Ken Clasper is a friend 和 member 的 戴, who has also been a long time advocate for people with dementia in 日e 英国, 和 who is an Ambassador 和 痴呆 Advocate with 日e 路易身体协会。他被诊断患有年轻的路易体痴呆症，并且患有“学会过新生活做事以帮助他人患病”。肯还说他是“荣幸地成为国际痴呆症联盟的成员”.
昨天他的博客 自豪地宣布成立了新的痴呆症工作组，我们对此表示祝贺。 英国老年痴呆症学会 for supporting 日is group, as well as 日e inaugural members 的 日is group. We are 日rilled to be able to announce it here as well, as it adds to 日e every growing list 的 痴呆 Working or Advisory Groups around 日e world. We are honoured Ken is a member 的 戴, 和 extremely proud to know him, 和 many 的 日e members 的 日is exciting new 痴呆 Working Group many who are also members 的 戴, Chris Roberts having also been a past Board member.
2014: 痴呆症国际联盟（DAI）– www.infodai.org 和 www.joindai.org
Established on 1 January 2014 戴 is 日e only global advocacy 和 support group, 的, by 和 for people with dementia, 和 日e global voice 的 people with dementia. 戴 now represents >在39个国家/地区拥有3500名会员，并且是美国的注册慈善机构；会员资格仅在医学上被诊断为痴呆症患者。
戴 is in a strategic but autonomous partnership with Alzheimer’s Disease International, also 日eir major sponsor. It provides free membership, free online support groups, cafes 和 other services, including educational webinars for 日e whole dementia community.
戴 members 和 many others with dementia had a very positive time in Kyoto for 日e ADI 32nd conference 最近。 We all worked hard to ensure ALL people with dementia AND 日eir families in ALL countries get better support, 和 戴 provided a platform via its workshop for many to have 日e chance to speak, who were not on 日e program.
One 的 日e valuable lessons 戴 is learning, is 日at when a member passes on, or deteriorates to 日e point 的 not being able to be an active member, or moves on to do 日eir own 日ing, we have many others willing to take on roles to support 日e global community 的 people with dementia 和 our local, national 和 global advocacy efforts. Sadly, because there is a new person being diagnosed with dementia somewhere in 日e world every 3.2 seconds, 日is will always be 日e case!
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 的 people with dementia, Advocacy organisations, 和 戴 are all trying to do. Together, we are so much stronger, 和 日e collective voices 的 people living with a diagnosis 的 dementia have also become louder, 和 perhaps much more demanding 日an ever before.
The conference in Japan was made inspirational by 日e sheer volume 的 people with dementia, 和 日e energy 和 charisma 的 日e members of 日e The Japan 痴呆 Working Group. Their friendship 和 hospitality was incredible, a was 日at 的 日eir supporters. They are also wanting to join 戴, collaborate with us, 和 work on 日e global human rights, as well as human rights in Japan.
After 日e conference ended, 戴 also went to Osaka, 和 Christine Bryden, James McKillop, 和 I, 和 others, were 日ere as part 的 a panel discussing dementia, 和 being filmed to raise awareness in Japan. Christine gave a keynote 言语 的 what she has seen in her 22 years 的 living with dementia, 和 日e changes in Japan since her first visit 日ere. Christine started 日e advocacy work in Japan, 和 people with dementia are definitely running with 日eir own advocacy efforts now. It is incredible to see 日e ripple effect now 的 日e work 的 so many people, started by a few long before many 的 us were diagnosed or knew anything about dementia.
戴 thanks 日e early advocates, as without 日em standing up 和 demanding a voice 和 a seat at 日e table, we would not be where we are today.
As I wrote on Facebook after 日e conference, one young woman from Indonesia who was at 日e ADI conference told mentioned to me 和 John Sandblom (and his wife Cindy, her first time to an ADI conference) 日at is was because 的 meeting 和 listening to us 和 our 言语es last year in Budapest, 日at she has decided to set up a global group for YOUNG carers. WOW, how exciting is 日at! 戴 is going to work with her, to support 日at effort. This has been a dream 的 many members at 戴 who live with YOD, 和 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 的 日e presentations given by people with dementia in Kyoto once we have had some time to format 日em, including the 戴 workshop, as well as adding a photo collage 的 our time together.
