Dementia – the elephant in the room

Will you tell friends and acquaintances if you or a loved one has dementia? For many, the answer is no. What makes it difficult to talk about dementia?

Today, according to the National Institute of Public Health, there are about 101,000 people with dementia living in Norway. If we thought that each of these people had four relatives, the dementia disorder would affect the lives of half a million Norwegians. And as the number of older people grows, that number will double by 2050.

Shame and taboo

Dementia is a collective term for a number of diseases that affect the brain, the most common of which is Alzheimer’s disease. The word dementia is derived from the Greek and originally meant soulless/mindless. Madness, old fashioned, or childhood gone are other terms that have been used around this condition. Only this can make one refuse to talk or talk about the disorder.

When we ourselves, in old age, are distinguished by youth and high mental ability, it becomes difficult for us to progress with memory problems, failed orientation and learning difficulties.

Feeling that you are no longer participating or able to participate can lead to feelings of shame and withdrawal, both for the person with dementia and for their relatives. Despite the increased focus on dementia and continued media coverage, research shows that shame and taboos are still associated with the disorder.

Stressful to hide dementia

What if you or someone close to you has dementia. How open are you about the challenges that arise? What will you say when the certificate is revoked? Will you be open, or will you let it pass in silence for as long as possible?

A nurse working in the assessment of need for assistance and the allocation of municipal health services told me about the challenges associated with this assessment. In some families, they spoke of dementia openly as if it were a chip on a finger. On the other hand, in other cases, the dementia was like the big elephant in the room. It filled the entire room, but no one talked about it.

They did not talk about dementia even though dementia made them need municipal health services.

When you don’t want or can’t talk about the fact that you or someone close to you has or is in the process of developing dementia, it can be very stressful. Plus, it can lead to you not getting the help you need. Research shows that relatives do their best to care for and dignify those who develop dementia. It can be very difficult for relatives to talk about the challenges that have arisen with a person with dementia. You want to take care of the sick and spare them. It is often a difficult situation to stand up for all parties.

Wanting to talk about dementia

I have spoken to many elderly relatives. We can call one of them Berit. Beret is an old lady who said that in her monthly meeting with her friends she experienced that there was a lot of talk about herself and about her husband’s bad hips and other flaws. Various health problems were discussed in terms of seriousness and laughter. But never dementia:

It was almost hard to be able to tell who had the biggest heart attack. But there was no talk of dementia.

She was up in the air, but no one asked Berit about her husband’s dementia. Perhaps there was a question whispered, with two hands, in the hallway on the way home, as she bent down to put on her shoes: “How is your husband?” She said that she really needed to talk about it, but somehow there was no room for that.

Unfortunately, this story is not unique. Although there is greater openness about dementia, in part on the basis of individuals’ stories in the media, media campaigns, trainings and relatives’ schools, there is still much work to be done for more openness about dementia.

We can make it easier for those affected

There is no cure for dementia. This can be a contributing factor to the fact that it is difficult for many to talk about. We don’t know how many years to come a curative treatment will be available. We have no choice but to hope that the search progresses quickly and that high results from the search front can’t wait. In the meantime, the work of information, information and attitudes that has begun must continue, albeit with increased pressure. There should be no more taboo or more difficult talk of dementia than a heart attack.

We all have a responsibility to create an open and inclusive community. There may be additional responsibility for the employees and managers of the health services, educational institutions, and politicians who allocate funds for health information.

Only when we dare describe it in words do you dare ask and speak frankly if the elephant in the room will disappear. Beret will be able to talk freely about dementia with her friends as they talk about bad hips and heart attacks.

The article was first published on Forskning.no