Online opportunities: Using technology to connect unpaid carers 

Eley, R. (2025) ‘Online opportunities: Using technology to connect unpaid carers’, Journal of Dementia Care, 33(6) pp. 27-29

Together in Dementia Everyday (tide) is an organisation for current and former unpaid carers of people with dementia. Ruth Eley discusses the online connections that tide provides. 

Before Covid, tide had little experience of using online platforms other than for internal communications and occasional video-conferencing with external partners to reduce travel time and costs. All its professional training and its work with carers were done in person, including the Tide Advisory Group (TAG) comprising current and former carers who provide feedback on priorities and suggest future direction. Covid changed all that; it forced tide to switch everything to online delivery, like so many other organisations. It led to tide introducing additional groups, such as its virtual coffee morning. Attendance at these groups was high, with carers describing them as a lifeline. Five years on, despite reduced finances and a tiny staff team, tide has continued and developed its online offer.

Carers Development Programme

This online programme offers workshops on topics that carers tell us are important to them, from looking after their own health and wellbeing to practical tips and techniques in caring and making sure their voices are heard. Carers’ stories are always included, either by pre-recorded video or in-person on the day. The workshops are delivered on a rolling programme, usually 4-6 each month and require pre-registration via Zoom; this makes follow up by e-mail (sending support material and requesting feedback) straightforward. Tide also offers monthly online peer support involvement groups for particular interests such as Young Onset Dementia, Former Carers, Research Carers and Male Carers, as well as a fortnightly Carers Coffee Morning – all facilitated by former carers.

Feedback from the sessions confirms that people value the content, the style of presentation and the opportunity to share emotions and experiences in a safe space. Participants particularly appreciate hearing carers’ stories directly, with a far greater and more immediate impact than via a proxy trainer or facilitator.

What have we learned?

Online or in-person?

There is no doubt that events held in person have their merits: chatting over coffee before the start and during breaks; getting a good ‘feel’ for the mood of the participants and how well the session is developing; and immediate feedback on the content, presentation and impact of a workshop (don’t let people go until they’ve handed in their feedback form!). Those attending our in-person peer support groups for people with young onset dementia and their carers tell us they got ‘fed up’ with having to meet online all the time and politely but firmly rejected tide’s offer of alternative online opportunities. As a facilitator and trainer, I enjoy meeting people in the ‘real’ room where it is easier to judge responses, note body language and respond appropriately.

However, unpaid carers are busy people. Getting organised to arrange substitute care if required, travel to the venue, allowing travel time to and from an event, and worrying whether the person they have left behind is OK, may make in-person events unrealistic for many. Attending an online workshop or peer support group, with definite start and finish times and no travel time, makes participation much more straightforward and less stressful. Carers may not need to arrange substitute care if they know they can leave briefly to attend to the person they support who is in the next room. Some people with dementia sit in the background or even next to the carer during groups or workshops. This has never caused disruption or distraction to the session as a whole, as the carer can turn off microphone and camera if needed. If the person with dementia does become agitated or distressed, it is far easier for the carer to respond there and then, rather than have to dash home from a venue some miles away.

We limit workshops to one and a half hours as experience suggests (and feedback confirms) that these are the maximum length for participants to be able to concentrate and absorb information.

Connecting carers matters

One of the well-documented consequences of becoming an unpaid carer is that of isolation (see for example Alzheimer’s Research UK, 2015; Alzheimer’s Society, 2020). Friends and family may drift away after a diagnosis, because of stigma or because they simply don’t know how to respond to someone with dementia or how to help. Time for social contact, keeping up hobbies or interests or attending to your own needs such as going to the hairdressers or the gym may be squeezed out entirely. Carers can become entirely subsumed by their caring role, losing their sense of identity, and feeling that they are on their own. Post-diagnostic support is patchy, depending very much on where you live, so many people with dementia and carers are left on their own after diagnosis to cope, without information or a ready source of support and advice (Alzheimer’s Society, 2022). Tide connects carers through its on-line network; subscribers receive a monthly newsletter detailing tide’s events, activities and news from the wider dementia world. Its online peer support focus groups are UK-wide; a recent Young Onset Carers group included carers from Scotland, Wales, Northern Ireland and the Republic of Ireland as well as different locations in England. The TAG brings together carers from the four UK nations each month without the costs of transport and overnight accommodation. The benefits are significant:

• Carers meet others from the whole of the UK (and beyond), enabling experiences in the different jurisdictions to be compared and contrasted and ensuring that our focus remains UK-wide and not England or London-centric;
• Carers value being in a safe space, without the need to explain or justify their emotions;
• Carers can share examples of positive service responses which can motivate those receiving inadequate care to advocate for improvements in their area by citing good practice;
• Carers share practical tips and techniques – what works for them – as well as information about useful resources and apps, in response to whatever their peers may raise in the groups;
• Friendships have formed which would not otherwise have been possible – one carer from Glasgow has visited others in North Wales on several occasions;
• Carers value the follow up emails with summaries of discussion points and useful resources – these keep them connected, even if they can’t attend particular group meetings.

Keeping current

Tide prides itself on co-production. Topics generated through discussions in our on-line groups are explored further and where appropriate developed into new products, adding to our Carers Development Programme or to our other on-line resources. A recent example is ‘Making Shared Care a Reality’ (Together in Dementia Everyday, 2025). Carers in the Coffee Morning raised concerns about their varied experiences of trying to stay involved in the care of their relative once they had gone into a care home. Further discussions at the TAG confirmed that this was an important and relevant topic. A group of interested carers formed a working group to develop a questionnaire and assist in its dissemination. The subsequent report was launched at a webinar and the working group is co-producing a staff training package, with seven care homes taking part in a pilot, and a new module for the Carers Development Programme. Tide is also developing awareness-raising training for health and social care staff about young onset dementia. This arose from concerns expressed in the Young Onset Carers group that professionals they encounter frequently have little knowledge or understanding about the different presentation of dementia in younger people and its impact on family life.

Conclusion

Going virtual in 2020 was a necessity, not a choice, but this has enabled us to continue our investment in unpaid carers by listening to their concerns, encouraging ideas, co-producing new resources and helping them find and use their voices to influence change.

As one carer told us, “Attending these sessions has given me perspective and hope that there will be a way forward. There is always support available in one form or another. As a carer, we face our own unique challenges but by sharing experiences we can support each other and know that we are not alone.”

Links

References

Alzheimer’s Research UK (2015) Dementia in the family: the impact on carers. Dementia-in-the-Family-The-impact-on-carers1.pdf accessed 06 October 2025

Alzheimer’s Society (2020) The Fog of Support: an enquiry into the provision of respite care and carers assessments for people affected by dementia. Alzheimer’s Society as_new_the-fog-of-support_carers-report_final-compressed.pdf accessed 06 October 2025

Alzheimer’s Society (2022) Left to cope alone: the unmet support needs after a dementia diagnosis Alzheimer’s Society Left to Cope Alone: The unmet support needs after a dementia diagnosis | Alzheimer’s Society accessed 06 October 2025 Together in Dementia Everyday (2025) Making Shared Care a Reality TIDE – Together In Dementia Everyday – Making Shared Care a Reality – Report Overview accessed 06 October 2025