A few weeks ago, I did a week of “prao” at my mom’s office. “Prao” means internship for Swedish middle- and high-school students. My mom and her boss, Karin Lind Mörnesten, gave me a chance to intern at Swedish Care International for a week. I was a bit nervous about the whole set-up – putting on slacks and a collared shirt, working alongside my mom all day, and I had no idea what the company did except that they work with dementia disease. But I was ready to help out with whatever they needed to get done; make coffee, run errands, input data, and organize Swedish “fika” (coffee break) for everyone at the office. What I didn’t expect was how much I would learn about dementia, and that I would be able to help my grandfather/Yeye (in Chinese) deal with his emotions about a diagnosis within our family.

Did you know that there are about 50 million people today with dementia today? And a lot of them aren’t properly diagnosed? What is really sad is that a lot of us still believe that losing our memory is a normal part of ageing. It totally isn’t. Have you seen Alzheimer’s Research UK’s commercial with Bryan Cranston and his analogy of the brain as an orange? It is unfortunate how dementia wreaks havoc on our brain’s ability to function properly.

Bryan Cranston for Alzheimer’s Research UK

The real learning came when I had the chance to test SCI’s eLearning courses and smartphone apps, including Memory Box, Dementia Support and Elderly Care. There was a lot of information available, but I think the most interesting parts were about communicating with a dementia-diagnosed person. They were practical and helpful, and I will always remember the information because it was easy to understand. It also allowed me to help my Yeye, who is currently living in Canada, which felt really great. It isn’t often that I can help him, but I know he has been feeling frustrated lately communicating with his sister who lives in Taiwan. She has dementia and is currently in the middle stage of Alzheimer’s disease.

Here’s what I learnt and suggested to Yeye:

ACCEPTANCE

According to Alzheimer’s Association,

“The sooner you are able to accept the diagnosis,

the better suited you will be to help the person living with dementia

move closer to acceptance too.”

Yeye said that he felt really frustrated and sad rehashing the same explanations and clarifications with his sister during their long-distance phone calls. Previously the calls were regularly scheduled, but now she was reaching out to him all hours of the day and night with questions, accusations and sometimes even criticism.

I learnt at SCI that dementia is a noncommunicable disease (NCD). This means that it is chronic, long-term in nature, non-infectious and non-transmissible. I told Yeye that Great Auntie might still look the same, but that Alzheimer’s disease is changing her. The disease has changed her brain, so we have to accept the illness just like we’d accept her if she was in a wheelchair. And we definitely should not stress her out or express frustration when she gets things a bit confused. Pressuring a person with dementia is not recommended because you can make her symptoms worse.

In the courses I took at Swedish Care International, there were a lot of good ideas about communicating around the confusion. It isn’t fair to judge a person with dementia so harshly. Yeye had to be reminded that his sister was reaching out to him because she needed his help, and that he represented safety and security for her. I really hope Yeye remembers this because Great Auntie’s condition could deteriorate really quickly before we know it. And if we can’t accept what is going on today, how can we help her in the next stage of her disease?

RESPECT and DIGNITY

I think technology is great when it comes to keeping all of us connected with each other. There are so many ways we can share our day-to-day lives and keep one another informed of our whereabouts. But I think relying on the telephone, or Skype at best, has not been so easy for Yeye. With Yeye in Canada and Great Auntie in Taiwan, I can imagine he misses the physical closeness, which makes it really important for him to have the right tools for a smooth and enjoyable conversation.

At Silviahemmet, a dementia day-care for about 8-12 people in Drottningholm, Stockholm

Great Auntie is still in there but she needs help, and it’s Yeye’s responsibility to gently coax her to remember and recall good memories. This isn’t going to happen if he gets angry or corrects her continuously. We all need to do our best to have calm, respectful and dignified discussions with Great Auntie. I have read a lot about accepting a person with dementia’s “reality” – and how we must try to accept them and what they believe as real. Even if their reality might be far from factual, it can be very stressful for them to be aggressively corrected. There have been some really interesting articles written about this lately (check this one out in The New Yorker) and I think it must be very difficult for care professionals and families to strike a balance.

“ENJOYING THE MOMENT”

I think we can all benefit from this advice. We often try to do too much in a limited time. It is important to slow down and be in the moment; and to accept that interaction as a gift. I read that for people with a dementia diagnosis, some days can be better than others. They do not know when that is going to happen, and the people around them definitely are not sure about it either. Despite the fact that it cannot be planned or scheduled, we have to accept it in our hearts and cherish it for what it is.

Some older editions of Swedish magazine “Svensk Damtidningen” in the reading room at Silviahemmet

Sadly, Great Auntie’s condition is not likely to improve. There is no cure for Alzheimer’s disease today, so she can’t take medications to make the disease go away. What we can do is to help her stay comfortable, fit, safe and loved. Hopefully, that means she can continue sharing moments of clarity with us for a little while longer. I think “enjoying the moment” is really important because it reminds us to let go of any judgement and look for every little moment of beauty to hold onto.

Moving forward

I hope my Yeye will be able to remember this advice going forward. He, of course, understands why he has to keep calm and respectful, but we need to understand that he too has a right to feel sad and frustrated. Caregiving isn’t an easy experience for anyone – and many of us might find ourselves in a caregiver role in the future. Because the global population is ageing so quickly, dementia is estimated to affect 135 million people by 2050. It is important that people remain calm and respectful when they encounter someone with dementia, because that interaction is going to happen sooner or later for many of us.

One of the eLearning courses I tested at Swedish Care International. You can also check their smartphone applications for free advice

Written by J, son of Sophie Lu-Axelsson, Director of Venture Development at SCI.

This article is also published on our blog, where we bring you facts, tips and tricks for elderly and dementia care. Are you an informal caregiver or someone from the elderly care organisation? There is something for you.

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Swedish Care International (SCI) is an international active organization that develops, packages and exports Swedish elderly and dementia care. Our vision is to better dementia and elderly care by basing it upon the care philosophy of Stiftelsen Silviahemmet. SCI is active throughout various activities and platforms within dementia and elderly care. These areas, individually and together, create good opportunities for extending the provision of adequate care conditions for elderly patients, people with dementia and caregiving relatives around the world.