On Sunday September 20th, Her Majesty Queen Silvia of Sweden debut podcast interview was released. She was interviewed by Swedish journalist Henrik Frenkel, host of the podcast named: Hjälp, jag har Alzheimer?! (Help, do I have Alzheimer’s?!)

HM Queen Silvia and Henrik touched upon subjects such as:

  • How to raise awareness of dementia disease and cognitive decline
  • HM Queen Silvia’s passion for advocacy for awareness and capacity building within diseases of cognitive decline
  • HM Queen Silvia’s internationally celebrated Silviahemmet certification for organizations that are dementia-certified
  • the Swedish Silviahemmet dementia care philosophy

Below is the transcript of this special episode, translated from Swedish to English and provided by the Queen Silvia Nursing Award.

To listen to the podcast in its original Swedish format, please visit Spotify – Drottning Silvia med Henrik Frenkel

In the transcript:

HM – Her Majesty Queen Silvia of Sweden
HF – Henrik Frenkel, the host

Podcast starts

Her Majesty Queen Silvia: I think You can answer that better than I can.

Henrik Frenkel: But I’m not the guest… 

(laughs)

HM: But that is the way it is. Any of us can get it. And if I should also get dementia or Alzheimer’s one day, I hope that these 25 years in which I have tried to change the direction will help my family and me. So, yes – to have things just a little bit better. 

45 seconds

HF: For over 25 years, Her Majesty Queen Silvia has advocated to raise awareness of Alzheimer’s disease and dementia illnesses. Now, Her Majesty has invited me to the Royal Palace in Stockholm for Her first podcast interview. It was a personal discussion in which Her Majesty spoke about her mother, Alice’s dementia illness, and what Her Majesty thinks what could happen if she should be diagnosed with Alzheimer’s. We also spoke about the pandemic. Her Majesty expresses the sadness she has seen and felt from all of those who have lost their lives and have become a statistic; and how older people are forced to be on their own to address their anxiety. In the podcast, Her Majesty touches upon her time in quarantine, not being able to meet her children and grandchildren, and how she had never felt her 70+ age so much until the past half-year. 

My name is Henrik Frenkel and I received a mild cognitive impairment diagnosis at Easter 2019. I want this podcast to be a journey of discovery into one of today’s most stigmatized illnesses. I will be meeting people who can help me better understand this illness that impacts 20,000 Swedish lives every year, that has been around for a hundred years, and that no one survives. 

02.15

HF: I am at the Royal Palace in Stockholm. In front of me is Her Majesty Queen Silvia. Welcome to my podcast!

HM: (chuckles) Welcome (to the Palace) as well! 

HF: Thank you! We are sitting here in a… well – where are we sitting exactly?

HM: That’s interesting. This is actually our dining hall. 

HF: Oh yes?

HM: This is where King Gustaf V had his office. In the corner there was a staircase going up to where he lived.

HF: And just outside of this we have…

HM: Princess Sibylla’s chambers that we have kept as it was in the past.

HF: This is where Her Majesty and His Majesty were engaged… 

HM: Yes, in the green sofa. 

HF: In the green sofa… the “click” sofa!

HM: “Click,” as you said.

(chuckles)

03.08

HM: And it still remains so!

HF: And it still remains so! (giggles) Excellent!

HF: We are socially distanced, sitting across from each other. All travel and state visits are cancelled. How has Her Majesty experienced this coronavirus time personally?

HM: It is of course natural that many of us have felt a sense of fear. You don’t know what it is. You don’t know much about this type of virus. You don’t know how long it is going to last. But there is also a great sense of personal responsibility for family, children, grandchildren – in my case as well. How should you react? What should you do? How should you handle this? And it’s obvious that with both His Majesty and I being in 70+ in age …

HF: And myself as well.

HM: Oh really? And I’ve never felt my 70+ age in my life as much as now. 

HF: Oh really? Why is that? 

