When Marianne Mørck Danielsen's mother was diagnosed with Alzheimer's 15 years ago, they encountered a healthcare system that provided the diagnosis but little support.

What followed were years of shame, taboo, and a struggle for dignity – a fight Marianne now carries out publicly to help others in similar situations.

«You have early-stage Alzheimer's,» the doctor told Marianne's mother. «And you, Marianne, are the closest relative.»

With these words, a new era began in Marianne's life. Alzheimer's is the most common form of dementia and is caused by damage to brain cells and loss of nerve cells.

The meeting with the healthcare system was brief. They received a yellow note with a phone number for a resource centre and some general lifestyle advice. Then they were left to themselves, with a fatal diagnosis that would gradually rob her mother of her identity.

«Mom found it terribly shameful to get the diagnosis, so it remained a secret for many years. She didn't want to talk to me about it either. It was taboo because it was so stigmatising,» Marianne explains.

From shame to openness

Her mother, who had previously been outgoing, social, and loved dancing, withdrew from the life she had lived. Her workplace lacked awareness of the situation, which led her to quit.

«Had the employer had a minimum of knowledge, Mom could certainly have stayed at work longer,» Marianne says firmly.

This experience became a turning point. Eventually, Marianne realised that the only way to combat the stigma was through openness and knowledge.

A voice in social media

In recent years, Marianne has shared videos of herself and her mother on social media. These honest glimpses into everyday life with dementia have received millions of views. The response has been overwhelmingly positive, but some critical voices have also asked how she could «expose» her mother in a vulnerable situation.

«If we don't show what dementia is like, we won't recognise it and won't know what it is we're afraid of,» Marianne explains.

«Breaking stigma comes at a cost, and for me, this cause has become much bigger than just mom and me. It's not about us. It's about everyone who comes after and everyone who is going through it.»

A growing commitment

On August 8, 2025, her mother died as a result of Alzheimer's. Marianne has chosen to continue the work. So far this year, she has given over 40 lectures. She has started the podcast «Not Easy to Forget,» which is used as curriculum at universities and high schools. She works with municipalities, speaks with politicians, is a co-author of a new book on dementia, and lectures healthcare professionals.

«I travel around talking to relatives throughout Norway to tell them that they are not alone in what they're going through, and that they have the right to speak up and ask for services that give their loved ones a dignified life,» she says.

When Marianne gives lectures, she shares her personal story from beginning to end. She knows it's recognisable to many in the audience.

«There are lots of emotions, with sniffling and crying, and we laugh because we need to tell funny stories too. And when I finish the lecture, I have a queue of relatives who want to talk to me.»

The way forward

Marianne sees her work as a race between research on dementia and Alzheimer's on one side, and the fight against shame and stigma on the other.

«I think it's getting better. I think we'll become more comfortable talking about it and understanding it as generations pass,» she says.

But she emphasises that, as a society, we can accelerate both processes. Norway should invest more in Alzheimer's research while working for openness and understanding, her message says.

«Getting dementia is completely normal. It's a disease, just like many others. What's so shameful is that you lose yourself, and you're afraid people will see you differently than you were.»

Awareness is key

The solution, according to Marianne, is information and awareness. And progress is being made. The National Association for Public Health, for example, has developed a program for dementia-friendly communities, so that banks, shopping centres, bus companies, and others can meet people with dementia in a good way.

But more work needs to be done continuously to achieve the changes a vulnerable patient group needs.

«The role of caregiver is not one you wish for, but when this part of life turned out as it did, I've chosen to use my experiences to create positive changes in a field that desperately needs it. 

The work continues, both nationally and internationally. She recently gave a TED Talk, and Marianne has ambitions to reach an even larger audience.

«There are many things we can do, but we must do them together,» she concludes.