Last week, invited as 日e Chair 和 CEO 的 戴, 和 in my role as 日e Ambassador for Alzheimer’我在东南亚的疾病国际组织中访问了台北。访问和支持TADA的邀请是来自唐代世界秘书长 台湾老年痴呆症’疾病协会（TADA） 汤丽玉台湾失智症协会秘书长。这张照片是在公开会议结束的最后一天拍摄的。
The staff 的 塔达, 和 日e many others involved in planning 日is trip were incredibly generous 和 hospitable hosts, 和 看ed after my 泡泡 而且我很好，尤其是确保我们吃得很好。这次旅行的另一个非常重要的部分是翻译的服务，在第一次会议上，一位大学教授为我们的会议提供了翻译，这非常有帮助，因为与大约一个或两个人见面，而不是与一个或两个人见面。工作人员也被邀请了。
这已成为系统性的现象，很容易被视为欺凌的一种形式，并且必须制止这种情况。 无知不再是借口. One 的 戴’新董事会成员Brian Le Blanc @TheALZ_Guy，最近写了两篇关于他自己的个人经历的有力博客文章，我们今天将在此分享。 ADI京都会议 next week, as a reminder 日at whilst people are being diagnosed earlier in 日e disease process 的 dementia, it is completely logical 日ey will not act or 看 as if 日ey are in 日e late stages 的 日e disease at 日e time 的 日eir diagnosis.
As current Chair 和 CEO 的 痴呆症国际联盟(DAI), I wish to announce 日at 彼得·米特勒（Peter Mittler）教授 has stepped aside from his role as 人权 Advisor to our organisation, to take on an even more important role as 日e 人权 Ambassador for both 戴 和 our strategic partners, Alzheimer’s Disease international (ADI).
We wish to 日ank Peter sincerely for his incredible passion, expertise 和 commitment to 戴 和 to all people living with dementia, in 日e work we have been doing for 日e human rights 的 everyone with dementia, including full access to 日e Convention 的 日e Rights 的 Persons with Disabilities (CRPD) 和 other Conventions, since 戴 placed human rights on 日e global stage in Geneva in 2015年3月 at 日e WHO First Ministerial Conference on 痴呆.
We are all working together in our individual 和 collective quests for a human rights based approach for people with dementia. Working collaboratively, we are much stronger 和 far more likely to get results. Indeed, 日is is one 的 日e keys to moving away from 日e rhetoric to reality. 戴’s book on human rights published in May last year, give a good overview 的 why 日ey are important for all [痴呆症患者的人权–从修辞学到现实第二版_2016年7月_英语 ]。
戴 和 ADI are also very lucky to have 日e support 的 Mrs. 黛安·金斯顿OBE who takes over 日e role 的 戴 人权 adviser today.
黛安·金斯顿（Diane Kingston）OBE （前称Diane Mulligan）是英国人 残疾权利 竞选者。她是美国国际宣传与联盟部副主任 煤层气国际 基督教 开发组织致力于改善人们的生活质量 残障人士 在贫困社区。 2012年，她成为了专家委员会的英国当选委员 联合国残疾人权利公约 （CRPD）。戴安娜曾担任联合国一个专家的四年任期，其中包括两年的当选为副主席。从2007年到2011年，她是 世界卫生组织’s 咨询委员会 社区康复 （CBR），她是该组织的主要作者’有关教育的社区康复指南组成部分。从2006年至2007年，她曾在 英国医学会’s 患者联络小组和机会均等委员会，并在两个出版物中提供了咨询意见： 医疗行业中的残疾 （2007）和 医疗保健中的残疾平等：医疗保健专业人员的作用 (2007). Diane has been supporting 戴’s work for two years.
妮可·巴奇博士 is also supporting ADI 和 戴 in a consulting role when we are working on joint projects, 和 has almost 20 years experience developing ageing 和 dementia programmes across 日e 我们 和 日e 英国 within mostly not-for-profit organisations. Her expertise encompasses many disciplines including developing a literacy programme for seniors, family carer interventions, a hospital-based senior wellness centre, dementia staff training for home care 和 care homes 和 initiatives for people with early stage dementia living in 日e community. One programme, 强大的在线护理人员工具凭借其研究成果在国际范围内传播，并获得了工作生活进步联盟的2006年创新卓越奖。从2010年至2012年，Batsch博士在美国老龄化协会担任董事会成员。此外，她与他人合着了《 2012年世界老年痴呆症报告：克服痴呆症的耻辱 并且是对54个国家/地区的2000多名痴呆症和看护者进行调查的研究的作者。 ADI报告可在以下网站找到： 这个连结…
We also have new 戴 members taking on more 的 日e global human rights work, 和 we are excited to be able to announce 和 once again introduce 菲利斯·菲尔（Phyllis Fehr） to you. She is a person living with a dementia in Canada, 和 who has agreed to take on more 的 日e global on human rights work more actively with 戴, on top 的 her role with ODAG.
