A Legacy of Care: An Interview with H.M. Queen Silvia of Sweden on Improving the Quality of Life for Dementia Patients

"I know there is a great sadness to see the person you love fade away more and more. Therefore, greater knowledge of dementia has become a mission for me, and I hope that it will be widely recognized that this is a disease that must be shouldered by the entire society."


Founded in 1995 on the initiative of H.M. Queen Silvia of Sweden, the nonprofit foundation Stiftelsen Silviahemmet seeks to improve the quality of life for persons affected by dementia and for their families. The Silviahemmet care philosophy supports this mission through the cornerstones of person-centered care/symptom control, family support, teamwork, communication, and relationships.

Among its many programs, Silviahemmet runs a dementia day-care center at Drottningholm, next door to the royal palace; educates nurses and assistant nurses in cooperation with Sophiahemmet University College; and, in partnership with the Karolinska Institute, enrolls physicians in master’s level courses in dementia care. Following in the tradition of the nurses being known as ‘Silvia Sisters’, these first “Silvia doctors” received their titles from H.M. Queen Silvia in May 2015.

Silviahemmet also co-founded the Swedish Dementia Center, a national competence center for dementia, which focuses on spreading throughout Sweden research, knowledge, and best practices in the field. H.M. Queen Silvia is still the working chairperson of the foundation to this day, often visiting the facilities and taking part most of its graduation ceremonies and events.

With the help of Swedish Care International, AARP International was able to ask Her Majesty some key questions about Silviahemmet and the legacy she has helped achieve there.

Could Your Majesty describe the background of the foundation Stiftelsen Silviahemmet and why this was important to you?

It began with my mother; at first I had no idea that she was suffering from dementia. Our father protected her, so my siblings and I did not notice anything. She was a little forgetful but worked very well socially. It was when my father died and she was without his support that we more and more began to notice her dementia. I first saw it when she once came to visit Stockholm; something was not right. It could be simple things that she had difficulties with—for example, to organize things, to pack a bag.

At the time, this was 20 years ago—knowledge about dementia was poor. No comprehensive education in the field of dementia existed at this time. That is why the idea to found Silviahemmet and to train nursing assistants in specialized care in dementia was conceived. Today, Silviahemmet has become a center of excellence in the field of dementia care and education.

Why does Your Majesty believe education and training are so important in dementia care?

Caring for a person with dementia is not the same as caring for an intellectually healthy elderly person; it requires training and knowledge. I know that many families find this [level of care] very demanding, and I myself know from experience that one is always concerned. It requires so much of the caregivers, like care, patience, and love. And I know there is a great sadness to see the person you love fade away more and more. Therefore, greater knowledge of dementia has become a mission for me, and I hope that it will be widely recognized that this is a disease that must be shouldered by the entire society.

What achievement of Silviahemmet is Your Majesty most proud of?

I think that the general change in terms of awareness, discussion, care, and research compared with when the Silviahemmet was founded is the greatest achievement. I have seen the shift from unawareness to acknowledgement. Today in Sweden there is specialized training available to assistant nurses, nurses, and doctors. This is a result of a unique cooperation with Sophiahemmet University and the University Karolinska Institutet.

That is something I am personally very proud of. But there is also greater understanding of the complexities that affect everyone touched by dementia, including families and caregivers.

As an innovator yourself, what advice and encouragement would you give to people in the United States and around the world who would also like to improve life for their family members with dementia and others in their community?

The most important thing is to see the person, not the disease. Also to encourage families and friends to be present in the lives of those diagnosed with dementia. Above all, we need to talk more about it as an illness and how it affects both those who are ill and their family members.

A few years back, a scholarship for nursing students, for which students apply with innovative ideas for the care of elderly and dementia patients, was launched in Your Majesty’s name. What does Your Majesty find most interesting about the Queen Silvia Nursing Award and its outcomes?

The Queen Silvia Nursing Award is a way to encourage nursing students to study and learn more about dementia, to be curious, and to bring their own perspective to research that can further our knowledge of the disease. The aim is to support young, driven people with creative ideas that can question convention in how we care for the elderly and dementia patients.

When Silviahemmet was founded, some of the specialized practices were new and challenging to care institutions that were used to doing things in a certain “old fashioned” way. But sometimes new ideas and creativity are needed to make progress.

I think we have succeeded in increasing the interest in dementia care, and I am very pleased that nursing [those] patients with dementia has now a higher status.

The first Dementia Forum X, a global executive meeting to discuss the challenges of the demographic change and the development of dementia, took place in Stockholm in May 2015 under Your Majesty’s patronage. What was the most important outcome of that event?

The conference included stakeholders from across society: cabinet ministers; ambassadors; and leading actors in dementia care, geriatric care, finance, society, and politics. Everyone, from politicians to business leaders, were able to share ideas about how to engage in and take responsibility for the upcoming global challenges of an aging population and the issue of dementia. It was a wonderful experience to feel such great commitment and to listen to the lively discussions on these particular issues.

Swedish Care International works with the internationalization of Silviahemmet’s education and training, and is today present in eight countries around the world. Why does Your Majesty think it is important to share this work internationally?

From experience and travel I know that caregivers around the world are doing their utmost, but without knowledge and proper training it is very difficult to provide the best possible care. I therefore think it is important to share our experiences and best practices internationally so that others may benefit from the work of the Silviahemmet Foundation.

What does Your Majesty believe are the most important lessons that countries around the world can learn from Sweden and from the experiences that Silviahemmet has accumulated?

One of the cornerstones of Silviahemmet’s care philosophy is having the appropriate approach. This is very essential. Silvia Sisters are trained to communicate, build, and nurture relationships. It is important to get to know every single person and support them in their individual difficulties—not to rush, but to do things in a pace that works well for the person.

Your Majesty has also been involved in projects to develop high-tech solutions for the elderly and those afflicted by dementia. How will—in Your Majesty’s opinion—technology be a part of creating a dementia-friendly society?

The challenge with the growing elderly population demands new ideas and solutions, and therefore technology and creative actors in the care sector have an important role to play. Technology can be of much help to those who care for dementia patients; it can also be an inexpensive and accessible source of support and information in parts of the world where access to specific information regarding dementia is scarce. An example of this are three free-of-charge smartphone apps, Memory Box, Dementia Support and Elderly Care, that we launched together with a group of partners. These apps have been downloaded by thousands of people in over 100 countries.

For more information about Silviahemmet, go to www.silviahemmet.se/en/

For more information on Swedish Care International and its apps, go to www.sci.se

H.M. Queen Silvia of Sweden

Queen Silvia of Sweden is the spouse of King Carl XVI Gustaf and mother of the heir apparent to the throne, Crown Princess Victoria. In 2011, Silvia became the longest serving queen of Sweden. She is well known for her numerous charitable pursuits, including her commitment to helping those affected by dementia.


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