Updated: Jul 4, 2022
First Impressions of the Alzheimer’s Disease International Conference 2022.
I was fortunate to attend the ADI2022 conference this year. It was held in London for those who attended in-person and virtually for those around the world. There were over 1000 delegates.
I still have many more recorded sessions to watch, but I wanted to share some of my first impressions of the conference.
I apology for not listing the speakers and the titles of their presentations. Sadly all the notes I took at the conference were deleted. If someone is interested in more info, I will be happy to search for the info.
Their Voices Are Heard - Listening to Those Living with Dementia
One of the main themes I saw throughout the conference was the inclusion of people living with dementia as part of research and policy decisions.
Today it seems hard to believe that for so many years policy making, implementation and research was done without conferring with those who know best what it is like to live with dementia.
During the past few years people who have young-onset dementia are making their voices heard. It is our responsibility to listen and make changes so those who are living with dementia can live more independently, receive the care they deserve, and remain vital members of society.
Here are some examples.
Terminology For those of us who submitted abstracts for the conference, we were asked to use dementia friendly terms. Words are important. It’s easy to dehumanize when we focus on the disease and not the person.
Giving Advice One presentation was about asking people’s permission to take part in research. For most people reading and signing a form is quite easy, but if you are living with dementia, it can be very difficult to understand several pages of text, especially when it is in an academic format.
By discussing this with people who have dementia, the researchers learned that the form needs to be less wordy, and the order of the statements need to be different. For some, signing their signature may be difficult, so other options may need to be available.
Participation People living with dementia were both speakers and participants in the conference.
Speakers who have dementia shared with us the difficulties they have. One speaker shared that she does not fear dementia, she fears what might happen to her if she needs to go into a care home where she may be abused and not cared for properly. She blames the people, who are in charge of making the decisions that affect her and others, for not moving forward quickly enough to make necessary changes to protect them.
She is so correct. None of us should have to fear for our future.
Seeing Through Their Eyes
This was the most interesting and exciting innovation I saw so far at the ADI 2022 conference.
Kimberley Littlemore makes documentaries. Both of her parents are living with dementia. She wanted to make a series of films to help others understand better what it is like to live with dementia. Her parents agreed to be filmed. The team also had her parents wear glasses that tracked their eye focus. The results, to me, are phenomenal for understanding what life is like for someone living with dementia. This can lead to important changes in design to help people remain independent.
Here are a few of the findings: When Kimberly’s father tried to make tea, his focus was all over the counter due to clutter. It was hard for him to find what he needed. When the clutter was cleared, it was much easier for him to make two cups of tea, but after pouring hot water in the first cup, he poured hot water in the round tea bag container by mistake. This can give us insight into the need to declutter and to think about the containers that are used. Had the tea been in a container that did not resemble a cup, this might not have happened.
In another scene, Kimberly’s father has real difficulty putting on a checkered shirt. When Kimberly gives her father a solid white shirt, he puts it on with little effort. The pattern on the shirt did not allow her father to clearly see the outline of the shirt. Again – a simple change to solid color shirts can allow more independence.
The cameras also showed that while washing dishes, Kimberly’s father stops to go to the toilet. He returns with the toilet brush and uses it to clean the dishes. Here we can learn safety issues that need to be addressed.
After looking up Kimberly’s work on the internet I also learned that one night the film showed that Kimberly’s father could not get back into bed for several hours because he could not recognize the edge of his bed. This can lead to developing different types of sheets that will make it easier to see the bed in the dark. I found Kimberly’s presentation remarkable. By understanding the world of someone living with dementia, we can make the changes to allow people to live more independently. I highly recommend you watch this clip of Kimberly’s work with her parents. Many of the examples I wrote about can be seen in the clip.
Kimberly wanted to make the clips about her parents living with dementia light so that everyone will enjoy watching them. Both of her parents are so loveable, that this was not a difficult task.
iSupport – Caregiver Support I was not aware of this manual/program from WHO (World Health Organization) which is a free training program for carers of people with dementia. Although I would prefer that some Validation methods would be added, I still think this is a wonderful free resource. I suggest everyone take this short 5 module course with exercises to understand what dementia is and how to support caregivers.
The five iSupport modules are listed as: (i) introduction to dementia; (ii) being a caregiver; (iii) caring for me; (iv) providing everyday care; and (v) dealing with behaviour changes.
You can download the manual here:
Or you can do the on-line course version that is available in 4 languages: Spanish, English, French and Portuguese.
OK, I’m not being objective here, but seeing our poster at the conference was, of course, a highlight for me. However, after viewing many of the posters, I do think our poster was one of the better ones at the exhibit.
We presented our pilot program at the Savion Senior Day Care Center that teaches live-in foreign caregivers hand reflexology. It is the first time reflexology was been presented at a conference as a method to connect with people living with dementia. This is our Poster that was presented at #ADI2022
Hands-on Dementia: Reflexology Techniques as a Tool for the Caregivers of Persons Living with Dementia
This was the first time I attended an international conference on dementia. I was very encouraged by the organizers' and speakers’ dedication to making the voices of those living with dementia heard and their dedication to making the necessary changes to improve the lives of those living with dementia around the world.
I hope to listen to more presentations from the ADI2022 conference and will be happy to share more information in coming blogs. ---- If there is a topic you would like us to cover in our blogs, please tell us by commenting below, clicking on contact in the menu or writing to us at firstname.lastname@example.org .
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