Providing effective dementia care in Low and Middle-Income countries: five lessons for the sector

As the global population ages, dementia care is becoming a pressing issue, and this is felt most acutely in Low and Middle-Income countries (LMICs) where healthcare infrastructure struggles with the growing demand.

Over the past decade, World Jewish Relief has worked extensively with its local partners in eastern Europe, providing support to older people facing this challenging disease in poorly equipped environments, through COVID-19 and the full-scale war in Ukraine.

Our work in this area was recently evaluated externally by Key Impact, revealing important insights into successful interventions – and highlighting what still needs to be improved – when it comes to delivering effective dementia care in LMICs.

Here are five lessons from our experience:

1. Training and capacity building is key

One of the biggest barriers to effective dementia care in LMICs is the lack of training among healthcare professionals and carers. In Ukraine, where the medical sector is stretched to breaking point, exacerbated by the 2022 Russian invasion, dementia is under-diagnosed and misunderstood.

To address this, we ran training seminars and exchange visits between 2016 and 2018 across Ukraine, Moldova, and Belarus, reaching hundreds of people, including social care professionals, homecare workers, and family carers. These seminars focused on dementia causes, symptoms, and communication strategies, with an emphasis on person-centred care.

Most importantly, our local partner staff were given the skills and confidence to train others. This effectively transferred the knowledge and power to individuals to drive change in their communities.

Our external evaluation showed that 85% of trained staff reported significant increases in their understanding of dementia.

2. Support for informal carers is critical

In LMICs, the burden of care often falls on family members, mainly women, and many of whom have little to no knowledge of dementia. This causes increased stress and burnout, and feelings of embarrassment or shame.

Providing accessible information on the condition and its expected symptoms is key, alongside a safe and open space to share what they are going through. By creating day care options and social events, which people can attend with their loved ones and get support, many carers got the chance for respite and emotional relief.  

According to our evaluation, 88% of family carers reported having someone to turn to for support, with many expressing relief at being able to share their challenges.

3. Collaboration is essential

Dementia is not just a medical issue – it’s a social one which affects all aspects of life. To address this, our work didn’t stop at training medical professionals. We also reached out to State institutions, universities, and community groups to share knowledge on dementia care.

In Belarus, for example, our local partner became a national leader in dementia care, collaborating with the Ministry of Labour and Social Care to establish dementia-friendly day centres and train social workers. This model of collaboration proved highly effective, and despite challenging political contexts, we saw real progress in public attitudes and institutional practices.

It is critical to work alongside other organisations and governments to enact real change. We are now supporting Nezabutni, a national dementia charity in Ukraine, to push their government to create a National Dementia Plan to improve dementia care at a state level.

4. Stigma is deeply ingrained

A recent survey by Alzheimer’s Disease International found that 34.2% of people in Ukraine would make an effort to hide their dementia diagnosis, the highest rate amongst all countries surveyed. This speaks to deep-rooted stigma, which prevents people from seeking help and causes feelings of shame and isolation.

Furthermore, our evaluation showed that older people themselves are the most prejudiced towards the condition. Much of this sentiment in Ukraine, Moldova, and Belarus relates to Soviet-era stigmas around dementia conflated with mental illness, which led to people with dementia being excluded from society.

Our Dementia Care programmes have made significant strides, but this is only the beginning and there is still much to be done. Targeted advocacy by people with dementia themselves, has been transformative in other countries for helping to tackle stigma, and we are hopeful to support a similar initiative in Ukraine.

Our external evaluation showed that 90% of staff reported becoming more empathetic towards people with dementia due to awareness-raising activities.

5. Language is important

From the start of the project, we placed a big emphasis on the use of positive language when referring to dementia (and older people in general).

We encouraged partners in training sessions to talk about people ‘living with’ dementia rather than ‘demented, suffering from, senile…’, and we ensured this was correctly captured when translating from English into other languages, creating terms if they did not exist. Our local partners now correct their colleagues when they revert back to previously used terminology.

Looking forward

While our work in eastern Europe has seen significant progress, the lessons we’ve learned are applicable to the broader sector. Dementia care in LMICs requires sustained investment in training, awareness-raising, and support systems for carers. But perhaps most importantly, it requires a shift in societal attitudes. Dementia should not be seen as a condition to be hidden away, but as one that can be managed with dignity and compassion. Of course, adequate funding from both Governments and the NGO sector is also key to long-term, sustainable improvements.

At World Jewish Relief, we are committed to continuing this work, standing shoulder to shoulder with older people and their carers across eastern Europe, including Ukraine where the needs are especially vast. As the demand for dementia care grows globally, we hope the lessons we have learned alongside our incredible partners can provide valuable insight to the sector.