My life with Alzheimer’s disease: Living better with a diagnosis

Birgitta Martensson, former CEO of Alzheimer Schweiz Suisse Svizzera, writes about her journey in seeking and receiving an Alzheimer's diagnosis and why she feels it's important to share with family, friends and those she meets.

In this blog, Birgitta Martensson writes about her experience of receiving an Alzheimer’s diagnosis after several years of trying to seek answers following initial concerns about her memory. She also shares what this diagnosis has meant in her day-to-day life, in both sharing with family and friends, as well as for the wider community.
Birgitta was the CEO of the Swiss Alzheimer association, Alzheimer Schweiz Suisse Svizzera, for nearly two decades, as well as a Board member of ADI from 2015 to 2021.
As the global population ages and more people are diagnosed, it is imperative that the public has a better understanding around the signs and symptoms of Alzheimer’s disease and dementia. Through continued advocacy and awareness campaigns, individuals, like Birgitta, are better empowered and educated to consult with healthcare professionals around any noticeable signs or concerns, as well as gain a better understanding of how to manage their illness if a diagnosis is confirmed.

Between 1999 and 2015, I served as Executive Director for Alzheimer Schweiz Suisse Svizzera. The reason I took the job was largely because my mother had lived for 15 years with Alzheimer’s disease before passing away in 2000. Later on, my elder sister would develop Alzheimer’s disease as well. For a long time, my life has been very closely linked to Alzheimer’s disease and other forms of dementia.

The first time I became aware that I may have dementia was in 2015 during my final year working in the office. I noticed that collaborators began to often say: “But Birgitta we have already discussed or decided that”. I realised that I wasn’t remembering conversations, which had almost never happened before. It was quite a surprise to all of us.

I waited more than six months before I contacted Professor Démonet, who was the leader of Leenaards Memory Centre CHUV Lausanne University (Switzerland), whom I already knew well, thanks to my work. Over a course of nearly five years, I went through an extensive number of examinations using all well-known clinical methods.

The result every time was that I was in the average for my age group. But I kept saying that I was absolutely sure I must have Alzheimer’s – and I was right.

My diagnosis was finally made after a lumbar puncture. Often, many people seeking a diagnosis will hesitate to undertake this procedure because they are frightened of the possible secondary effects.

The two biomarkers that were studied from the puncture were clearly positive and confirmed the diagnosis of “pure” Alzheimer’s disease which I have been told is interesting for research purposes because I have no other detectable causes like signs of vascular dementia. For me, the main advantages were that I was finally confirmed to have the condition and that I could now clearly explain to people around me what was happening with me.

Telling people is living better

After the diagnosis, I started informing family members and close friends, and then eventually widened the circle to neighbours, service providers and other people I thought would be interested or should know.

When I first began to tell people that I had Alzheimer’s disease, most tended to say that it wasn’t possible – because they didn’t want to speak about it or didn’t know the symptoms, – or they waved it away, saying that they too had memory problems. But once I began to explain the disease further, allowing me to share helpful information, I noticed that many people expressed their worries about their own memory or that of a loved one.

For this same reason, I accepted the interview in the Génération magazine. The article apparently has had quite an impact, with several people that I haven’t seen for years contacting me. Everyone points out that they admire my willingness to talk about my condition and very often, I realise that they are worrying about themselves or other close persons.

Since I have started sharing my diagnosis openly, I have only had positive experiences and many people say that they admire me for what I’m doing. I certainly live much better and safer that way than if I kept it secret.

Daily life needs more time and attention

So far my daily life hasn’t changed much, except that I need more and more time to find where I have left things and I don’t always remember where I usually keep them. I also have orientation problems and need to be very careful to find my way. More and more often I experience difficulties remembering people’s names, as well as book titles.

For me, it’s important to go on living my normal life: keeping up contact with friends, reading and continuing doing a lot of sports like walking, playing golf, cycling and fitness training. I drive my car and still travel on my own. I recently went to Ireland to spend Christmas with my niece and to Sweden to stay with my sister when my brother-in-law was away skiing for a week.

Regarding the future, I cannot imagine living in a care home as I have a strong need for independence after having lived on my own ever since I left school. A further reason is that I will probably no longer be speaking French so I will have to find another solution. Moving back to Sweden is not really on my mind – but who knows…

Birgitta was recently interviewed by a Swiss journalist for Generations, where she spoke more about her experience of being diagnosed. To read the interview in French (paywall), click here.
The World Alzheimer Report 2022 will be released on World Alzheimer’s Day, 21 September and will focus on the important subject of post-diagnostic support for dementia, including management of symptoms, societal perspectives on dementia management and more.
You can learn more about and read the World Alzheimer Report 2021, which focuses on the diagnosis journey, here.

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