October 8, 2024

By Beth Saffer, Head of Older Peoples Programmes, World Jewish Relief

World Jewish Relief first started looking into the issue of dementia in Ukraine and our other Eastern European countries of operation (Moldova, Belarus and Georgia) back in 2015. The world, of course, was different then. Pre-Covid, pre-war in Ukraine. Yet all was far from ideal. We had been working with partner organisations closely for many years supporting healthcare, home repairs, social care and homecare for older, vulnerable Jewish people. And yet somehow the question of dementia – or specifically, what was happening when people start showing signs of dementia and it progressed, was rather muted.

We initiated a scoping visit to Ukraine in 2015 with a dementia expert from the UK social sector to try to suss out what was happening in local community services for older people. We visited State-run psychiatric institutions, hospitals, where people with advanced dementia were living out their final years, hidden from view.

On the whole, we found social and medical sectors woefully underprepared to cope. Awareness in wider society was low, and attitudes to dementia were fairly negative. People were unaware as to what was causing their loved ones strange behaviour and so kept them hidden away, withdrawing from social life. Diagnosis rates (officially) remain extremely low in this part of the world, as medical professionals are overwhelmed and undereducated on dementia from a clinical perspective. Soviet-era stigmatisation of anything considered to be linked to mental health, remained strong. And yet, there were pockets of good practice in our community with individual staff members, especially homecare workers, having intuitively developed a wealth of experience in caring for their clients despite a lack of clinical understanding of the disease.

We set about a basic training plan which was to involve as many social care professionals, volunteers and lay-people, in a 2 or 3 day seminar covering things such as causes of dementia, debunking myths, communicating with people who have dementia, types of dementia, and much more. It also set out a framework for providing ‘person-centred care’ which puts the individual at the heart of everything and encourages carers to get to know their life story/what they enjoy, in order to care for them and maintain their skills for longer.

This took place intensively between 2016 and 2018 and we ran 8 training seminars in total across Ukraine, Moldova and Belarus, reaching hundreds of people. We brought colleagues to the UK for exchange visits to see Jewish Care and other services for people with dementia. We started funding specific dementia activities within our projects – assigning a dementia coordinator, setting up day centres, support for family carers and much more. Our incredible colleagues took the initiative to go far and wide, reaching out to State-run care institutions, medical universities, and other community groups to tell them about dementia.

Long-term impact

Fast forward 8 years and we have been through Covid, and 2.5 years of full-scale war in Ukraine. Of course, both these factors have significantly impacted our work in every way. Last year we decided to invest in a professional evaluation of the impact and learnings from this programme and worked with Key Impact, an Israeli-based consultancy firm specialising in social development research. The results were overwhelmingly positive, with 85% of staff who participated in the programme reported a significant increase in their knowledge of dementia and 88% of family caregivers reported having someone they could turn to for support thanks to the programme. 90% of staff surveyed reported becoming more empathetic towards people with dementia due to awareness-raising activities.

People with dementia had access to services better tailored to their needs – and crucially, were not excluded from community life: “He very much liked attending the group meetings at the Hesed[1] day centre. I mean, the meetings somehow uplifted his spirit. And of course, his good mood always had a positive effect on everything else: his communication, thoughts and memory.”

Family carers felt reduced stress and felt they had someone to turn to: “Thanks to homecare services, I now have some time for myself. I don’t have to constantly sit with my relative. I know that the homecare worker will come and take good care of her, which makes everyone happy.” Another said: “Suddenly my mother took a photograph and started eating it. It was shocking… but over at the Hesed, they explained why and how I shouldn’t get cross with her.”

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’ etc and ensured this was correctly captured when translating from English into Russian (which was the common language for our partners at the time – nowadays, understandably, Ukrainian is used for any work in Ukraine). This involved creating some terms that were not commonly used in Russian. Our local partners now correct their colleagues when they revert back to previously used terminology.

Wider societal change

Despite challenges, in all locations where we fund programmes, staff have made efforts to share their knowledge and expertise through collaboration with other social care providers or professionals.

Interestingly, our partner in Belarus had the most success in the early years of the programme engaging with other NGOs and State actors, consequently becoming known as a leader in dementia care across the country. Staff members established important connections with representatives of the Ministry of Labour and Social Care and the territorial centres. In 2018, they held a series of training courses for territorial centre representatives, in order to contribute to the establishment of dementia-friendly day centres across Belarus. They also published a guidebook on dementia care, then distributed it among various professional bodies. The Belarusian Ministry of Labour and Social Care in turn issued its own recommendations to social workers with state facilities. This was a significant achievement considering the context in Belarus. In Moldova, turbulent political times prevented much real engagement with Government and dementia is still not considered a public health priority.

Of course, there is still a lot to work to do. Lack of resourcing for dementia is a problem world-wide and restricts research, timely diagnosis and adequate care. More training is needed for new staff, particularly in Ukraine where mass emigration due to the war has led to high staff turnover. And our evaluation found older people remain highly stigmatised towards themselves and their peers and lack basic awareness of dementia.

Just recently, Alzheimer’s Disease International published its annual report “Global Changes in Attitudes to Dementia”[2] and Ukraine featured in this study for the first time.  In response to the question “I would make an effort to keep my dementia a secret when meeting people: agree or strongly agree”, 34.2% agreed, the highest rating of all the participating countries, showing a high level of stigma remains.

The war has sadly compounded an already challenging environment for people living with dementia and their families. Our partner Nezabutni wrote in the Alzheimer’s report:

“In the past two-and-a-half years, we have seen volunteer drivers sometimes refuse to help people with dementia evacuate from Russian-occupied territories because they were behaving “abnormally”; people with dementia facing complaints and incomprehension from others taking refuge in shelters during air raids; refugees and internally displaced people struggling to find housing and being asked to leave after being told they “do not behave properly.” Other people living with dementia have also been abandoned by their own relatives because they didn’t know how to safely flee with them or how to arrange suitable accommodations elsewhere.”

There is clearly still a huge way to go. We plan to continue our work raising awareness, building understanding of ‘dementia risk reduction’ and promoting person-centred approaches, led as always by our incredibly resilient and dynamic partner organisations. Together, we will continue standing shoulder to shoulder with older people across Eastern Europe, helping them to age with dignity.

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[1] N.B. Heseds are Jewish social welfare organisations that exist across the Former Soviet Union, which were set up principally to distribute services to Survivors of Nazi repression from the Claims Conference.

[2] Alzheimer’s Disease International, World Alzheimer Report 2024, World-Alzheimer-Report-2024.pdf (alzint.org)