WHO iSupport: a free 23-lesson carer manual, four PDFs on one IRIS record, and one null trial

Anti-amyloid therapy owns the headlines; the daughter sitting across from you owns the actual problem. iSupport is the counterweight that already exists, already costs nothing, and already exists in Russian. It is also, as of the first trial to evaluate its effectiveness successfully, known not to move distress or depression when you simply send the link. Both halves of that sentence change what you do with it.

What is actually behind the link

The publisher is WHO in Geneva and the corporate author is WHO itself. The project was managed by Anne Margriet Pot; writing and editing were coordinated by Neerja Chowdhary, Stéfanie Fréel, Anne Margriet Pot and Katrin Seeher. Development was supported by the Alzheimer's Association in the USA and the Ministry of Health, Welfare and Sport in the Netherlands, and the content is grounded in WHO's mhGAP guidance for carers of people with dementia.

The licence repays a second reading. CC BY-NC-SA 3.0 IGO lets you copy, redistribute and adapt the manual for non-commercial purposes, provided you attribute it and license your adaptation under the same or an equivalent licence. The WHO logo may not be used. If you translate it, you must add WHO's disclaimer that the translation is not WHO's and that the English edition is the binding and authentic one. Commercial use needs separate permission.

The licence is not the whole permission story, and this is the point at which a fast reading of the front matter costs you. Page ix of the manual states that WHO owns the copyright on iSupport and asks anyone interested in adapting and implementing it to contact WHO at whodementia@who.int to request a copyright licence, and says this applies to the manual and to the online programme alike. The WHO publication page repeats the request. The Creative Commons terms grant what they grant; WHO's own instruction to adapters and implementers sits alongside them, and it is to write first.

Every lesson has the same shape: an opening statement of why it matters and what the carer will learn, then short readings, worked examples, multiple-choice questions and practice activities. The manual says plainly that it was developed as a self-help tool, primarily for family members, relatives, friends and other carers, with NGOs and health and social care workers listed as secondary audiences. A carer may work straight through or take single lessons.

Access differs by artefact, and the difference matters. The four PDFs on the IRIS record are open: no account, no form, no fee. The Russian online course is a different object. It sits at isupport.деменция.net under the title "Zabota i Ya", was adapted by the Pamyat Pokoleniy foundation for its Dementsiya.net project, states an approximate completion time of three hours, and requires registration with name, email, password and occupation, the occupation list covering both family carers and social or home-care staff. Whether that course carries all 23 lessons is not stated on its public page, and no price is stated there either; the page carries a donation link. WHO's own publication page points instead to an online version hosted on the PAHO Virtual Campus.

What the evidence lets you claim

Windle and colleagues ran the first trial to evaluate the effectiveness of iSupport successfully: a pragmatic three-centre randomised trial across England, Wales and Scotland, funded by NIHR and registered as ISRCTN17420703. Between 12 November 2021 and 31 March 2023 they randomised 352 community carers, 177 to usual care and 175 to iSupport; 263 (74.7%) completed the trial, and all 352 randomised participants were included in the intention-to-treat analysis. At six months mean distress was 20.0 (SD 8.3) with usual care and 20.6 (SD 8.6) with iSupport, an adjusted mean difference of 0.16 (95% CI -1.17 to 1.49, p = 0.29). Mean depression was 9.5 (SD 7.0) versus 9.8 (SD 6.5), a difference of -0.54 (95% CI -1.70 to 0.62, p = 0.44). No serious adverse events were linked to the trial. The authors bound their own superlative twice, and the qualifiers are load-bearing: to their knowledge this is the largest trial evaluating a self-guided online intervention in UK dementia carers, not the largest dementia carer trial in general.

Smaller studies point the same way. In India 151 carers were randomised to iSupport or an education-only e-book; 55 completed, recruitment ran at 44.67% and retention at 36.42%, and no significant differences appeared on the primary outcomes of depression and perceived burden at three months, with improvement on one secondary measure, person-centred attitude (t = 2.228). A Spanish web adaptation raised dementia knowledge (W = -3.12, p = 0.002) and did not shift self-perceived burden.

The commentary published alongside the UK trial, by Brijnath and Antoniades, reads these results as being about delivery rather than content. It notes that iSupport has been adapted and implemented across 40 countries while efficacy evidence remains scant, that engagement in the UK trial averaged four visits over six months, and that the one adaptation reporting gains – Xiao and colleagues' Chinese version, with 266 carers across Greater China and Australia – differed mainly by adding monthly peer support meetings led by a facilitator. Their message to policymakers is not to be seduced by the cost saving a purely digital solution appears to offer.

One figure in that commentary is wrong, and it is the one a reader is most likely to check against this page: it describes the trial as involving 262 carers. 262 was the completer target the power calculation demanded (350 randomised, 90% power, significance at 2.5%, 25% attrition allowed for); the trial randomised 352 and 263 completed.

For your practice

Treat the manual as a content base, not as an intervention. The trial that came out null is the trial in which nobody was in the room. If you send a family the link and nothing else, the evidence suggests you should expect what the UK trial found.

Nor is that reading a workaround of WHO's intent; it is WHO's own instruction. The user guide says: "Although iSupport is primarily a self-help tool, we encourage a broader use. For example, iSupport might be supplemented by guidance from volunteers or health care workers to create more impact. The iSupport manual can also serve as a tool to structure educational or support group meetings for carers of people with dementia." The trial tested the one mode WHO itself calls primary but explicitly not exclusive.

What you do get is a structured, free curriculum, licensed for adaptation, covering the work you were going to do anyway: a lesson on aggression, one on delusions and hallucinations, one on sleep, one on depression, anxiety and apathy, one on supported decision-making. The ShareAlike term lets you rebuild those into handouts for your own group, so long as the result stays non-commercial, carries attribution, drops the WHO logo and keeps the same licence. Read one layer further before you print at scale: WHO states that it owns the copyright on iSupport and asks anyone interested in adapting and implementing it to request a copyright licence at whodementia@who.int. Handouts you use inside your own sessions are one thing; a local adaptation you intend to circulate is exactly the case WHO asks to hear about first.

For Russian-speaking practice the workable route is the 2023 Russian PDF, for your own preparation and for families who read on a screen, with the caveat that a slide layout does not print as a booklet and its contents page carries no page numbers. Families who want a guided path can be pointed to the online course, with advance warning that it asks for registration.