04.16

HM: Because there was so much to do before. Organize things, visits, speeches, etc. I didn’t really have much time. But now we’re been in quarantine for 4-5 months at Stenhammar. We lived on our own. We had a friendly neighbor who helped us with our shopping. But otherwise, it was just the two of us. 

HF: Was Her Majesty personally worried about being impacted by COVID19?

HM: Of course. Certainly. There was worry for the family naturally and also for me; for Sweden, and how the pandemic was developing. Naturally, it was scary that many unfortunately lost their lives. I think it was… there was a lot of sadness in my heart that these lives only became a number. I thought it was so cruel that we could not  grieve with families. Churches were closed. People were alone with their pain. I thought it was very empty to see that and not be able to help.

HF: I will return to the coronavirus times shortly. But a more personal question first. For me, also being 70+, the difficulty has been with my children and grandchildren. But I met up with them this summer. What has Her Majesty done? Or has Her Majesty met them?

HM: Not at the beginning….

HF: Or has Her Majesty met the children and grandchildren?

HM: We were at Stenhammar but then after 4 months we were at Soliden. There, we could receive our children and their families, but only in smaller groups. First it was the Crown Princess with Her family, and then Prince Carl-Filip with his family. And everyone at Soliden was tested. We were socially distanced and only met outdoors in the garden. And thank goodness the weather was lovely…

HF: But what about the grandchildren? I have 4 grandchildren. They want to climb up and cuddle and hug and kiss. 

HM: That was very difficult. Of course, we could explain the situation to the older children. We played that we should only hug ourselves and wrap our arms around ourselves. With the younger children it was much more difficult. 

08.00

HF: It is very difficult…. Her Majesty has a  passion (advocating) for cognitive diseases such as Alzheimer’s and dementia, and the care of those with mild and critical dementia symptoms. Let us speak about Her Majesty’s internationally celebrated training for healthcare workers, the certification of dementia learning, Alzheimer’s stigma and how dementia illnesses have impacted families.

But first I am curious why Her Majesty wanted to participate in my podcast?

HM: Oh really! (laughs) I think, firstly, that that is a very important question. It is a question that I have tried to shine a light on for 25 years. It is a difficult question. And I thought that I wanted to ask You, how does it feel…?

HF: Me? 

HM: Yes… not to visit me, but for your situation…

HF: To receive a diagnosis?

HM: To be in the situation yourself. I was shocked when I heard about it, and then it was interesting that with such a difficult diagnosis that you managed to turn it into something positive. … something that is important. That you did not surrender to it…

09.35

HF: I am very touched.

HM: Well, it is an important effort… 

HF: … Thank you…

HM: …that You do as well. That I can really emphasize. 

HF: I thought I’d come back to the coronavirus. The elderly remain in isolation in the care facilities. Does Her Majesty have any thoughts about this? 

HM: That is a very heavy question…

HF: A heavy question…

HM: A heavy question. Because I can understand what it involves. Older people who are no longer able to receive visitors, and may not meet others, who must also carry all their anxiety themselves. And simultaneously the authorities want to protect them. So it is very difficult to express myself. I understand that this has been done with the best intentions, but people are suffering, and I don’t know if it is possible to divide people into groups between those with coronavirus or those who are elderly…

11.13

HF: But the ambition – from society’s side – was to protect the elderly. That was what we all said. Does Her Majesty think we did it successfully?

HM: And I have great respect for that. That is the objective. But it is painful. 

HF: But does Her Majesty think that we have been successful? 

HM: It depends on how you look at it. (pause) I think I will skip that question. 

HF: That is ok…. We go further to Her Majesty’s passion project – Silviahemmet. What was Her Majesty’s initial idea behind Silvia certification? 

HM: Before we get to that point, there has been over 20 years of work to get there. It started with a personal experience. I remember clearly visiting a (care) home over 25 years ago. I came into a room with doctors, nurses, and patients. Many had gone to the hairdressers, and were very beautifully dressed.  But I saw in their eyes that the (the patients) were not well. 

