Dementia Services in Ukraine

Jim Shannon Excerpts

Wednesday 10th January 2024 Westminster Hall

[Sir Gary Streeter (South West Devon) (Con)]

I beg to move,

That this House has considered the potential merits of UK support for dementia services in Ukraine.

It is a pleasure to serve under your chairship, Dr Huq, and it is a great pleasure to see the Minister of State, Foreign, Commonwealth and Development Office, my right hon. Friend the Member for Sutton Coldfield (Mr Mitchell), in his place. We have had many positive dealings over many years in this place.

I appreciate that the subject I am raising might be considered somewhat hybrid. When we think of Ukraine we think of military support in the war against Putin’s illegal invasion, and how proud we should all be of the UK support for that just war. When we think of dementia services, we cannot help being aware of how much farther and faster we need to travel in our own country to better help those affected by dementia, and their families, to see more research conducted into causes and likely cures, and to raise awareness and turbo-charge early diagnosis.

I hope that by the end of my remarks the Minister will agree that, on the contrary, the project being put before him is timely, is of great relevance to the people of Ukraine right now, and resonates squarely with the values and principles of the United Kingdom, in the amazing work we do all over the world, through our international development. The Minister will know that I have written twice to his Department about this proposal, but I believe it is worthy of further detailed consideration by his Department and by the House.

The objectives for the project that I am unpacking for the House today are to implement training and support programmes for health and social care professionals throughout Ukraine, to better support and assist people living with dementia, their families and communities. Why am I raising this issue? I am raising this on behalf of a skilled and dedicated team of people rooted in my local community, who feel strongly that they would like to share their expertise with people in Ukraine. That compassion and concern has led them to put together a coherent plan of action for the next three years.

That impressive team includes, but is not limited to, Ian Sherriff, the Academic Partnership Lead for Dementia at the University of Plymouth. Ian was part of the core team set up by Lord Cameron, when he was Prime Minister, to take forward the work of combating dementia in the United Kingdom under the coalition Government.

The team also includes Professor Sube Banerjee, Professor of Dementia at the University of Plymouth; Professor Rupert Jones, Professor of Health Research at Plymouth Marjon University; David Fitzgerald, a broadcaster and media consultant in Plymouth; Dr Rupert Noad, consultant neuropsychologist at Derriford Hospital, Plymouth; Katrin Seeher, department of mental health and substance use at the World Health Organisation; and Dr Tarun Dua, also from the department of mental health and substance use at the WHO.

I could also mention others around the world who are linked into this team, who see the need for a project such as this in Ukraine right now. Needless to say, I am delighted to support this project, as is a person we can describe only as a national treasure, namely Angela Rippon, who is a proud Plymouth person and fully behind this project. That is the team behind the project. I am sure the Minister can see that there is an abundance of relevant expertise running through it.

It is critical not to impose any perceived help from the outside, but to partner with appropriate people in Ukraine. The Minister will be pleased to know that there has been extensive consultation with health officials and Ministers in Ukraine, who are very keen for this project to take place. In particular, the UK team is guided at every stage by Nezabutni, a charitable foundation dedicated to supporting people with dementia and their relatives in Ukraine. Its director, Irina Shevchenko, has recently sent me a statement summarising the situation on the ground, and I quote:

“Since February 24 2022 a wholescale Russian military invasion started in Ukraine. During the first month of war more than 4 thousand houses were destroyed, 6.5 million Ukrainians left their homes. A lot of villages in Ukraine are on the edge of a humanitarian catastrophe without water, heat and electricity. The general state of people with dementia has worsened considerably. This has been caused by the constant noise of the airstrikes and necessity to hide in bomb shelters or other safe places, which is extremely difficult or impossible for people with dementia. The biggest challenges they are facing include: the evacuation of people with dementia from the most dangerous territories and finding a new place for them to live; the lack of medication and medical supplies; the difficulty for people living with dementia and their relatives to flee from their country; the lack of awareness surrounding dementia is a big problem—people don’t feel comfortable disclosing their condition to people around them, which can often make things worse; since the war started 90% of pharmacies have closed and it is essential that people with dementia continue to have access to their medication.”

I end the quote there, and that gives the Minister a feel for the situation on the ground for dementia sufferers and their families.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Member for South West Devon (Sir Gary Streeter) for obtaining this debate. I understand that one in 70 people across the world have dementia and Alzheimer’s. Alzheimer’s Disease International has stated:

“People with a so-called ‘hidden’ disability like dementia can be left behind in receiving humanitarian assistance and protection if those responding do not ‘see’ their condition.”

Does the hon. Gentleman agree it is imperative that relief workers on the ground are trained in recognising those suffering with the effects of dementia to make their transition to safety as simple as possible?

[Sir Gary Streeter]

The hon. Member makes a very strong point in support of my case that the Government could perhaps support the project we are talking about today and make a real difference to people on ground. I am conscious of time, but once I have finished my formal speech I will read some current testimonies from families of dementia sufferers in Ukraine, to further underline the reasons to bring forward this proposal.

Dementia care in Ukraine before the war lacked strategy, trained professionals, infrastructure and support for people with dementia and their carers. Russian attacks have attacked fundamental services, including power, water, hospitals and so on, so the situation for many people with dementia in Ukraine is now dire. Many older people have refused to leave their homes; meanwhile many women have left with their families, leaving a lack of carers. Specific data on the number of people living with dementia, their location and their needs is lacking. The urgent need now is to build systems and structures to support people living with dementia and their families in both urban and rural Ukraine.

