Elin Høgmo (67) and her cohabitant pack their things in boxes and crates.
The apartment in Orkland municipality is being abandoned these days, in favor of a new – and smaller – apartment in Trondheim. It is good that they get spacious stalls, which can accommodate everything they can not fit.
The reason they move is not about space. But about health.
The veil of oblivion
Elin worked as a senior adviser in the Norwegian Labor Inspection Authority. But something happened, gradually. She began to forget.
– People could say to me that “this is what we talked about the other day”. Not to be rude, but it happened more and more often. I forgot, Elin explains.
– I simply could not remember that we had talked about yours and hers.
She was often responsible for writing minutes of meetings. Cohabitant Jens Rian Hansen (68) describes tiring evenings and nights.
– She sat far beyond working hours to put together these minutes in the right way, and struggled to remember.
They went to the GP. But Elin was not even in her mid – 60s. Only when she returned to her doctor the same year, and she did not remember that she had been there not long ago, did it dawn on everyone. Something was wrong.
– There was a visit to the hospital where a spinal fluid sample was taken, Jens recalls. It revealed that she had contracted the brain disease Alzheimer’s.
The relative burden amounts to 28 billion
The societal costs associated with what constitutes the burden of relatives is, according to a new report from Menon Economics, NOK 28 billion in 2020. The term relative burden is used in the report as an expression of the negative consequences the disease has for those closest to it.
Half of the costs are related to the relatives’ burden of illness.
– WARNING: Secretary General Mina Gerhardsen of the National Association for Public Health reports on the many relatives who become exhausted and even ill. Photo: Gorm Kallestad / NTB
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– Dementia is often regarded as a relative’s illness, because many people wear themselves out and become ill themselves, says Mina Gerhardsen, Secretary General of the National Association for Public Health.
Informal care is estimated at NOK 10 billion in 2020. Statistics Norway has estimated that the relatives’ total efforts amount to 90,000 man-years (2017).
Many relatives choose to either quit their jobs or reduce their job share. According to the report, this means a production loss of two billion kroner.
The relatives’ disease burden amounts to NOK 14 billion.
Informal nursing and care amounts to NOK 10 billion.
Lost income amounts to NOK 2 billion.
Health services for relatives amount to NOK 2 billion.
The big work day
Jens is one of several hundred thousand relatives of a person with dementia in Norway. 90 per cent of all people with dementia receive so-called informal care from relatives or friends. An enormous amount of work is put in to take care of those who are no longer able to take care of themselves.
– Jens is a very calm guy, he does not get excited, says Elin about her life partner.
It can probably come in handy now.
– We only had one choice when this came for one day, it is to take one day at a time, Jens thinks.
And one day they decided to move. A couple of municipalities away, to the much larger municipality of Trondheim. There they have an offer that the couple feels confident in is the best for them.
– NEED EACH OTHER: Elin tv thinks it is best to be in a group with others with dementia who are not very old either. Here she is on a trip with leader Elisabeth Høstland, Trondheim municipality. Photo: Stein Roar Leite / TV 2
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At Lavollen two days a week, Elin meets other young people with dementia. They go for walks, have breakfast together, and the conversation goes on.
– Sometimes I forget what we talked about last time in the group, but I can not take it so seriously. I have decided not to worry so much about it. Yes, the brain cells die, but there is a lot I can do physically, says Elin.
One day comes when Elin can no longer live at home. In the package process Trondheim municipality offers, a place in the nursing home is a safe end station.
– We know which way it goes, so then it is reassuring to know this, Jens states.
Small municipalities have given up
Norway currently has 101,000 people with dementia. In the decades to come, this number will more than double.
– We hear municipal politicians say that we will not be able to do this. The national effort must be all the greater, because especially small municipalities will have a problem with the combination of more older people, and a lack of younger people who can be there for them, says Mina Gerhardsen.
The outlook report from the government concludes that every third employee in the future must work in the health sector.
– It is unrealistic to imagine, therefore you have to work in different ways. Care technology together with the fact that more people take health education, and that they get conditions that make them able to stand in it until retirement age, Gerhardsen remarks.
But the Secretary-General is sure that there is only one on things that can stop the dementia disease.
– We must invest in research and find a cure. Since dementia was discovered over a hundred years ago, there has been no breakthrough so far.
– THE FINEST SERVING: Elin th is very happy with the serving at Lavollen. The group for the younger demented people meets and talks over coffee and slices of bread. TV manager Elisabeth Høstland. Photo: Stein Roar Leite / TV 2
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In Bymarka outside Trondheim, Elin meets others in the same situation, who go by the name younger with dementia. Vigorous as some of them are, they can go on long walks.
– It is so important to move, that brain and body can work together, says Elisabeth Høstland, one of the driving forces behind the offer.
– It can clearly have a slowing effect, she believes.
– I do not get any finer serving than here, says Elin. She smiles broadly as she is served coffee and gets smeared sandwiches.
Training against brain death
Every week, the cohabitants meet at a fitness center to train on a spinning bike. They think it can slow down development.
– SPINNING AGAINST BRAIN DEATH: The cohabiting couple trains weekly at a fitness center. They believe that this can help with brain disease. Photo: Stein Roar Leite
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– We have heard that high-intensity training can help the brain against this disease.
Elin was once a reading horse. She’s not anymore. Remembering today what she read yesterday has become difficult. The swing has failed. With knitting it is different. In the easy chair she knits. And she can watch TV, but not series that require you to remember the last episode.
– I want to stay at home as long as possible, says Elin and smiles at her husband.
– I have not lost the courage to live, I do not want to just exist.
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