But there was a little lady with lively eyes. I thought I would try to talk to her so I went up and asked if I could sit beside her. She scooted over and said, “Yes, come and sit here.” We were in Södermalm. And I asked her, “Do you live in the vicinity?” And she responded, “Yes, and you? “

(chuckles) 

I noticed something was a little challenging. How should I respond? I said, “I no longer live in Södermalm but I work here.” ”Oh do you?” she replied, “Where?” And the doctors started to laugh. I said, “I work at the Palace.”

“Oh, do you? Do you meet the Crown Prince sometimes?”

(chuckles)

“Yes, it happens.”

“Oh – say hello to him. He has such lovely curls.”

(laughs)

It was the first time that I noticed that something was not quite right.

After many visits to facilities, there was an older gentleman at a weaving machine. And there was a very lovely table cloth that was made. I said it was lovely with beautiful colours. And he looked up and he said, “Oh do you think so?”  And I said, ”Yes, I honestly do.” He responded, ”Oh i hate it.”

 ”Why?” 

”I have 5 kids. And I have raised them. They are doctors and lawyers… and now i’m sitting on a weaving chair.” I understood then that you want to engage the patients who are residents, but that you need to know what they want to do. Is it a good fit that they sit by the weaving machine or do potato prints or something else. Everything came together with the wish to improve life and maybe even the home with ideas.

And then my mother was was visiting for the summer. My father had passed away, and we also noticed something had happened with her. I didn’t understand what it was at the time. My father protected her. We never really noticed that anything was wrong. I noticed that she couldn’t organize or pack her bags…

HF: Were those the first symptoms?

HM: Yes, those were the first symptoms. 

HF: What did the Her Majesty think?

HM: Those were the first questions I had so I thought that I must have some answers. There is a wonderful person called Professor Barbro Beck-Friis and I had met her. I called and asked her what it was and if I could come by. She came and spoke with my mother. A little later she asked to examine my mother a little more closely. And unfortunately she told me, my mother was living with dementia

17.12

HF: What did Her Majesty think when Her Majesty heard this?

HM: Dementia? What was that … at that time 20-25 years ago?

HF: Her Majesty didn’t know much… 

HM: I heard about it. I thought at that time it was forgetfulness, and was natural when people aged. Not that it was an illness, which I later learned from Professor Barbro Beck-Friis…

HF: May I back up a bit to when Her Majesty said that Your parents did not speak about this? What does Her Majesty think about it now… to hold onto this diagnosis in secret?

HM: I think it would have helped me to better understand the whole thing. To handle the situation in another way if I knew about it….

HF: To know about it…

HM: To know about it. I could have helped my mother in a completely different way. I most certainly made many mistakes because I didn’t know what it was. I had to take care of 17 tablets a day. I had studied chemistry, and I thought that this cannot be right..

18.42

HF: With so much medication…

HM: With so much medication of different types.  And it showed that my mother had stomach pains, headaches, or something else and she received different tablets. But no one was keeping track of them.

HF: Could Her Majesty speak with Her mother about the illness?

HM: At that time I didn´t really know what it was.  

HF: When it was confirmed?

HM: I had not done that. I had not done that.  I gave her my care, my attempts to help her, I gave her safety, and my love. But I didn’t speak openly with her about her illness. I didn’t’ want to worry her. She was alone and she wanted to return to Heidelberg… 

HF: And what does Her Majesty think of it today, with your knowledge today?

HM: It is important to speak openly. And there are different ways to speak openly. It does not have to be crystal clear about the illness itself, but to have the loved one understand why things are happening this way or another way.

HF: Then Her Majesty decided to talk about this openly about Her mother’s dementia. Why is that?

