With a Heart for Dementia Care – Anna Swall on the Power of Knowledge and the Challenges Ahead

Interest in specialising in dementia care is growing—a development that reflects the increasing needs of our ageing society. We spoke with Anna Swall, Associate Professor in Nursing at Dalarna University, about the importance of education, the unique role of the specialist nurse, and the challenges facing this complex and vital area of care.

Can you tell us about your background and your journey to becoming an associate professor in nursing with a focus on dementia care?

My interest in older people and those living with dementia began early, shortly after I graduated as a nurse in 1999 and started working in municipal health and social care. I felt strongly drawn to this field and continued working in elder and dementia care, apart from a brief period in neurological rehabilitation where I also encountered patients with cognitive challenges. The path felt fairly straightforward, but over time, I realised that we need to do more than just be present in direct care.

That insight sparked an interest in academic education. I had the opportunity to pursue doctoral studies in dementia care and defended my thesis in 2015, which explored the impact of therapy dogs on people with Alzheimer’s disease. The research gave me deeper insights into the complexity of nursing in dementia care. Shortly after, I began working as a lecturer at Dalarna University, where my colleague—and sister—Lena Malmståhl Hammar and I developed the specialist nursing programme in dementia care. So, the interest that began in clinical practice has taken me further into specialisation and education in the field.

What do you think motivated you to stay in this field from such an early stage?

I believe it had a lot to do with meeting a vulnerable group of people with deep and complex needs—people who required thoughtful care and support to live well. It felt meaningful to do good work for them. But at the same time, I increasingly felt that what I was doing wasn’t enough. I wanted to do more, and that’s what made the path toward specialisation and academia clearer.

How long did it take from becoming a registered nurse to moving into academia and doctoral studies?

I worked clinically for about ten years before entering academia around 2006–2007. I began my doctoral studies in 2010 and, as mentioned, defended my thesis in 2015.

One of the goals of initiatives like the Queen Silvia Nursing Award is to spark interest in elder and dementia care early in nurses' careers, rather than seeing it as something one does at the end to “wind down.” Have you seen a growing interest in academic dementia education, and what do you think is driving it?

Yes, we’ve seen increased demand and have been positively surprised. One possible reason is that the specialist training in dementia or cognitive illness is more specific than broader programmes like “elder care.” It’s clearer what you’re getting—deeper knowledge in a defined field. I see this growing interest both through the National Association for Specialist Nurses in Elder Care—where I recently became chair—and among our students and through our research.

The societal need is also more visible. As the population ages, dementia diagnoses are becoming more common, and we’re also seeing more younger individuals affected. Knowledge is in demand at all levels, including among assistant nurses and care aides—especially in terms of communication and managing BPSD symptoms. So I believe it’s a combination of a clearer educational profile and a growing, more visible societal need.

Do you think that a reduction in stigma around dementia has also contributed to the increased interest?

Absolutely. It’s incredibly positive that dementia is being discussed more openly—both the challenges and the possibilities of living well with the condition. Compared to when I began working clinically, attitudes have shifted. Back then, stigma was greater. Terms like “demented” were used, and people with dementia were often viewed as one homogenous group of “confused” individuals, which is completely inaccurate. While stigma still exists, society has come a long way—and that’s encouraging.

How do you view Swedish dementia care and education from an international perspective?

While I don’t have a full global overview, I know that there is active research collaboration within Scandinavia and in countries like the UK and the US, particularly around dementia care and person-centred nursing. Sweden has several leading researchers who contribute to the international field. Our specialist nursing programme has also attracted attention abroad—we’ve had students from Denmark and Norway, which suggests that similar targeted programmes may not yet exist in those countries.

One difference that often comes up is our model of specialised residential care, compared to countries where family members are more likely to provide care at home. But caring for a loved one with advanced dementia at home can be extremely demanding, and research shows increased risks of poor health and even suicidality among family caregivers. In Sweden, we still face challenges in providing adequate support to those caring for the most seriously ill at home.

Yes, it requires very specific knowledge to care for someone with a complex brain disease.

Exactly. Burnout is common among family caregivers, who are often older themselves and may have their own health problems. This is where nurses and specialist nurses in municipal care play a key role—they have a responsibility to support, relieve, and help families determine when it’s time to consider other care options, so the caregiver doesn’t reach a breaking point.

What are the biggest challenges new specialist nurses face when entering the workforce?

Many describe a kind of “aha moment” after graduating—they begin to see things in a new light and often wish their colleagues had the same perspective. They feel equipped to make a difference. But one of the biggest challenges is that employers and managers don’t always know how to utilise this specialist competence. It can be tough to return to your workplace and essentially “invent your own role.” We need to do more to define and highlight the specialist nurse’s function.

Ideally, the specialist nurse would be responsible for in-house training, lead team reflections on ethics and communication, and act as a care leader in daily practice. But to make that a reality, we need both more specialist nurses and greater awareness among employers about what the role entails.

