What people with dementia want you to know about dementia

Some 50 million people around the world live with dementia and, if the predictions are correct, in less than 10 years there will be more than 80 million, according to the World Health Organization (WHO).

Dementia affects each person differently and there is no treatment that can cure or reverse its evolution.

This condition, which involves the deterioration of memory, intellect, behavior and the ability to carry out day-to-day activities, has become one of the main causes of disability and dependency among older people.

It can be overwhelming not only for those who suffer from it, but also for their family members, who in most cases are their caregivers.

In this series of testimonials, some people with dementia and their families share tips for learning to live with the disorder.


“Don’t deal with paternalism”

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“Talk to the person, not the dementia,” advises Tommy, suffering from Alzheimer’s.

Tommy Dunne on the roadit’s atlzhIt’simer, which is the most common form of dementia (represents between 60% and 70% of cases, according to the WHO).

If someone asks me: “How would you communicate with a person with dementia?” I would say that the first thing to do is talk to the person, not the dementia.

The second thing is to get down to the person’s level: if she’s sitting on the couch, don’t stand next to her; get on their level, mantI eye contact.

Speak in short sentences.

Don’t ask several questions at once, such as: who? What? Why? Where? and when ?, all in a single question, because we cannot process all that.

Think about the questions you ask. Or don’t ask directly, I ateenza saying: “You remember…?”.

Many people are not comfortable with silence. If a caregiver is with a person with dementia, he begins to speak for her because he does not want her to be embarrassed, and ends up answering the question himself.

And what happens then is that if we don’t answer the questions ourselves, we lose the ability to answer them and we go deeper and deeper into ourselves.

Even though I have dementia, I’m still me. It is I who have dementia, it is not dementia that has me, we usually say.


“Get organized”

Dreane

BBC
Photos help Dreane remember people and places.

Dreane Williams has vascular dementia, the second most common cause of dementia, after dementia alzhIt’simer, according to the US National Library of Medicine. It is caused by a series of small strokes.

My best advice for dealing with dementia is keep a diary.

Also, next to each phone number I keep a photograph of the person or place. For example, I have a photo of the doctor’s office next to that number.

That helps me a lot.

I have a special watch that is quite large and shows me the time, the date, the day and the year, because sometimes I have no idea what day or what month it is.


“Do not lose hope”

Paul

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“There is hope,” says Paul.

Paul Hitchmough also has alzhIt’simer. The disease begins slowly, first affecting the parts of the brain that control thinking, memory, and language.

When people are diagnosed with dementia, they need help as soon as possible. They don’t need to lie back in an armchair and watch TV all day because that will just go downhill.

They need to get out and move. They need to understand that It’s not the end of the world.

There is hope, you will not die tomorrow. You go on with your life and do the best you can.

By living alone, you get used to a routine. I have a checklist on the door: keys, money, credit card, glasses … everything I need.

I have an application for the bus, so I know the schedules.

I have a set routine, but anyway it I write everything.

Of all the things you can’t remember, you need to make lists and you should be encouraged to look at those lists as well.

My main advice for people who have been recently diagnosed is that don’t live your life in fear. They do not sit on the sofa to vegetate.

Support from other people with dementia is very important, because we are the only ones who can truly empathize with what it is like to truly live with dementia.

Join groups, talk to others, learn from them, listen to them, and for years to come, you will teach those who have been diagnosed what you have learned, because you are the best teacher of what it is to live with dementia.


“Ask for help”

Christine

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“You have to take care of yourself too,” says Christine.

Christine withdeparture from her husband Gilly, who has dementia.

When we got the final diagnosis, no one told me which parts of Gilly’s brain were affected, until about three years later.

So he had no idea why Gilly was so angry and why he was having a hard time making decisions.

He used to be very affectionate and he wasn’t anymore, he did not hold my hand, there was no empathy.

Then we saw a psychiatrist and he explained to me that the sections of the brain where brain cells had died were in the parts that affected decision-making and empathy.

It was as if someone had shed light on our lives, I wish they had told me sooner.

If I had advice to other caregivers, I would tell them to find out what services are in your area and take advantage of them; that they register in all.

Filln their lives of positive things: get a good group of friends around you that you can lean on; not everyone can cope with dementia.

And don’t be afraid to ask for help. I wasn’t very good at asking for help but you have to take care of yourself too, because if you don’t, who will take care of the person you love and care for?


“Make your life easier”

Marion

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Marion: “Having the doors painted yellow helps me know where I am.”

Marion has posterior cortical atrophy, which can occur as a consequence of Alzheimer’s or other dementias and neurological diseases. Common symptoms include difficulty reading, calculating distances, and recognizing familiar objects and faces.

My dementia has a funny name, but we call it PCA [atrofia cortical posterior].

It affects my vision and my spatial awareness.

I have the door frames painted yellow, and that helps me know where I am.

Before, everything was painted white, and if everything is white I don’t know where the door ends and the wall begins.

The yellow color stands out a lot.

This allows me to stay at home and be independent, which is what I really want to do.


These testimonies were taken from the BBC Two documentary series Dementia & Us (“Dementia and us”), which follows four people with dementia and their relatives over the course of two full years, exploring what it is like to live with the condition.

Some contributors asked that don’t be made public their last names.


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