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The first session of the conference presented current dementia trends on a broad scale from global perspectives to personal experiences.

World Health Organization statistics and guidelines were presented by Stefania Ilinca, Technical Officer at WHO, and were brought home by a deeply personal story by Pia Knudsen, Dementia Ambassador from Denmark, who lives with the disease. The session began with an introductory speech by Anna Tenje, Swedish Minister for Older People and Social Security, who outlined the situation in Sweden.

Anna Tenje, Minister for Older People and Social Security in Sweden: Introduction

Minister Anna Tenje highlighted a common trend across the Nordic countries of an ageing population living longer and healthier lives.

– This is a very positive development, but it also comes with new challenges, dementia being one of them. The growing number of people with dementia will put increasing demands on our health and social services.

Minister Anna Tenje emphasised recent advances in dementia research and notable breakthroughs in prevention, citing the FINGER study, which Professor Miia Kivipelto later discussed in detail during her keynote speech at the conference. The minister noted that the current Swedish national strategy for dementia primarily focuses on care, but efforts are underway to develop a new strategy with a broader scope.

– One focus of the new strategy is the prevention of dementia, as we now understand that certain lifestyle choices can influence the disease. Although dementia cannot be entirely prevented, in some cases its onset can be delayed.

The minister also shared an example of a prevention model already in use in the Swedish municipality of Lidingö. The Träna Hjärna programme (Train Your Brain) is aimed at people over 65 years of age to maintain and prolong their everyday independence, general health, and quality of life.

Stefania Ilinca, Technical Officer, WHO Regional Office for Europe: The WHO recommendations on dementia prevention and brain health promotion

Dementia is a global emergency, and the World Health Organization is working extensively to address this crisis. In 2024, for the first time, the number of people aged over 65 in Europe will surpass those under the age of 15. By 2050, the population aged 80 and over in Europe is expected to nearly double. Stefania Ilinca, Technical Officer at WHO, emphasised the need for increased focus on extending healthy lifespans.

– It is a sign of societal progress that we are living longer lives. However, it is within the oldest age group that we observe the limitations of the policies we have implemented. While it is very positive that populations are ageing, it is concerning that we are not ageing healthily.

Stefania Ilinca notes that dementia is just one of many factors, though still a very important one, when it comes to years lost to disease. Alzheimer’s and dementia are the seventh leading cause of death globally and the fourth in high-income countries. Projections suggest they may soon become the third. Women represent the majority of both people living with dementia and those providing care for them. 

– It is crucial to focus not only on the prevention of dementia but also to address the inequalities embedded in every aspect of the disease, from exposure to risk, access to diagnosis and treatment, to the quality of care. Gender is just one of these inequalities.

– Stefania Ilinca, Technical Officer, WHO Regional Office for Europe

Stefania Ilinca said that estimates place the global financial burden of dementia at nearly 1.3 trillion US dollars, with half of these costs borne by families providing informal care.

– In the presence of a considerable and growing burden of dementia and in the absence of a disease modifying treatment, it is essential to step up prevention efforts, encourage the development of a positive narrative focused on health promotion, and invest in high-quality care.

The current WHO guidelines for dementia prevention date back to 2017 and are aimed at health care professionals. These guidelines are currently being updated and expanded, incorporating new research data, with the revised version expected to be published in 2026.

– We are fortunate to have a very dynamic field of research. For most risk factors, there is strong evidence regarding what needs to be done, but unfortunately, this is not implemented universally.

Stefania Ilinca points out that there is often a false sense of dichotomy between the period before and after a dementia diagnosis. Once dementia has begun, it is mistakenly believed that the opportunity for prevention has passed.

– But brain health exists on a continuum. Just as we define health as not merely the absence of disease, brain health is not simply the absence of brain disorders.

Stefania Ilinca reminds us that everything beneficial for the body is also good for the brain, at all stages of life. Early interventions are crucial, and efforts should be focused on improving health and preventing the conditions that lead to functional decline. Even in the presence of disease, the emphasis should remain on functioning, as there is still much that can be done.

– It is never too late, regardless of brain disorders, to invest in maintaining functioning, dignity, and independence. The aim of long-term care should not only be to compensate and assist, but very explicitly to prevent, mitigate, and reverse functional decline wherever possible.

Stefania Ilinca says that, in many regards, the WHO views the Nordic countries as front runners in these areas and considers them a good example to follow.

– We can do a lot to prevent dementia, but we can also do a lot to prevent a dementia diagnosis from being a sentence to a life not lived to its fullest.

The importance of preventive measures – a personal story

The conference took a more personal tone as the next speaker, Pia Knudsen, shared her own experience of living with dementia. While she acknowledged that she is not an expert in dementia research or policy, she still considers herself an expert on dementia in the most profound sense.

– I am 61 years old and have been living with Alzheimer’s for the past four years.

Pia Knudsen says she has always been inspired by young people. For most of her career, she worked as a Folk High School teacher, specialising in visual art and design. She is also an artist, whose work has been exhibited in various locations across Denmark and throughout Europe.

– When I look back at my life before the diagnosis, it was playful and carefree. I took life for granted and did not hesitate to book holidays abroad a year or two in advance. I was certain I would remain a teacher for the rest of my life.

Before her diagnosis, Pia Knudsen began noticing changes and felt increasingly stressed. As time went on, things worsened, and despite having a good life, she felt an overwhelming sense of sadness. Her doctor, suspecting dementia, referred her to a neurologist. Then followed a ten-month period of uncertainty before the diagnosis was confirmed.

– It was dementia. I was shocked. I hadn’t seen it coming, even if we have it in my family. I couldn’t believe it was true.

Pia Knudsen describes her initial feelings after the diagnosis as if she were watching her life unfold like a movie, overwhelmed with fear and grief about all the things she would miss out on. Her life also changed in very tangible ways.

– My boyfriend left me. I was fired from the job I loved. My boss didn’t believe I could handle my duties, and it felt as if dementia was branded on my forehead, signalling that I wasn’t the same person today as I was yesterday.

Pia Knudsen says that loneliness has become a new condition of her life. As the disease progresses, it becomes increasingly difficult to fill her life with positive experiences. She describes the feeling as claustrophobic, as the part of her brain where creativity once thrived seems to shrink by the minute. She finds it harder to engage in conversations, which makes her appear distant. Despite this, she feels fortunate to live in Aarhus, a city with well-developed services for people at early stages of dementia, although accepting help has been a challenge for her.

– My life began to regain its sense of purpose, when I finally gathered the courage to join the municipality’s training programme, Demenshjørnet. It’s where I exercise both my body and mind several times a week and I’ve formed strong friendships with the people there. I met the right people at the right time, who truly saw me and my potential – not just the disease.

Pia Knudsen says many doors have opened since then, and her life has changed – for better or worse. She believes it’s mostly for the better, highlighting the meaningful friendships she has formed with others in the same situation.

– My life, in general, has regained its sense of meaning. It is invaluable to be a part of communities that understand life has an expiration date. As a result, I cherish each day.

As a dementia ambassador, Pia Knudsen says she regularly meets influential people and appears in the news. She has created a new role for herself as a spokesperson for people living with dementia. She is particularly keen to highlight the vital role of dementia services and points out that these services are lifesaving for people who have lost many things that previously filled their lives with meaning.