HM: Because it is important to talk about this illness and that it is an illness. At that time we didn’t know. I think also the education at university, they didn’t take much time with dementia. I spoke with Professor Beck-Friis about this. My mother stayed with us at Drottningholm. And she was with us everyday with the family and the children and His Majesty. It was not easy to tell the children about it either, why my mother would say to them, “You don’t come by to say hello,” when in fact they did so. She said the same thing five times to the King one day. and he kindly returned five times that day to say hello to her.  There were situations we didn’t understand and that she would become suddenly very scared, until we understood that it was a carpet. And I asked Professor Beck-Friis about it, until she asked what colour the carpet was. It was bluish-green. She said, “For her it is a big hole.” What should we do? Could we change the colour of the carpet? We changed it to a red-orange carpet and it was much better.

22.42

HF: Her Majesty recommends that families communicate about this. But there is a price. There is a stigma. Many who tell others that they have Alzheimer’s are then declared incapacitated of society, surroundings and maybe friends. What does Her Majesty think about that?

HM: I once visited an elderly care facility in Australia. It was very interesting. it wasn’t so big with just 5-6 people. But when I came in, there was a group of older people having a session with a psychologist. She spoke with each person calmly and slowly and helped them speak about their feelings.  They didn’t know what was going on, or how to speak about things with their children. I remember that there was an older man who said, “I am a lawyer and my whole life I was a lawyer, and my son is a lawyer. The only thing he doesn’t give me is the time to explain what it is that I feel. That I feel that I am forgetting (things), and that something is wrong. And he wants to declare me as incapacitated.” I thought it was so interesting and important to have this course for those with dementia.

HF: Why is there such stigma around especially Alzheimer’s? Cancer and other serious diseases have normalized in some way. But with Alzheimer’s you are branded in some way.

HM: Perhaps not just Alzheimer’s but dementia…

HF: Yes – dementia illnesses…

HM: Maybe.. I do not know. Maybe ask an expert perhaps? I can imagine a person might think there is something wrong in the brain. Or does someone become crazy. What is it exactly…

22.12

HF: Or that you are claimed to be an idiot…

HM: For example… there is anxiety when you do not want to tell others and do not wish to go out. Therefore it is so important that we, and others, should talk about it. 

HF: My diagnosis was changed after one year. But my first diagnosis was most likely Alzheimer’s. It took 4 weeks to tell my children.  What advice does Her Majesty have?

HM: A psychologist who can help. Who provides support and is with you to help you explain it to others.

HF: I am their father. I didn’t want them to have a different picture of me than the image they had before I tell them about the diagnosis. It is a difficult question.

HM:  You feel such despair. We have many Alzheimer’s patients that are younger and younger at Silviahemmet, and they are also parents to younger children. I spoke to one young man, who was so grateful to speak with the personnel at Silviahemmet about his father. He could connect with his father and the challenges in a new way. So it must also include the preparation of children as well.

HF: Her Majesty has said previously that if one should ever feel unsure or notice that you are forgetful or at the risk age, to book an appointment with a doctor. What does Her Majesty think about that?

HM: I think that it is important to avoid drawing out the anxiety or the problem, that perhaps.. it is better to  receive answers and the positives and the negative that come along with it. But also to handle it in another way. The desperation can change with understanding for the family members. That they can come onboard. That there is no loneliness. I think that is most important.

HF: At the same time there is no remedy or medication. Does one really want to know that one has a deadly disease?

HM: That is a very personal question.

HF: I said “one”… (chuckles) 

HM: That is a personal question based on how one wants to handle this. But for example there are 5 FINGERS: I don’t know if you anything about it. It is based on Professor Miia Kivipelto of Karolinska Institutet’s work. She says there are five fingers: first, you must exercise; secondly is to activate the mind with bridge for example; thirdly one must eat well; fourth is to avoid smoking; and fifth is to avoid alcohol. These are her 5 principal fingers as she describes it. 

Also when one is young, you can already start thinking about it, “You are what you eat. You are how you live”

HF: Is this something Her Majesty thinks about, these lifestyle factors to avoid cognitive decline?