It sounds like the classic challenge of being a “prophet in your own land.”

Exactly. But there are also encouraging examples where organisations see the value and give specialist nurses a more strategic role—such as overseeing dementia care development at the municipal level. And that’s one of the main purposes of the training: to improve care on multiple levels.

How has the education itself evolved to keep pace with new research and societal shifts?

We continuously update the programme based on the latest research and national guidelines. There’s a strong emphasis on person-centred care—seeing the individual behind the diagnosis and understanding their personal experience and life world. We also focus on leadership and the nurse’s ability to drive quality improvement. When new research or reforms emerge—such as Sweden’s “Good and Close Care” initiative—we integrate them into course content, adjust our focus, and select relevant literature to keep the training current and meaningful. Students’ real-world experience is also a vital resource in our teaching.

Is the perspective of family members an important part of the programme?

Absolutely. Understanding and supporting family members is central. The relationship between the person with dementia and a close relative is unique and can be a great asset in care—helping to trigger memories and create meaning. At the same time, it’s essential to support the caregiver, who often carries a heavy burden. It’s about seeing the whole picture and making the most of the relationship and life story—for the benefit of both parties.

What skills and knowledge do you consider most essential for a dementia care specialist nurse today?

At the core is the ability to see the whole person—to understand their history, life story, and try to enter their “life world,” their subjective experience in the here and now. That requires going beyond checklists and routines. Sometimes you have to set the list aside and meet the person where they are, responding to the moment. The ability to support and engage with family caregivers is also absolutely fundamental.

A specialist nurse also needs to recognise that their role is both unique and essential. They possess specific expertise that is critical to providing quality dementia care. At its heart, this is advanced nursing practice grounded in a deeply humanistic approach.

How do you work to make the programme more attractive and reach potential students?

With limited resources for marketing, we mainly rely on our networks and contacts with organisations and care providers. We have an informative website, including a film about the programme and the specialist nurse role. Our former students are our best ambassadors—many go on to recommend the programme to others. We also try to demonstrate that we, as educators, are actively involved in research and take part in relevant discussions, like this one. Our ongoing development and up-to-date content hopefully spark interest as well.

Do you use any particular teaching methods in the distance-learning format?

Yes, the challenge with distance education is keeping the pedagogy engaging. We make extensive use of case-based learning, where students work with real-life scenarios—often based on their own experiences. They analyse each case from the specialist nurse’s perspective at the micro, meso, and macro levels, discussing both clinical and ethical aspects. These exercises often lead to deep reflection and learning.

We also encourage students to recognise their ability to influence beyond the individual level—to raise their voices and bring their expertise into the organisation and society at large. Seminars where students can discuss, debate, and challenge one another are also an important and well-loved part of our approach.

It sounds important to empower them to recognise their potential to create change.

Exactly. It’s about realising that the knowledge they possess is unique and needed at every level—not just in direct patient care. Nurses with expertise in dementia care should be given space to share their specialised knowledge and take on influential roles.

What does collaboration between academia and healthcare services look like?

We don’t have a formal “academic care unit,” but we work closely with various care providers—especially when it comes to students’ clinical placements and quality improvement projects. We maintain ongoing dialogue with managers and supervisors to understand the real-world needs and ensure the education is relevant.

One example is our collaboration with dietitians from Nutricia on a course about nutrition. That partnership has been greatly appreciated and has sparked concrete improvement ideas among students. Working across professional and organisational boundaries is absolutely crucial.

Looking ahead, what do you see as the most important areas for development and the biggest challenges in dementia care and education?

The new Alzheimer’s drugs raise many questions—about administration, access, and equality—that we need to start discussing and preparing for, both ethically and practically.

Another major challenge is the division of responsibilities between the Health and Medical Services Act (HSL) and the Social Services Act (SOL) in municipal care. Currently, nurses operate under HSL while care staff fall under SOL. This rigid separation makes teamwork and a holistic approach more difficult and can pose patient safety risks. The specialist nurse’s responsibilities span both domains, including social aspects of care. We need to soften those boundaries and strengthen interprofessional collaboration.

This will require dialogue with authorities and organisations to clarify the role and responsibilities of the specialist nurse, particularly in overseeing the overall quality and continuity of care.

What advice would you give to nurses considering specialising in dementia care?

Do it! Knowledge about dementia is relevant in almost every area of healthcare. No matter where you work, you will encounter patients with cognitive challenges, and having deeper knowledge will be invaluable.

Where do you think dementia care and related education will be in ten years?

I hope we’ll have made real progress in integrating HSL and SOL, and that interprofessional teamwork will be much more standardised and natural. That alone would significantly improve care. I also hope the stigma around dementia will have decreased even further, and that we’ll have a more coordinated and proactive plan to meet the needs of the growing population of older adults with cognitive impairment and dementia.