Kindness

When I was teaching in the 80s until I retired in 2006, at the beginning of each year, I gave my senior students the following assignment to help welcome junior students to the school. Each senior was to find a junior student they did not know, make eye contact and smile. They were to not speak, just make eye contact and smile, every time they saw the junior student.

The senior students were at first uncomfortable but as time went on, they became more relaxed. The junior students, when I talked to them, said that they felt really welcomed at the school and that the senior students were nice and kind. The world’s largest in-depth study into kindness, the Kindness Test, led by Professor Robin Banerjee at the University of Sussex was launched on BBC Radio 4 in 2021. More than 60,000 people from 144 countries chose to take part. Here are some things they learned from the study. We believe the world is not a kind place and the newspapers, TV and Radio news re-enforce this perception every day, but the results of the kindness survey say differently.

1. Kind acts are very common

Three-quarters of people told us they received kindness from close friends or family quite often or nearly all the time. And when we asked about the most recent time someone was kind to them, 16% of people said it was within the last hour and a further 43% said it was within the last day. Whatever people’s age or wherever they lived, kindness was very common.

2. The most common kind of action is to help people when they ask

You don’t have to scale Everest for charity or save someone from a burning building (wonderful as these acts both are) to practise kindness in everyday life and to make a difference to people. Our study shows how everyday most acts of kindness are.

Helping people when they asked was the most commonly reported kindness. Next came doing favours for friends, opening doors to let people through, helping strangers to pick up things they’d dropped, followed by having concerned feelings for people less fortunate than them.

3. Two-thirds of the people think the pandemic has made us kinder

People who took part in The Kindness Test felt that in terms of their lifetimes, levels of kindness had either stayed the same (39%) or declined (36%). Yet the experience during the pandemic seems very different with two-thirds of people saying this unprecedented time made people kinder. Perhaps because it was so difficult, people took more time to look after each other and noticed the small kindnesses that can make such a difference.

Fight the stigma against dementia

 Act. Know what you can do to fight the stigma as advised by the Alzheimer’s Association.

1. Learn the facts about dementia

Talking about dementia lessens our fear and increases understanding. The Alzheimer Society has many resources, both online and in print, that you can use to learn more about dementia.

Once you've learned more about dementia, share your knowledge with others. If you hear something about dementia that is false or misleading, don't be afraid to challenge it.

2. Don’t make assumptions

Dementia is a progressive disease and affects each person differently. A diagnosis doesn’t mean the person will have to stop their daily routine or give up working right away.

If someone says they have been diagnosed with dementia, take them at their word. Even if a person doesn't seem "old" enough, they may have young-onset dementia. If you have a question about dementia, talk to your local Alzheimer’s Society. They can provide answers and direct you to more resources in your community. You can also send your questions to the Alzheimer Society of Canada at info@alzheimer.ca.

3. Use person-centred language

We don’t tolerate racial jokes or jokes about other diseases such as cancer. Yet dementia jokes are common. Don't punch down on people living with dementia by making jokes at their expense.

For a person to live well with dementia, it's important to reinforce their dignity, independence and personhood. Using person-centred language can help you focus on those principles when talking about dementia and the people who live with it.

4. Be a friend

People living with dementia don’t want to lose their friends nor do they want to stop doing the activities they enjoy.

Be supportive. Stay in touch and connected. Social activity helps slow the progression of the disease and lets people with dementia know you care.

5. Hear from the people who experience stigma

The Alzheimer Society works to raise awareness of the realities of dementia, and fight the effects of stigma. However, there is perhaps no better way to know what stigma is than to listen to the people who have experienced it firsthand.

Visit ilivewithdementia.ca  to read the stories of people living with dementia, families and caregivers. Let them help you understand what it's like to live with dementia and face stigma.

6. Test your attitude

Take their quiz on misinformation and stereotypes about dementia. It offers six scenarios that involve dementia and asks how you would handle each situation.

It only takes five to ten minutes. There are no right or wrong answers, but your responses may surprise you!

7. Encourage early diagnosis

People with dementia can live meaningful and productive lives for many years after an early diagnosis. Dementia diagnosed early helps both the person and family members to learn about the disease, set realistic expectations and plan for their future together.

By encouraging early diagnosis, you can help eliminate the stigma around dementia.

8. Support the caregiver

Caregivers need support, too. Knowing more about what they go through is a good start – most caregivers wish that more people understood the realities of caring for someone living with dementia.

If you know someone who is caring for a person living with dementia, it's important that you show understanding and offer help. They will appreciate it.