HM: Yes, nowadays I do. When I see a fantastic dish that I think would be wonderful to eat, then I think “Should I really keep eating this or not?” And then, I don’t smoke thankfully, and not too much wine either. But then it is about the exercise. I don’t have too much time for it I have to admit, but I will improve!

(chuckles)

30.30

HM: Has Her Majesty attended some kind of dementia school?

HM: No.

HF: No…

HM: It was Barbro who helped and supported me. When my mother was with me, I received help from fantastic people who helped her. But even despite their long experience in elderly care, there could be problems nonetheless. And my mother who could be so kind was suddenly so irritated. Why?  Why was this happening? It was understood that it was because there was no knowledge about dementia. They didn’t know either what it was. They did it out of well-meaning and love, with great understanding. But no knowledge…

I asked Barbro what we could do, and she replied, “Education. Give them education. Train them up.” For example nursing assistants, and I asked why nursing assistant, and she said it was because they are closest to the patients.

HF: Normally there is a hierarchy that starts with doctors, and it goes down from there. But Her Majesty’s Silviahemmet certification begins with the nursing assistants. 

31.52

HM: There are two reasons why. Doctors –  at that time – did not know much about it, and this is not a critique, but it was like that at that time. But because I didn’t know anything either, I learned alongside the nursing assistants. What is dementia? What do you do? How do you connect with someone who has dementia? What can you expect from a person with dementia? It depends on their degree of dementia, where they are in the progression of dementia. Maybe just a little forgetful at the beginning or more than that. And then it becomes a little more difficult as time passes. So you need insight into that. That is something you must learn.

HF: This is an education that Silviahemmet has tried to introduce internationally. What is the response so far?

HM: There is a great desire to absorb this information, you could say.  It is exactly as Barbro used to say that, it is rings in the water. I think it is really lovely that there is a lot of interest, a lot of people are curious and many visitors come to learn more. We have had 600 from Japan who have come for education. From Germany, the Order of Malta have visited us. And they went a step further. Their entire Board were educated and went through the training.

We invited a manager from an American bank, and it was interesting. Suddenly one of his clients had remarkable ideas – to change his will, and make deals – big deals, that the financial advisors were getting a bit nervous about. But what should you do. Should you notify the family? Is this allowed? Should you respect the client’s wishes? So this Bank gave dementia training for thousands of their employees all over the world.

HF: Another one of Her Majesty’s passion projects is the dementia homes initiated with IKEA’s Ingvar Kamprad, SilviaBo. They have been around for three years but it is being stopped by the neighbours. What are Her Majesty’s thoughts about this?

HM: It is a shame. It makes me sad. The reason why I did this (project) was because I saw and understood that there were many who had lived together for 70 years… there was a case described in Expressen (evening paper), and everyone in Sweden cried, and Expressen cried. Everyone thought it was terrible that the woman twhoat had dementia had to suddenly leave her husband and live in another home. It was right before Christmas. It was very emotional. I thought it could be possible to live in a home, to live a little longer together. To make life easier for the caregiver to receive help. I thought I’d do that.

HF: Could it be that…. It has been empty for three years. The neighbors have stopped it. Could it be prejudice? One doesn’t want people with dementia as neighbors.

HM: I often thought about it.

HF: And…

HM:  I don’t dare ask because I am afraid that might be the case. And I think it is painful and cruel actually. Here are 6 apartments. We built it in a way so that so a couple can be together and receive support. Silviahemmet support is very close by. One can go to daily therapy and the other goes to work. And knowing that the husband or partner is doing well and being cared for, and to give them some years together…

HF: And now, they are empty

HM: And now they are empty. Not only are they empty but we must ensure that they are not destroyed. That means heat and everything else. And we built them in a way that would not be so expensive either. It was a very well-meaning project that I did with His Majesty’s support and I did it with all my heart…

HF: Have we not come further in our society, that people with dementia should be in a home but not close to us?

