Alzheimer’s Association – Bulgaria
Alzheimer’s Association – Bulgaria
Irina Ilieva is the founder of the Alzheimer Bulgaria Association. She committed herself to this mission to serve the community 20 years ago. Today she speaks to us about the working group she formed for people with early dementia, and Selegiline is her partner in this challenging task, supporting the Association’s activities in this area.
Alzheimer’s Association – Bulgaria
Alzheimer’s Association – Bulgaria
Tell us how the idea for the working group for people with early dementia came about.
Alzheimer’s dementia Bulgaria
The civic association “Alzheimer Bulgaria” is an organisation for families who are in some way affected by dementia. Our main aim is to change the policies and regulations in the country related to this disease. Our members have an urgent need for social support, which, unfortunately, is neither organised nor formalised, and is not provided by anyone in Bulgaria – it is not a focus of either health or social policy. With this approach to people with dementia, we are light years away from the practices in European countries and from the recommendations of European documents and the World Health Organisation.
The idea for the group for people with early-stage dementia came from a member of the organisation. Irene found us after her husband was diagnosed. She said that his friends had abandoned him, he wasn’t seeing anyone and was feeling very isolated and lonely. Couldn’t we do something? We had already met Ivan, who didn’t hesitate to talk about his diagnosis. And we decided we could introduce them to each other. Why not work with a professional?
It wasn’t difficult to form the group, as several people joined straight away. The problem was finding a professional to work with them. There is no trained staff. No one trains professionals to work with people with dementia.
Alzheimer’s dementia Bulgaria
Does the group have a name? If so, how did you come up with it?
The group has a name – Friends in Remembrance.The name was chosen by the group members themselves, following debate and a vote. There were several suggestions. We all thought about this name together: the group members, the psychotherapists and the organisation’s team. The final decision, of course, was up to the group members, who devoted an entire session to choosing a name from among the various suggestions. We are now working on our symbol, our logo.
Alzheimer’s dementia Bulgaria
Was there a lot of interest when you announced the initiative?
Alzheimer’s dementia Bulgaria
Yes, there are still places available. Unfortunately, we can’t accept everyone who wants to join, but we’re already working on organising a second group, which we plan to start in the coming months.
The problem is that some people who aren’t suitable for the group come because they already have advanced dementia, and we can’t offer them an alternative because there isn’t one. Don’t ask me how I conduct conversations with them.
There is no day centre for people with dementia in Sofia, and we have been talking about it since 2014. The health and social systems need to take measures in this regard.
Alzheimer’s dementia Bulgaria
What challenges do you face in your work with the Group?
Alzheimer’s dementia Bulgaria
I can speak about the challenges we faced before we started the group. There was a shortage of trained staff – psychologists and social workers who could work with people in the early stages of dementia. If we assume that this is a social service – and it is, since our people are aged 65 and over and have health problems – there is no established standard for its provision.
For the psychologists and psychotherapists who are part of the organisation, this is a real challenge, and I thank them for their courage and dedication to this mission. We constantly monitor European practices and adapt and apply them in Bulgaria. We are in constant contact and share our experiences.
Alzheimer’s dementia Bulgaria
Who is monitoring the progress and impact of working with people? What are the next steps?
Alzheimer’s dementia Bulgaria
First, we need to clarify what we mean by “effect.” For us, it’s important that people feel accepted and have social contacts. This isn’t a school where we’re tested and expected to produce results. This is a club where people can have fun and live a fulfilling life. They can do things together and enjoy it. For me, smiling faces are the greatest achievement.
We have volunteers who have studied neuroscience or are pursuing a PhD in neuroscience at European universities. They also help to measure the quality of life of our people using certain methods and techniques.
Alzheimer’s dementia Bulgaria
Finally: how would you finish the sentence “Do you remember ………….?”
Alzheimer’s dementia Bulgaria
Do you remember the last time you saw your friends?
