Updated: Mar 15, 2022
Yes There is life after a dementia diagnosis and it can be quite beautiful! Today more and more people who are living with dementia are making their voices heard. We must listen, rid ourselves of the stigma associated with the labels “Alzheimer’s” and “Dementia” and begin the process of inclusion so that those who have memory loss can remain active members in society and can teach us a few things too!
Vital Human Beings
My first meeting with the idea of inclusion, was over 10 years ago when I read the eye-opening book. “The Myth of Alzheimer’s, what you aren’t being told about today’s most dreaded diagnosis.”
Published in 2008, Dr. Peter J. Whitehouse, gave up on research funds for finding a cure for Alzheimer's when he realized there was no cure and that there was a better way to help those diagnosed with memory loss.
I learned so much from this book, but I was totally blown away by how Whitehouse explains a diagnosis to his clients:
“You have what other people used to call Alzheimer’s Disease… Even though you are aging, you are still a vital human being with cognitive strengths who can contribute to your family and to society and explore your creative potential. Think of your brain as an old book. Even though it may be a bit tattered, a little worn around the edges, it still possesses wisdom, knowledge and value that can be given to others.” 1
Wow – I still am touched every time I read this. Dr. Whitehouse went one step further. Together with his wife, they created The Intergenerational School. At this school volunteers with memory loss participate in the school programs and help young people with their reading. You can peek at the atmosphere of this incredible school here
(2 min) :
And hear (or read) more on this podcast (8 minute listen)
This was really the first time that I began to understand that the most important way we can help people who have been diagnosed with dementia is to help them stay active and be part of the community. Sadly most people living with dementia, as well as their care partners, report how lonely they are since friends and family tend to shy away after a diagnosis of dementia.
The Restaurant of Mistaken Orders
Several years ago we ate at a restaurant called Blackout. You first read your menu and order before going inside. Then you are guided to your seat in a room in total darkness by one of the waiting staff who are all blind. The concept is amazing (and the food delicious.) For a short time we were able to enter the world of the blind. Imagine if there was a similar concept to enter the world of those with memory loss? Well it there is!
In Japan there is a restaurant called The Restaurant of Mistaken Orders where all of the waiting staff are living with dementia. From their English Web Page:
“You may think it’s crazy.
A restaurant that can’t even get your order right.
All of our servers are people living with dementia.
They may, or may not , get your order right.
However, rest assured that even if your order is mistaken,
Everything on our menu is delicious and one of a kind.
This, we guarantee.
Please take 5 minutes and watch how beautifully this concept works and the joy it brings. (Special thanks to my sister for sending me this link!)
It has been many years since I lived in Japan, but I think both the wait staff and the customers are much less reserved than usual for Japan. Interesting that the wait staff with dementia may allow their customers to relax from some of the Japanese social norms.
Please visit the Restaurant of Mistaken Orders’ site. They want to develop similar restaurants around the world. Maybe you know of someone who would be interested in taking on this project! You can also help them by donating.
Farming with Dementia
I’ve worked at the memory wing at the Savion Senior Center for 12 years. The visitors have many wonderful activities that are brought to them to our room. These include exercise, music, art, memory games and even animals they can pet. These activities are important for mental and physical stimulation and allow the visitor to interact socially which is so important for preventing deterioration.
I’ve seen similar activities at day care centers and other senior facilities all around the world, but I never imagined this totally different concept. Instead of spending time in a center participating in activities, a person with dementia could spend their time working! I just learned this week about this innovative care approach called Care Farming. (Thank you, Holly, for sending me the article!) Care farms are special farms which combine care and support for different groups of people with challenges. There are now Care Farms for people who are living with dementia.
The care farm projects began to help farms survive by taking on social projects. Holland and Norway are the front-runners of these projects, but today care farms can be found in other countries as well including Germany, Austria, UK, Japan, South Korea and the USA.
To me the idea is brilliant. People who are living with dementia come to help out on the farm. Depending on their capabilities and what they would like to do, they either work with the animals, help in the fields or do repairs. It allows people to interact and socialize as well as give a respite to the care partner and caregivers.
This video shows both how the farm works and what those living with dementia tell how it allows them to have a purpose.
The Care Farm allows people with dementia to feel needed rather than passively taking part in activities. What a wonderful alternative or addition to day centers.
Closed Villages for People with Dementia Sadly many of the nursing home facilities for people with dementia are more like hospitals than homes. Residents are also very restricted and are lose their sense of independence. They also can't leave the facility which can cause anxiety. In a closed dementia village, residents are free to move around. This allows them more physical movement and independence. Although these villages are not a project of inclusion, but hey are a wonderful alternative for people with more advanced dementia.
In Hogewey, a village in Holland, residents can move around freely. They are supervised by staff trained in working with people who have dementia. These staff members, who dress in plain clothes include the cashiers, waiters and hairdressers. There are also surveillance cameras to keep the residents safe. There is only one exit out of the village which is very well monitored 24/7. How does living in these villages affect the residents with dementia? Besides getting more physical exercise according to this Atlantic article: "They require fewer medications, eat better, live longer, and appear more joyful than those in standard elderly-care facilities."
These closed communities can give people with dementia a sense of normalcy and routine. These villages are still in the experimental stage but seem to be having very positive results on the residents. The newest village is in Southern France. You can take a peek here: (1 1/2 min.) :
These village certainly offer a refreshing alternative to nursing homes as we know them and can give residents a sense of independence and dignity. I hope we will be seeing many more of them all over the world.
One of the most important things we can do to help someone living with dementia, is to find a way to help them feel useful and that they are contributing to society. This helps a person remain physically and mentally active which can delay deterioration. Whether it is at a school, a restaurant or a farm being able to work allows people living with dementia to continue to contribute to society. It also allows them to remain active and socialize. These projects are important, because we need to allow people who have memory loss to remain important members of our communities. Everyone can contribute and belong to a community. It is our job to make sure they are accepted.
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Our next free webinar is on March 23rd
When Memory Loss Leads to Aggressive Behavior
1Page 10, The Myth of Alzheimer's: What You Aren't Being Told About Today's Most dreaded diagnosis. By Peter J. Whitehouse, M.D., Daniel George, M.Sc. 2008 St. Martin’s Griffin, New York