Dementia is one of the most pressing health issues of our time, affecting 1 in 5 people over 80. There are currently around 50 million people living with dementia worldwide and, as life expectancy continues rising, this could increase to 152 million in 2050. Much of this increase is expected to occur in low and middle income countries, many of which are currently underequipped to deal with the challenge. This is certainly the case across the former Soviet Union, where social welfare systems are underdeveloped and older people face marginalisation and discrimination.

World Jewish Relief works extensively in Ukraine and Belarus, where many older people had their life savings wiped out by the financial crash that followed the breakup of the Soviet Union. This has forced them to live off their state pensions alone which, at an average of £50-80 a month, are barely enough to cover basic living costs.

For older people in need of care, life is even harder. State homecare provisions are minimal: at most, a couple of hours a week to help with shopping and perhaps cleaning. For those needing round-the-clock care, the only options are expensive, unregulated private care homes or poorly equipped state institutions.

Add a complex condition like dementia into the mix and the challenges multiply. There is a huge stigma attached to ageing in general and dementia in particular, meaning that people living with dementia in Ukraine and Belarus are often abandoned by relatives and ignored by the system. While those working in the care sector may be aware that some older people become forgetful, disorientated and may behave erratically, they are less likely to understand why. These symptoms are often dismissed as a normal part of ageing, a sign of poor character, or labelled as “sclerosis” of the brain.

This stigma also means that the condition is chronically underdiagnosed. Even where a diagnosis has been made, many professionals in Ukraine and Belarus see dementia as a mental health issue and, consequently, admit people into state-run neuropsychological hospitals or institutions. A visit to one of these institutions confirms how depressing they are. Residents share large wards or dormitories, sometimes with poor sanitary conditions. They are rarely accessible for people with disabilities. Staff have very little training and although they may be caring, they are so under-resourced, underpaid and overworked that they simply can’t give residents due attention. Personalised care plans are certainly out of the question.

However, change is beginning to happen. Through my role as Older People’s Programmes Officer at World Jewish Relief, I have been lucky enough to work with some outstanding individuals and organisations in both countries who are transforming dementia care.

We partner with local community welfare centres, called “Heseds”, throughout Ukraine, Belarus, Moldova and Georgia. With our support, these Heseds have been providing vital services to older people for over twenty years – ranging from homecare, to free medical check-ups, to healthy lifestyle and fitness classes and much more. However, three years ago we realised there was a crucial element missing from their services and we started training staff to increase their understanding of dementia.

At first, it was challenging to find common ground with our partners, who hoped we could provide a catch-all cure or prevention for dementia. There is no silver bullet, but with the support of other specialist organisations in the UK and USA we were able to start a conversation about how to ensure good quality of life for people living with dementia, no matter how advanced their conditions. We introduced our partners to the concepts of person-centred care, care plans and empowering language. Often, we found that homecarers and social workers were already using at least some of these methods instinctively, but that they were not supported to apply them systematically. Steps as simple as allowing homecare workers to tailor the timing of the care they delivered to their client’s natural body rhythms, or allowing people with dementia to attend group activities even if they are not able to complete the tasks at hand, proved both achievable and transformative.

As a result of this initiative, the Heseds now make adjustments to their services which allow people with dementia to participate, and their homecare workers are equipped with tools to better support clients with even the most complex needs. Moreover, they are also making great strides in shaping the dementia care systems in their countries on a local and national level.

In the Belarusian capital, Minsk, Hesed Rakhamim has developed a relationship with the Ministry for Labour and Social Protection, which regularly sends staff from its welfare centres and residential facilities to attend their information events.

As Sofia Abramova, Hesed Rakhamim’s chief social work specialist says “we have tried not to duplicate the services that the state already offers, but to look at what our clients need most and what the state centres are not offering.” This cooperation is now leading to systemic changes in the way the state caters to people with dementia: Hesed Rakhamim has worked with the government to develop a new training programme for student social workers, produce a range of training materials and is advising the regional state welfare centre in Minsk on a new day centre specifically for people with dementia.

In Kyiv, the capital of Ukraine, Hesed Bnai Azriel provides another example of how local NGOs can transform state dementia care. Following intensive lobbying, training and countless meetings, the city’s Department for Social Policy acknowledged the need for substantial change. Larisa Shklovtsova is Hesed Bnai Azriel’s main dementia specialist and says, “the main achievement is that the Department now recognises the importance of staff training and development and for reform to the social care system”. Liudmila Cherkashina, the Department’s deputy director, has expressed her desire to “learn from Hesed’s model, particularly the practice of starting from the client’s individual needs and giving them a choice of services”. From a British perspective, where social models of care have been the norm for at least two decades, the notion of allowing people to choose services may seem obvious; but in Ukraine, where care is typically provided top-down and people are removed from the decision-making process, this is an enormous step forward.

The experience has been a huge learning curve for us, too, which has shown us the importance of adapting models to the local context. The realities of limited state facilities, poor housing and low pensions made some of the models used in the UK unfeasible in Belarus and Ukraine. However, when we stripped these models down to their basic principles – that is, seeing the person, not the disease and adapting care to the needs of each individual – they turned out to be universally applicable. More generally, these two examples demonstrate that, with the right approach, even the smallest NGOs can have a reach far beyond their own clients and influence state policy – and therefore the lives of thousands of people – for the better.

This blog was first published on ILC.org as part of Dementia Awareness Week 2019.

Judith Fagelson is the Older People’s Programmes Officer at World Jewish Relief, an organisation supporting vulnerable older people within and beyond the Jewish communities of Ukraine, Belarus, Moldova and Georgia. She has a special interest in dementia and disability in Eastern Europe and holds a Master’s degree in Russian, East European and Eurasian studies.