Guest Blog – Sharing dementia knowledge and support with other countries

Freshly returned from our second yearly visit to Colombia for our ESRC project into the impact of stressful life events on the mental health and well-being of older Colombians, my mind is full of thoughts and ideas and also frustrations and sadness as to how little (if any) support family carers, people with dementia, and older adults receive in Colombia.

During our second visit, we held a 2-hour public consultation event at Club de Vida Sol de Oriente support group in the deprived San Martin neighbourhood (barrio) in the hills of Medellin. This is one of the most deprived neighbourhoods in the city, and we weren’t allowed to walk on our own, getting a University car to the front door and back. Led by our Colombian collaborator, Prof Maria Isabel Zuluaga from the Universidad de Antioquia, our team talked to the leader of the older adult support group – Libia Ruth Gomez – and many regular attendees. The group is over 250 people strong, which is a rarity in Medellin (and Colombia at large), as there is little available support and activities for people aged 60+. That’s why what Libia has set up and continues to run is impressive, especially given the lack of Government support. All the local Government does is allow them to host group meetings and activities (i.e. dance classes, intergenerational activities, cooking) in a building. No electricity, no water, no basic food, no basic educational support covered. They have to rely on charitable donations to make ends meet, if they come. It’s certainly an unreliable and insecure undertaking providing such a community group, although much needed.

Naturally, the meeting was held in Spanish, and despite picking up very little bits of the language, we were helpfully supported by one of our team members to provide translations and for us to ask questions.

Diffusion theory concerns with the spread of an innovation through a population. Researchers in diffusion theory have developed analytical models for explaining and forecasting the dynamics of diffusion of an innovation (an idea, practice, or object perceived as new by an individual) in a socio-technical system.

Considering how important public involvement is in our research in the UK (and anywhere), it was very good, as well as depressing, to hear from the older women, and one man, about their needs. With little access to suitable care and support, especially for residents of the very deprived neighbourhoods, accessing such a group has helped attendees to support their mental well-being a great deal.

However, older adults are facing severe issues in receiving support for someone with dementia. They lacked the educational resources, basic knowledge about how to provide best care for someone with dementia, what to expect, what to plan for, and how to receive support for their own needs. Unfortunately, this rings so much truth in high-income countries as well, as far too often carers in our research or as lived experts as team members share the gruelling stories of lack of support after a diagnosis, and being left to cope alone (as the Alzheimer’s Society’s report put it well also).

So what can we do? Because we need to do something. Whilst leaving the meeting both deflated and sad, it also gave me renewed and much more contextualised motivation to try and do something about this, with our Colombian colleagues. What it made me realise was that whilst the situation in high-income countries can be strikingly similar (in some regards, not all of course!), one thing that is much more advanced and readily available over in the UK for example are Third Sector organisations (Together in Dementia Everyday, Alzheimer’s Society, Dementia UK). These provide valuable support and resources where the Government’s social care system falls short. A social care system is basically non-existent in Colombia, so maybe one way to address at least the educational shortcomings into dementia care might be setting up Third Sector organisations, in collaboration with Alzheimer’s Disease International and other existing ones, and take learnings over to Colombia.

Obviously, this is not a Colombia-specific issue. This is the case in many low- and middle-income countries (LMICs). Considering that the majority of the estimated 55 million people with dementia worldwide live in LMICs, and the available knowledge in other countries, we need to get much better at supporting countries, regional Governments, and individual local groups in sharing dementia resources and knowledge. Maybe then we can also reduce the surrounding stigma, and make national Governments aware that they need to invest, finally, in care and support for those with dementia, and their families.

For us, as a next step, this means working with our Colombian collaborators closely to not only conduct our research, but to also try and embed some of the learnings in practice right away. Stay tuned, as there is lots more to come!

Dr Clarissa Giebel

Author

Dr Clarissa Giebel is a Senior Research Fellow at the University of Liverpool and NIHR ARC North West Coast. Clarissa has been working in dementia care research for over 10 years focusing her research on helping people with dementia to live at home independently and well for longer, addressing inequalities that people with dementia and carers can face. Outside of her day work, Clarissa has also organised a local dementia network – the Liverpool Dementia & Ageing Research Forum, and has recently started her own podcast called the Ageing Scientist.

Follow @ClarissaGiebel