There is no available capacity for dementia sufferers within the Ukrainian healthcare system and there also exists no national programme to advise or support the families and carers of those affected. Nezabutni engaged in a consultation with the Ukrainian Government on this issue in 2021. Although the need has been recognised, perhaps understandably, there has been no progress on the proposal from either the Ministry of Health or the Ministry of Social Policy in Ukraine since that consultation.

It is likely that hundreds of thousands of dementia sufferers in Ukraine are impacted by the insecurity and the bombing to a greater extent than their non-afflicted peers. They are unable to access formal medical support through Government medical services. The proposal that the team would like to put in place is a programme to be delivered in three phases. Phase 1 is to carry out groundwork in-country, which will take approximately four months. Phase 2 is to set up and pilot the work programme and is roughly one year in length. Phase 3 is the main programme delivery, which will take two years.

The project will engage with key stakeholders in Ukraine identified by the team, including clinical, academic, charity and Government expertise in health, social care and support. There will also be engagement with international partners, including the WHO, Alzheimer’s Europe, Alzheimer’s Australia and Alzheimer’s USA.

During phase 1, it is envisaged that a UK team of dementia specialists will visit Ukraine, hopefully during 2024, to meet the stakeholders; to review the existing systems and structures; to ensure that its training and support programmes are embedded in Ukrainian practice and culture; to review existing data on diagnosing dementia and care and support; to carry out rapid needs assessment on key training and support priorities; to agree the organisational structure for the programmes to come; and then to report the agreed plans for the subsequent phases.

Phase 2 envisages the setting up and piloting of work programmes. It involves establishing a national training and support co-ordination team, hosted by Nezabutni, to manage the training and support programme, to undertake the in-country needs assessment and priority setting and to agree and document key deliverables. It would also establish a dementia training and support unit, which would agree the delivery systems for the programme, including digital systems, plan a programme of training and awareness courses, and plan and pilot the roll-out in urban and rural settings.

However, the project would then move on to the all-important delivery phase, which would see dementia training and support rolled out across the country, using both digital and traditional efforts—in particular, training doctors, nurses, health workers, social services and care workers in updated dementia awareness and knowledge. It would involve the development of a range of courses for people living with dementia and their carers, alongside raising general awareness and support. Finally, there would be a period of monitoring and evaluating the training outcomes and the time, cost and quality of the training. I know the Minister is keen that anything supported by the Government should be properly evaluated, and that is very much part of our thinking.

What would this excellent work cost? The answer is very little for the likely benefits returned. It is estimated that phase 1 would cost around £150,000, which would include the work undertaken by the Ukrainian charity and its staff and the cost of the visit by three members of the UK team, who are likely to be Ian Sheriff, Professor Rupert Jones and a project manager, to carry out all the stakeholder engagement described previously. For phase 2, the estimated cost is £250,000. For phase 3, the cost would be determined during phase 2.

My simple request to the Minister today is for his Department to be willing to fund the cost of phase 1 to enable this project to get off the ground, whereupon funding applications to others will be made. Of course, we would be delighted if the Foreign, Commonwealth and Development Office would like to engage more fully with the project throughout its length. The cost would be small change compared with the sums we are spending on munitions for Ukraine, and the project would make a massive difference to many lives. It needs the sort of funding that might come from a departmental underspend, or possibly from an under-utilised budget for the mission in Kyiv or elsewhere. The Minister is looking askance at me, but he and I know that these things sometimes get discovered.

I hope the Minister will confirm that his Department is willing to discuss our proposal with members of the UK team to see whether a way forward can be found. The project embraces the best principles of active citizenship, which the Foreign Secretary might describe as “big society”—dedicated professionals having the compassion and drive to use their expertise to benefit people in a troubled part of the world who are less well off, and to put together a coherent, professional plan that will make a real difference. All they need is a little help from the Government to get things up and running.

I will conclude by reading just three of a number of testimonies sent to me by family members of those with dementia in Ukraine. They speak for themselves. Yulia, who lives in Kyiv, says:

“We live in the Solomianski district of Kyiv, which was severely affected by shelling on January 2. We reside in a nine-storey building on the top floor. Our house shook, probably due to falling debris, even though we don’t live near the building where the debris fell. At the first sounds of explosions, we went into the corridor. Mom was with us. Luckily, she doesn’t fully comprehend what’s happening and doesn’t resist when we all gather in the corridor or even in the vestibule.

But over the years of full-scale war, her condition has worsened, and aggression has emerged. She might start shouting at me that the enemies are about to come. In the last such episode, she grabbed a slipper, threatened me, and demanded that I also must shout because the enemies were coming. I don’t know how to handle such situations. During the last outburst, we called an ambulance, and she was administered a sedative.”

Olga, who is also in Kyiv, says:

“As loud as the past few days have been, we haven’t heard anything like it before. Unfortunately, or fortunately, my mom doesn’t understand what’s happening. It’s impossible to take her to a shelter because she doesn’t want to sit; she constantly walks, tries to go outside somewhere, either puts on a pile of clothes or undresses. So, alarms and explosions don’t affect her, but we are hostages because we can neither take her with us nor leave her alone.”

Finally, Natalia, who is also in Kyiv, says:

“We live in the city centre. We didn’t hear the shelling of Kyiv on December 29, 2022, but it was very loud on January 2. My mum and I woke up from the explosion. She no longer understands what’s happening around her; she doesn’t react. Initially, during the full-scale war, she responded and was afraid, but then her condition deteriorated sharply, so now my mom lives in her own world. I can’t even get her to the corridor during an alarm, to a supposedly safer place. She doesn’t want to. I used to lead her out. I tried, but she would return and lie down on her bed.

I realise that it is important for me to stay calm during the shelling. If I get nervous, my mom senses it and gets anxious too. So, during alarms, I do nothing. I stay calm with her, and pray.”