戴 in Kyoto, Japan

members and many others with dementia had a very positive time in Kyoto for the ADI 32nd conference recently. We all  worked hard to ensure ALL people with dementia AND their families in ALL countries get better support, and 戴 provided a platform via its workshop for many to have the chance to speak, who were not on the program.

与往常一样,被诊断患有任何类型的痴呆症或为患有痴呆症的人提供支持的深刻纽带使人们以难以描述的方式聚集在一起。就像陷入爱与深度理解的泡沫中一样,其他人无法完全理解,尽管作为个人,我们有时会有意见分歧,但我们都面临着同样的事情。即使没有痴呆症,我们都会丧命,所以我们一定会更好地继续前进并共同努力。

One of the valuable lessons 戴 is learning, is that when a member passes on, or deteriorates to the point of not being able to be an active member, or moves on to do their own thing, we have many others willing to take on roles to support the global community of people with dementia and our local, national and global advocacy efforts. Sadly, because there is a new person being diagnosed with dementia  somewhere in the world every 3.2 seconds, this will always be the case!

戴’的车间出席了280多人,约有13个代表6或7个国家的痴呆症患者参加了此次活动。当他们都坐在舞台上时,一件事就变得很清楚,那就是没人能分辨出我们所诊断的痴呆症患者或我们的护理伴侣之间的区别。当每个人或每个夫妻讲述他们的故事时,它强调的其他事情是,痴呆症对每个人的影响都不同,一个人的美好生活与另一个人不同。已故的汤姆·基特伍德教授汤姆·基特伍德(Tom Kitwood)在以人为本的护理方面说话是正确的,尽管这在护理环境中通常仍然是口头禅。车间面板Q&会议也很有趣。

我们在会议上收到的非正式反馈是我们的研讨会,第二天由日本痴呆症工作组主持,我认为他们可能有300多人参加,是会议的两次最佳会议。我们很高兴看到刚刚发送给代表的ADI调查的正式反馈。

We have no idea how to help 50 million people, but ONE step, ONE small action, EVERY day, EVERY week, EVERY month, one year at a time is what individuals with dementia, Working groups of people with dementia, Advocacy organisations, and 戴 are all trying to do. Together, we are so much stronger, and the collective voices of people living with a diagnosis of dementia have also become louder, and perhaps much more demanding than ever before.

The  conference in Japan was made inspirational by the sheer volume of people with dementia, and the energy and charisma of the members of the The Japan Dementia Working Group. Their friendship and hospitality was incredible, a was that of their supporters.  They are also wanting to join 戴, collaborate with us, and work on the global human rights, as well as human rights in Japan.

After the conference ended, 戴 also went to Osaka, and Christine Bryden, James McKillop, and I, and others, were there as part of a panel discussing dementia, and being filmed to raise awareness in Japan. Christine gave a keynote speech of what she has seen in her 22 years of living with dementia, and the changes in Japan since her first visit there. Christine started the advocacy work in Japan, and people with dementia are definitely running with their own advocacy efforts now. It is incredible to see the ripple effect now of the work of so many people, started by a few long before many of us were diagnosed or knew anything about dementia.

戴 thanks the early advocates, as without them standing up and demanding a voice and a seat at the table, we would not be where we are today.

As I wrote on Facebook after the conference, one young woman from Indonesia who was at the ADI conference told mentioned to me and John Sandblom (and his wife Cindy, her first time to an ADI conference) that is was because of meeting and listening to us and our speeches last year in Budapest, that she has decided to set up a global group for YOUNG carers. WOW, how exciting is that! 戴 is going to work with her, to support that effort. This has been a dream of many members at 戴 who live with YOD, and have seen our children face with with us, with little or no support.

There is much more to report, especially on human rights, but also we will share many of the presentations given by people with dementia in Kyoto once we have had some time to format them, including the 戴 workshop, as well as adding a photo collage of our time together.

非常感谢日本人民的陪伴,热情和爱心,以及对我们的非常关心和支持。我们中的许多人与你们所有人一起遗忘了我们的一部分。
最后,提醒 注册我们的下一次网络研讨会 与Rhonda Nay一起 性,死亡和痴呆…这是您不会想念的。