A less common dementia disease, but no less cruel, is Frontotemporal lobe dementia with a prevalence of about 5 % of all dementia cases. As the name suggests it is part of the frontal cortex that is affected, an area that controls impulses, judgement and our personality. Normally the disease strikes in age groups between 50 and 60 years old and is highly strenuous on relatives.

Elina Krook, 23 years old from Sölvesborg in Sweden is one of those relatives. Her father Jan was diagnosed with Frontotemporal lobe dementia three years ago.

Initially the family thought that Jan was suffering from depression since Elina and her two brothers recently moved away from home, but during a vacation in the Philippines they realised things were much worse.

Jan went from being a warm and loving person who always put his family first to becoming extremely egotistical and acting oddly.

-He was acting like a small child, he took food from other people’s plates and told the same story over and over again, Elina recalls.

On the plane back from the vacation Elina’s mother was in tears. And there were more sorrows to come.

Compulsive behaviour

The escalation of Jan’s disease was very fast and were amongst other symptoms manifested in his compulsive behaviour. As soon as he saw a soda can he was resolute to recycle it at a recycling station. He stopped using the restrooms in the house and used their garden instead. He could cycle to the bank repeatedly, uttering the words “camera with us”, time and again.

– The advantage of living in a small town is that everyone there knew who dad was. We were completely open with his diagnosis so when something happened people knew they could contact us, Elina says.

Domestic violence

Eventually it became impossible for Jan to live in his home. He had become increasingly violent and aggressive toward his family. On Christmas eve the family had a row over a TV-show that was on. When Jan wanted to turn it off and his son refused to give him the remote he attacked him and tried to strangle him. Elina had to hit him as hard as she could in order to make him let go.

– It feels like an image of this is etched on my retina. I see what happened repeatedly and it scares me every time. It will take a long time before that image fades, Elina says.

About a year ago their father, against his will, was moved to a dementia care home in Fogaröd in Höör in Sweden, a home adapted for younger sufferers of dementia.

– It was a very difficult decision, especially for mum. Dad wants to go home and is constantly packing his suitcase. He has no idea he is sick and he doesn’t understand why he is there.

– I miss my father tremendously. It hurts to se him disappear from me. He is there. I can touch him, but he has become a shell of his former self with nothing within, Elina says.

The hereditary issue is stressful

Something that is often on her mind is that the disease is hereditary.

– Sometimes I feel like I have to hurry to do the things that I want to before I get ill.

At the same time she tries not to let the issue control her life.

Family is invaluable

During this time when the father have been ill the relationships in the family have changed. The three siblings have become very close. Elina explains that they value each other more now.

– Some friends, both old and new, have also become closer, those who are brave enough to learn about dad’s disease. At the same time others have distanced themselves from our family due to ignorance and fear. They don’t know how to handle the situation, Elina says who wishes that the disease was not so stigmatised.

Keen blogger

Elina writes the blog “The five of us together” where she openly talks about life with her ill father. She writes:

“ The only thing I can do is spread knowledge. I want to give people an insight into our daily life, which might increase understanding and make people think about this as well as being more grateful for their family and friends. You never know what your future holds, and suddenly your life can be turned upside down.”

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