Receiving a diagnosis for dementia can be life-altering. On the one hand, a diagnosis may provide an explanation for any unusual changes that a person might have been experiencing. On the other, it is often accompanied by grief, shock, loss, or fear about the future and many other emotions which can be quite overwhelming. Dementia disease can significantly affect the life of a person. There are many things to consider when one receives a diagnosis. Designing a care plan, securing finances, making important personal decisions are some of them.
However, life doesn’t automatically come to a standstill with the onset of dementia. Many people continue to go to work, participate in regular activities and live life as usual. While the progression of many types of dementia is inevitable and irreversible, with the right kind of care and treatment, it is possible to support the person in better managing the symptoms. It is also possible to aid them in maintaining a high quality of life throughout the different stages.
SCI had the opportunity to speak with Ms. Annalena Svensson who received a diagnosis for Alzheimer’s disease in 2018. An ambassador for the Swedish Alzheimer Association (Alzheimerfonden), Ms. Svensson shared how the diagnosis affected her and how she has coped with it since.
“I was working at a US pharmaceutical company around 2010 when I first started having some minor memory-related problems. However, over time they started becoming more frequent and interfering with daily tasks. I went on a business trip once and forgot which bus to take home. That’s when I realized that something might be wrong.
I returned from that trip and left my job to work at my previous employers as a medical secretary. I could feel that something was different even though the job was exactly the same. I was making many errors in the journal entries and my colleagues were also pointing out my forgetfulness. Then one day I came across an online article on cognitive decline. I could resonate with what was described. I felt like it was something for me. I then brought this up to my supervisor and talked about my experience and my findings about cognitive decline. He suggested I undergo a lumbar puncture to find out what exactly is affecting me.
The results came back with a diagnosis for Alzheimer’s disease.”
How did you manage your diagnosis? What advice would you give to someone who receives one?
“At first, I didn’t talk about it with everyone. I needed to let it sink in. You have to give yourself time to absorb all the information. I read every word of the report over and over again to normalize it.
I would cry all the time. Over time I realized I couldn’t do that forever. I opened up and shared my diagnosis with other people. My best friend was the first one to find out. She said, ‘You know, I will follow you all the way, I promise you’ and she has.
Eventually, I started looking for other people living with dementia so I could hear about their experience. Young people who receive a diagnosis for early-onset dementia will benefit from speaking with other people in a similar situation. I began going to care centers with activities for people living with dementia under the age of 65. However, I found that most of the people there were much older than me. The group also changed each time I went so I never saw the same people long enough to form any real connections.
I think there need to be more programs for young people with dementia and those which focus on the differences between the way men and women are affected. I, for example, would want to hear from another young woman in the same situation as me.
There is a lot of uncertainty about the disease. You don’t know how long it will take to reach its peak – 1 year? 3 years? Maybe even 7? Throughout this time it is important to be in the company of people in the same age group with similar interests and make the most out of life.”
How has the diagnosis impacted you?
“Alzheimer’s disease affects my everyday life. I left my job as a medical secretary and started working at my friend’s company to help out with smaller tasks. However, it’s not as though I am not capable of doing anything. I contribute in ways I can such as with the packing of goods. I engage with the people, eat lunch with them – I still have a lot of good work to do.”
What are the practical aspects of securing life after receiving a diagnosis?
Finance is a big one. In my family, it’s not too big of an issue. I receive support from the Swedish Social Insurance Agency (försäkringskassan) which is enough to cover my daily expenses. My husband is employed full time and his salary is able to support our other needs. My children are also self-sufficient. However, we do not have disposable income for recreational activities.”
How do you stay active?
“Well, the summer months are good because there are lots of activities happening. It’s difficult when it’s cold and there is less to do. In the winter, there are activities for people with Alzheimer’s at different care centers, however, it’s usually things like lacework and embroidery which I do not particularly enjoy.
In the summer I participate in a cycling race which is a part of the Swedish Classic Circuit. In addition, I try to exercise as much as possible and enjoy running in the forest among other things.”
Summing up, Ms. Svensson emphasized that when it comes to diseases of cognitive decline, everybody – the person, their caregivers, employers, colleagues, loved ones and friends – have a lot to learn.
“Just take it a day at a time.”