Hello Catherine Emödi Berglund!
How does it feel to be awarded the Queen Silvia Nursing Award 2024, nursing category Please tell us about your first thoughts and feelings when you received the news.
My first thought was "Crazy!" I was so honored, proud but also so grateful and happy that now I have the chance to spread the knowledge about Lewy Body disease and relatives of people with this diagnosis.
Can you tell us a bit about yourself?
My name is Catherine Emödi Berglund and I am 64 years old. I am married to Robert from Kalix, I have a father from Hungary and a mother from Sweden and grew up in Switzerland. So you understand where the breadth of my thinking comes from. We have 2 adult children Nicolas and Linnea and 1 granddaughter Lilly who will soon become a big sister.
How long have you worked as a nurse and in which areas?
I came to Sweden as a newly qualified nurse in 1985. Started work at Orthopedic, then became a Gynecologist for a few years before I had children. In 1995 I started in elderly care in Danderyd. In 1997, I realized that we were not only bringing the person with dementia into the facility, but a whole love story. Started my first family group under the auspices of the Red Cross in collaboration with the municipality. In 2006, I was asked if I did not want to substitute for the then relative consultant. As you can see, it was my dream and I accepted. One thing led to another. In 2014, I was offered to train as a Silvia nurse, another goal in my life.
What inspired you to work with relatives of people living with Lewy Body Disease?
After a lecture on Lewy Body disease, I realized that I needed to divide my groups and offer these relatives a group of their own. The symptoms of their relatives did not match those of the others in the groups.
How do you see that support groups can make a difference for relatives of people with this diagnosis?
It is important to be able to feel that you are not alone in your situation and that only happens when you recognize yourself in the experiences of others. This group of relatives is incredibly knowledgeable about the loved one's medication, and there will be completely different discussions than in normal groups. In our case, we also have the privilege of having a close contact with Professor Londos, who we can send questions to, which is very special, and who meets the groups digitally 2 times per semester.
What are the biggest challenges that relatives face when a family member is affected by Lewy Body Disease?
I would probably say that it is ignorance that prevails with most people and misdiagnosis. It feels like relatives have to fight much more for both the right diagnosis, the right medication and understanding within both the region and the municipality for how this disease manifests itself.
Can you tell us about a particularly memorable moment that confirmed the importance of your work?
Each time we hold these groups, I get some kind of confirmation that having diagnosis-specific groups is the right decision. Lewy Body disease is so unique and cannot be compared to other cognitive illnesses. But in the groups, they understand each other and nod as someone shares about their loved one. These moments are truly invaluable.
How do you see the development of support and understanding for relatives in recent years?
Since 1997, family support has developed enormously, but there is still a long way to go. Today, you finally see that children can be relatives. Relatives are more visible in society. We who work with relative support are constantly trying to find new ways to reach out, and networking is only becoming more and more important.
What are your future visions for support to family groups in this area?
Now the groups are only in Stockholm. First of all, together with a colleague (whom I have found through a network with NKA), I want to start a digital support group for relatives in the rest of the country. At the same time, I want to offer to help with the start-up of these groups in the country's municipalities.
What are your expectations for the year as a QSNA winner?
I will be a proud ambassador and winner. Being able to spread information about Lewy Body disease and involved relatives through this award will strengthen my belief that it was once the right decision to start the groups. My motto in life is to always learn something new! And in my case, I would like to find a way to spread my knowledge and inspire others to do the same. Really looking forward to meeting many exciting people and seeing what doors are opened for me and for these relatives.
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