You got a diagnosis of Alzheimer’s disease.
Your friends find out.
Your friends stop coming around.
People stop asking for your opinion.
You get excluded from conversations.
People talk about you as if you weren’t there.
This is the stigma of living with Alzheimer’s disease or other dementia
The stigma of dementia often comes from a lack of knowledge and understanding of what dementia even is. A lot of people get scared from the stereotypes that a person living with dementia will randomly hit or attack you. A family friend of mine actually said that she wouldn’t go and see one of her very good friends because she was worried that she would get punched or kicked unpredictably.
People living with dementia are still people. Their behaviours and actions can be predicted if you pay attention to mood, surroundings, environment, and life history.
A lot of people too, will “write off” a person with dementia because they feel there is nothing that can be done. There is a lot that can be done. It is true that dementia is progressive and will end in death, but there are lots of things you can do to make the last years of life happy and productive. Just as when someone gets a diagnosis of terminal cancer, you still do things with and for that person.
Others may believe that people living with dementia don’t understand what’s going on around them or what’s being said. This sentiment is also wrong and the line of thinking allows people to treat those living with dementia without dignity and respect. People living with dementia can understand what is happening around them. They pick up on people’s emotions easily and react accordingly. For example, if you are arguing with someone and the mood is very negative, your loved one with dementia may react with anger, sadness, or a want to protect – depending on their personality. One of the easiest ways to influence a person living with dementia into a positive mood, is to generate positive vibes, smile, and laugh.
Also, people with dementia can still contribute in many aspects of life and society. These people have lived. They have years of experience, memories, and lessons learned. Many of our WWII survivors are +85 years, and can pass on incredible teachings that influence politics, business, and how you live your daily life. Talk to a veteran and learn about communities coming together to support each other through the Great Depression, and learn gratitude for what you have as compared to what they had – Freedom and Security for one. They have skills and wit. I knew a man with dementia who handmade acoustic guitars, another who built ships in bottles, and a woman who knitted her entire family’s wardrobe. These dying skills and trades are useful and fun to engage in and it is in our elders and those living with dementia who retains this information. It’s not in a book or on the Internet. It’s in your grandmother and grandfather.
Lastly, dementia is like any other illness or condition. People don’t want to be labeled by it. If you had cancer, do you want to be known and treated as that woman with cancer? Or do you want to be known and treated as Kathy, the wife, mother of 2 boys and 1 girl, a mechanical engineer, and a sister to John and Diane? You’d want to be treated as a human with a present, past, and future life.
There are all these causes of stigma towards dementia out there, but there are 3 simple ways you can stop it, and help your loved one living with dementia to live well.
3 Ways to Combat the Dementia Stigma:
- Stand Up – Don’t put up with comments that distort the image of dementia into a negative light. Learn and inform people of the facts; don’t be afraid to ask questions and learn more.
- Treat with Respect and Dignity – Remember that people living with dementia are people first. They are not defined by the diagnosis. In fact, being treated with disrespect and without dignity can really impact a person’s health and well-being. So much so that symptoms can worsen and progress at a much faster rate. Treat each person how you would want to be treated.
- Continue your relationship – be a good relative/friend and support your loved one. The worst thing for someone living with dementia is for their friends and family to leave as soon as the diagnosis is given.