 10.1016/S0140-6736(17)31363-6. View

Hinton L, Nguyen H, Nguyen H, Harvey D, Nichols L, Martindale-Adams J . Advancing family dementia caregiver interventions in low- and middle-income countries: A pilot cluster randomized controlled trial of Resources for Advancing Alzheimer's Caregiver Health in Vietnam (REACH VN). Alzheimers Dement (N Y). 2021; 6(1):e12063. PMC: 7825546. DOI: 10.1002/trc2.12063. View

Reisberg B, Ferris S, de Leon M, Crook T . The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry. 1982; 139(9):1136-9. DOI: 10.1176/ajp.139.9.1136. View

10.

Shanley C, Boughtwood D, Adams J, Santalucia Y, Kyriazopoulos H, Pond D . A qualitative study into the use of formal services for dementia by carers from culturally and linguistically diverse (CALD) communities. BMC Health Serv Res. 2012; 12:354. PMC: 3523018. DOI: 10.1186/1472-6963-12-354. View

11.

Kroenke K, Spitzer R, Williams J . The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001; 16(9):606-13. PMC: 1495268. DOI: 10.1046/j.1525-1497.2001.016009606.x. View

12.

Kaufer D, Cummings J, Ketchel P, Smith V, Macmillan A, Shelley T . Validation of the NPI-Q, a brief clinical form of the Neuropsychiatric Inventory. J Neuropsychiatry Clin Neurosci. 2000; 12(2):233-9. DOI: 10.1176/jnp.12.2.233. View

13.

Selwood A, Johnston K, Katona C, Lyketsos C, Livingston G . Systematic review of the effect of psychological interventions on family caregivers of people with dementia. J Affect Disord. 2006; 101(1-3):75-89. DOI: 10.1016/j.jad.2006.10.025. View

14.

Nguyen T, Nguyen H, Pham T, Nguyen T, Hinton L . A cluster randomized controlled trial to test the feasibility and preliminary effectiveness of a family dementia caregiver intervention in Vietnam: The REACH VN study protocol. Medicine (Baltimore). 2018; 97(42):e12553. PMC: 6211867. DOI: 10.1097/MD.0000000000012553. View

15.

Baruah U, Varghese M, Loganathan S, Mehta K, Gallagher-Thompson D, Zandi D . Feasibility and preliminary effectiveness of an online training and support program for caregivers of people with dementia in India: a randomized controlled trial. Int J Geriatr Psychiatry. 2021; 36(4):606-617. DOI: 10.1002/gps.5502. View

16.

Mahoney R, Regan C, Katona C, Livingston G . Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. Am J Geriatr Psychiatry. 2005; 13(9):795-801. DOI: 10.1176/appi.ajgp.13.9.795. View

17.

Galvin J, Roe C, Powlishta K, Coats M, Muich S, Grant E . The AD8: a brief informant interview to detect dementia. Neurology. 2005; 65(4):559-64. DOI: 10.1212/01.wnl.0000172958.95282.2a. View

18.

Nguyen T, Pham T, Dang T, Hinton W, Nguyen A, Pham T . Towards the development of Vietnam's national dementia plan-the first step of action. Australas J Ageing. 2019; 39(2):137-141. PMC: 7280075. DOI: 10.1111/ajag.12755. View

19.

Cohen S, Kamarck T, Mermelstein R . A global measure of perceived stress. J Health Soc Behav. 1983; 24(4):385-96. View

20.

Wimo A, Guerchet M, Ali G, Wu Y, Prina A, Winblad B . The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement. 2016; 13(1):1-7. PMC: 5232417. DOI: 10.1016/j.jalz.2016.07.150. View