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Tomaž Gržinič, member of the EWGPWD, reflects on the importance of timely diagnosis, discipline and living fully every day

Friday 13 March 2020

Tomaž Gržinič, member of the European Working Group of People with Dementia (EWGPWD), recently had an interview for a well-known media webportal, His statements were informed by his own personal experience and challenges, since his diagnosis of early onset dementia. He says that dementia has become his life partner, and with smile on his face, continues: “I am a sociable and active person”. These are his words:

Dementia has not interfered with my daily routine in a harmful and dysfunctional way. I still have control over all aspects of my life and I am sure that dementia has helped me to organise my activities even more. The first symptom that I experienced of dementia was poor orientation in unfamiliar places. But I was still not overwhelmed, as orientation was always one of my weakest skills. The most dramatic reduction in my spatial orientation was the day that I realised that I had lost my way on a very popular trail near Ljubljana. I realised that it was better for me not to go for long walks on my own and I made the decision to rearrange my walking habits.

Several years ago, my father was also affected by Alzheimer's disease. So I am sure that education about dementia plays a crucial part in timely diagnosis. A decade ago, you barely heard a word about dementia. Also, cognitive decline was understood to be a normal part of ageing. I first noticed gaps in my memory in 2016 and knew that it was time to make an appointment at the doctor. In order to know whether I had mild dementia or whether the cause lay elsewhere, my neurologist proposed a CT image, but to be 100% accurate, he also tested for possible biomarkers. The results showed me that I was in the initial stages of dementia. I was referred for an MR scan, which showed a normal state of brain matter.

Finding out that I had dementia was a very emotional event. I am so thankful for the support of the EWGPWD, where other members are also sharing their experiences of the potential risks and benefits of living with dementia. However, I have taken a very positive outlook and I feel that my quality of life might even have improved. Since my diagnosis, I have become less stressed and angry. I take my time and am patient with myself. I am very disciplined in my life. I never risk putting my personal belongings in different spots. Keys, wallet, mobile phone are always on the same shelf in the hall. Dementia has affected my driving a bit, so I only drive to destinations that I am familiar with. 

Speaking of tasks and activities, my normal week is very busy. On Monday afternoon, I play tennis and the evening is reserved for a traditional dinner with 10 lifelong friends. We have been hanging around together for almost 40 years! On Tuesday morning, we hike up the nearest hill, Orle, and have lunch and chat together. On Tuesday evening, I play table tennis. On Wednesday morning, I play tennis again, while in the afternoon, I have free time. On Thursday evening, I play table tennis again. Friday is a day for myself. During the weekend, I regularly drive to my weekend house in Kurešček, where I have a small garden of vegetables. I cultivate almost all types of vegetables by myself. Since my diagnosis, the state of my disease is more or less the same.

Sharing the diagnosis with my friends was a very comfortable experience. They are very tolerant and often make jokes that they are even more forgetful than me. So I am never ashamed of my disease. Friends are a huge support for me. It means a lot, when you're not alone and can always call your “buddies”, when you need to talk to someone, ask for advice or just make an afternoon more interactive. To be engaged with different activities also helped me get through a time of grieving, when my wife passed away. I was determined, I had to find ways to make my long afternoon hours active, sociable and productive. I followed through on this idea, as when I am with friends, I do not have time to overthink or analyse everything too much. I always apply for all annual regional competitions for table tennis or tennis just to stay busy and fit. Regularly, I make short trips into neighbouring countries with my son. From my experience, dealing with dementia is better done with humour, rather than without. I am not overly occupied with thinking about what the future will bring. I live for the moment, for each day. I am also sure that my activities will slow down the progression of the disease. Honestly, I am a little afraid to reach a severe stage of dementia as my father did. But I am trying to stay optimistic for now.

Dementia can interfere with your personality as it can strengthen some behaviours and reactions. But even so, everyone must be treated with respect and dignity. Accepting dementia is also very important and helps to overcome stigma, anger and fear. People with dementia still have feelings and it is OK to show them, not to supress them. It is much better to know what to expect rather than live in denial, believing that “dementia cannot happen to me”. Timely diagnosis is beneficial in every sense. It takes a lot of courage, to step forward and adapt your lifestyle, but sooner or later you will accept it as a part of your life and make every day meaningful for you. I believe that every country should develop screening tests for dementia for everyone after the age of 65. Medical staff should encourage all older people to follow a healthy lifestyle and prevention techniques, even if no signs of dementia have been detected.