HM: That is something we have to change. We have to work on this.

HF: But does Her Majesty think this is the case? Is there that feeling?

HM: …. Thinking about this now and it seems like this, unfortunately.

HF: May I be a little personal?

HM: Excuse me?

HF: May I be a little personal?

HM: But we have been personal the entire time.

HF: (chuckles) Excellent! Her Majesty is also at the risk age of developing a dementia illness. And the risk increases greatly if there is a dementia illness within the family. Is Her Majesty worried?

HM: We can all get it. Yes, it is correct that my mother fell ill of dementia. But why did this happen? You can get dementia from an injury. And she had an injury. During the War, she was deeply depressed, and medication didn’t help…

HF: But Her Majesty has not really answered the question.

(chuckles)

HM: Oh, have I not?

HF: Is Her Majesty worried?

HM: We are all worried. We can all get it.

HF: What are Her Majesty’s thoughts if Her Majesty should get it? Because we are 70+ and we are in the risk zone, and it increases exponentially with every year that we live.

HM: I think You can answer that better than I can.

HF: But I’m not the guest.

(laughs)

HM: But that is the way it is. Any of us can get it. And if I should also get dementia or Alzheimer’s one day, I hope that these 25 years in which I have tried to change the direction will help my family and me. So, yes – to have things just a little bit better. 

HF: What would Her Majesty’s wish be if Her Majesty should have cognitive illness?

HM: As I said, that I should have the support of my family who understands what it is, that this can be managed “professionally” so to say. That they are by my side, and are not scared. That they include me, and I think this is important as well… That is what I wish for.

HF: Her Majesty has also said in our discussion that we must break the stigma and speak openly about this. If Her Majesty or His Majesty should receive this illness, is there someone in the family that would go out openly with this? Her Majesty and His Majesty are symbols…

42.18

HM: I’d like to answer this way. I think often of Queen Margrethe of Denmark, who went public to inform that her husband had dementia. And she is a very smart person. So I think that she felt that it was important for him, first and foremost, not to be exposed in any way. But also for others to know what happened, and why is he different, and why does he answer questions differently than expected. It was to protect him that she did this. And I think it was brave, smart and important.

HF: So the answer is that Her Majesty and His Majesty would do so as well.

HM: Yes.

HF: We must unfortunately conclude our discussions. There are always headlines in the papers about all things that Her Majesty says and writes.

HM: OK. Let’s see what it says then…

(chuckles/laughs)

HF: What would HM would like as the headline for our discussions.

HM: That was kind of you to ask. Yes – the wish I have is to see that the world can be a better place if we can help the lives of people with a dementia diagnosis, and support their caregivers. Then I wish that, naturally, Alzheimer’s research is invested in as it is with cancer. There are so many cases that are going well right now.

HF: Why is research so much less in dementia than cancer? Dementia research receives a tenth of what is given to cancer?.

HM:  It is as you said yourself earlier. You can talk about cancer, but you can’t talk about dementia. There are not enough donations or financial support, and something that unfortunately the pandemic will need to put more efforts into.

HF: This was Her Majesty’s first podcast ever, as I understand!

(laughs)

HM: I thought it was very interesting!

HF: How was it?

HM: Yes… Easy!

HF: Easy!

HM: Yes, it was personal, direct with this discussion… without commercials…

HF: Excellent!

HM: It is a good way… you feel safe. I think that was important.

HF: Now everyone will call Her Majesty requesting a podcast interview.

HM: Mmmm…

HF: We will see! Thank you, Your Majesty, and thank you everyone who has listened.

HM: Thank you very much. It was a lovely discussion.

HF: Thank you

(background talking)

HM: You can see here, this is where the staircase was… This was his office….

:::::

If you want to listen to the episode in Swedish, please – Drottning Silvia med Henrik Frenkel

For more information about the Swedish Silviahemmet’s philosophy and e-learning education – www.sci.se or contact us at academy@sci.se