“We still enjoy life in spite of the illness”

“My husband and I still make plans for the future. But the daily routines are almost more important. We make an effort to make them enjoyable and to get the most out of life,” says Ellý Katrín Guðmundsdóttir.

Just over three years ago, Ellý Katrín Guðmundsdóttir began feeling unhappy and unwell. Her colleagues at work had noticed that she wasn’t completely on top of things. She was getting things wrong that she was used to being able to do quickly, without any problem. She has a supportive boss who suggested that she should take some time off and also go and see a doctor to have some tests done.

Alzheimer’s disease

Five months later, Ellý Katrín Guðmundsdóttir got a shock when the diagnosis came back as Alzheimer’s disease. She had suspected it might be depression or chronic fatigue syndrome, or maybe that she had reached the menopause. But not dementia.

“From that day on, I had to start adjusting to a new life. It didn’t just affect me – it affected my whole family,” explains Ellý Katrín Guðmundsdóttir.

We meet on a beautiful August day in Reykjavik, the capital of Iceland. The Nordic dementia network is convening in Iceland and has the privilege of meeting Ellý Katrín Guðmundsdóttir and her husband, Magnús K. Magnússon. The subject of this network meeting is younger people with dementia (the under 65s). It is a common misconception that dementia only affects elderly people. Younger people can also develop the disease. Often it strikes when they are at the height of their professional careers, and it requires adjustment not just for them and their families but also for their bosses, colleagues and business partners.

Adapted tasks

Ellý Katrín Guðmundsdóttir still works in the same office she had when she was deputy mayor. But now her role is different and has been adapted to her changed circumstances. Being at work is good for her. Some things have become more difficult, such as reading or writing by hand. She can also feel more unsteady and tired during the day. But this feeling is made up for by the fact that she also feels she gets lots of support, help and encouragement from those around her.

“I get lots of love and support from the people around me. Both from people I know well and from others. People have come up to me and told me that I am helping to reduce the stigma and the feeling of shame associated with dementia.”

Since March 2017, Ellý Katrín Guðmundsdóttir and Magnús K. Magnússon have attended lots of events and talked about the illness that the family is living with. That was when the couple made the joint decision to start telling people outside their very close circle of family and friends about the condition. The ‘secret’ was a heavy burden to carry. What are you supposed to answer when someone asks, “How are you?” The truth, or a sanitised version, a lie?

“When there are no secrets it is much easier to answer questions. People know and people care and without all the secrecy there is no space for rumours and speculation. People understand why Ellý isn’t working if she doesn’t turn up at the office one day,” says Magnús K. Magnússon.

He has a job that allows him to be flexible and prioritise accompanying his wife when she speaks in public about her condition. He supports her when she needs support – and at other times he is there, sharing her experiences when she speaks about Alzheimer’s.

“Our focus is on the here and now”

The couple have a close relationship, and both feel that the illness is bringing them even closer together.

“Our focus is on the here and now. On getting as much out of life as possible. We go for walks around Reykjavik every day, attend concerts and enjoy music, visit nice restaurants and get out and about as much as we can. We are enjoying life more than ever,” says Ellý Katrín Guðmundsdóttir.

Ellý Katrín Guðmundsdóttir and Magnús K. Magnússon’s message to other younger people with dementia is that life does not end with the diagnosis.

“Look after yourself, be truthful and honest and enjoy life. Keep going, dementia is not something to be ashamed of,” says Magnús K. Magnússon.

How do you live with someone changing in front of your very eyes?

“First and foremost, you have to realise that we are all changing all the time. In my eyes Ellý is still the same person. I think we are the same and we do the same things we have always done,” says Magnús K. Magnússon.