9. Stay informed

Follow the Alzheimer Society of Canada on Facebook, Twitter and Instagram to get the latest news about dementia and the stories of people who live well with the disease. Sharing these stories can increase awareness of dementia among the people in your social networks.

https://www.facebook.com/AlzheimerCanada 

 Twitter: https://twitter.com/alzcanada

Instagram: https://www.instagram.com/alzheimercanada/ (in English only)

They also encourage you to support their campaigns that raise awareness of the many issues that surround dementia in Canada. Initiatives like the Canadian Charterof Rights for People with Dementia, Dementia-Friendly Canada and Canada's national dementia strategy all strive to reduce stigma against people living with dementia, families and caregivers in Canada.

10. Remember the person inside

Above all, it's important to remember that people living with dementia are still people. Dementia does not change that.

What is always constant is that there are still lives to be lived, dreams to pursue and people to love.

If you have a friend or family member diagnosed with dementia, know that feelings of loss and grief are normal, and will likely grow more intense as the disease progresses.

However, it's possible for the person to live well with dementia, and maintain their quality of life for as long as possible. And you can help that person live well, too.

Check out more reports on dementia to understand the national and global impact of dementia.

How Canadians perceive dementia

I lost two friends to early-onset Alzheimer’s and currently have a friend who has vascular dementia, so it is a concern of mine. Many Canadians acknowledge that people living with dementia regularly experience many forms of stigma.

But there is still more work to be done to reduce stigma. Here are the results from the Alzheimer’s Association's recent Awareness Survey. Unfortunately, research shows that stigma around dementia is rampant in Canada. Here are some selected numbers from their 2017 Awareness survey:

By the numbers

The urgency

·        569,600 The number of Canadians living with dementia in 2020.

·        955,900 The number of Canadians living with dementia in 2030.

·        124,000 The number of Canadians diagnosed with dementia in 2020.

·        61.8% of those living with dementia in 2020 were women.

·        1 in 5 Canadians have experienced caring for someone living with dementia.

The costs

·        Over $10.4 billion The annual cost of dementia to the Canadian economy and healthcare system

·        $359 million The cost to bring a dementia-treating drug from the lab to market.

The stigma

·        56% of Canadians are concerned about being affected by Alzheimer’s disease.4,

·        46% of Canadians admit they would feel ashamed or embarrassed if that they had dementia.

·        87% of caregivers wish that more people understood the realities of caring for someone with dementia.

On acknowledging the existence of stigma and stigmatizing language

·        58% of Canadians believe that people living with dementia are likely to be ignored or dismissed.

·        51% of Canadians admit to using derogatory or stigmatizing language about dementia.

·        30% of Canadians admit to telling dementia-related jokes.

On how stigma can discourage support

·        2 in 3 caregivers find the experience of caring for someone with dementia to be isolating.

·        Only 39% of Canadians would offer support for family or friends who were open about their diagnosis.

·        Only 5% of Canadians admit they would learn more about dementia if someone close to them were diagnosed.

On the effects of self-imposed stigma

·        56% of Canadians are concerned about being affected by Alzheimer’s disease. Of greatest concern is their fear of being a burden to others, losing their independence and the inability to recognize family and friends.

·        50% of Canadians don't believe they could live well with dementia. In fact, 27% believe their life would be over after getting diagnosed.

·        1 in 5 Canadians would avoid seeking help for as long as possible, if they thought they had dementia, perhaps to avoid the associated stigma and embarrassment.

Three key takeaways from the survey results

·        The findings underscore the work we must still do to end stigma once and for all. There is no shame in having dementia.

·        We can’t let negative perceptions stand in the way of people living with dementia and caregivers seeking help and support.

·        Life without discrimination is a right for anyone affected by this disease.

Future planning

 My grandson is a remarkable person. I know that all grandparents say the same or similar things. He does very well at school, and he is one of the top athletes in his country for his age, and if everything goes well will be in the Olympics in 2026 in Italy. I hope that I and his grandmother will be there to see him compete.

My daughter phoned us the other day and informed us that our grandson had been chosen to be in an emerging athlete’s program in his country. She said that means he would now get coaching and help for what he has been doing on his own for a few years. It will be an exciting time for him and for us as we watch to see how he progresses. 

I have to admit that I am excited but a little bit afraid for him. He is sensitive and may feel the pressure of being one of the best brings. My hope is that he understands that all the people who love him expect him to have fun, enjoy himself and create memories that should last him a lifetime. We will do what we can to help support him both emotionally and financially as he moves ahead. 

Being part of the emerging athlete program does not mean that there is any money to help him. There may be in the future if he does well, but until he has proven himself to the powers that be, the money needed for travel and competing is from him and his family. He is lucky that his parents work in the sports area that he is good at and that we can help him with some accommodations when he travels. We are excited by this latest step on his journey and hope that when he is older, he appreciates the sacrifices his parents will be making to help him achieve his dream.