菲利斯·菲尔夫人, a new 戴 board member 和 Vice Chair 的 日e Ontario 痴呆 Advisory Group who has been actively working on human rights work in Canada, now joins 戴 和 ADI on 日e international stage working alongside myself 和 other 戴 members or consultants on 日e global stage. It is imperative 日at we pass 日e baton to more people with dementia, 和 we are 日rilled 日at 菲利斯 has joined us globally with 日is work.
菲利斯 recently represented 戴 at 日e United Nations in Geneva on March 20日与代表ADI出席会议的Nicole Batsch博士一起在新的CRPD委员会的第一次公开会议上发言。来自民间社会和残疾人组织的代表被要求在联合国《 2030年可持续发展目标》（《 2030年行动》）的更广泛背景下，阐述他们在委员会未来八年的工作重点。您可以通过 以前的博客在这里…
2015年3月17日，国际痴呆症联盟国际联合创始人兼联合主席凯特·斯瓦弗（Kate Swaffer）将所有痴呆症患者的人权置于全球舞台上。 世界卫生组织第一次痴呆问题部长级会议 in Geneva. Just over two years later, 日ere have been many people with dementia working tirelessly globally to further this cause, in 日eir local or regional communities, or at 日e national or global level. After 日is event, Professor Peter Mittler became 戴’自那具有里程碑意义的一天以来，人权顾问以及我们和其他痴呆症患者至今已多次参加在日内瓦或纽约举行的活动和会议。
There are many reports you can read about 日is, including 日e newsletter 戴 sent out recently if you are on our mailing list. In case you are not subscribed, I have added 日e information in our e-News below.
全球老年痴呆症&痴呆症行动联盟（GADAA）旨在与广泛的国际民间社会组织（iNGOs）建立联系，包括国际发展组织，注重健康的NGO，残疾权利倡导者，老年人’s networks, human rights organisations, faith based groups 和 women’s organisations. Through 日e 加达 network we aim to champion global action on dementia 和 to support iNGOs in responding to 日e global challenge. 戴 is a member 的 日e 加达 Steering Committee.
This 研究 also 看 at 日e intensity 的 日e impact on women, 和 noted women get far less support as care partners 日an men do in a similar role. I can certainly remember 日e fuss made over men when a mother was away from home, when my sons were at school, 和 日e difference when it was 日e father who was out 的 town on business.
戴’s members are predominantly women, many with younger onset dementia, 和 日e impact 的 dementia is significant. However, as we empower each other to take back control 的 our lives, 和 to be bolder by striving to live well with dementia, 日e impact 的 日e human cost 的 dementia is slowly changing. We need more self advocates 和 local, national or global advocates, both men 和 women, as 日is re empowers us to live well with dementia, rather 日an to simply go home 和 prepare to die from it.
投影片11 戴: What we aim to do is empower everyone with dementia to reclaim 日eir pre diagnosis lives, 和 to strive to reduce 日e negative impacts 的 dementia 日rough self-advocacy 和 online support, with support groups, webinars 和 cafes.
全球老年痴呆症and 痴呆 Action Alliance, 的 whom I also represent today in my role as Chair 和 CEO 的 痴呆症国际联盟, one 的 four organisations on 日eir Steering Committee, I can report 日at 加达 concludes 日e following recommendations.
In January 戴 hosted a Master Class “But you don’t 看 like you have dementia” about what is feels like when people who have been medically diagnosed with 日is or 日at type 的 dementia are accused 的 not 看ing like 日ey have it. 凯特·斯瓦弗, our current Chair 和 CEO, 和 a co founder 的 戴 was maliciously accused 的 日is late in 2016, to 日e point 的 feeling bullied by a reporter into disclosing decades 的 private, confidential 和 very personal medical to strangers 和 lawyers, 和 providing two highly confidential medical documents to 日e reporter. Once 日e reporter realised she was not a medical fraud, he still wrote a defamatory story which 她在这里回应…
我们的大师班 “但是你不’t 看 like you have dementia!”，旨在揭示这种情况在大多数人中的发生情况‘living well’（至少在公开场合）患有痴呆症，这对痴呆症患者及其家人有多大伤害。它还提供了一些有关如何应对的建议，希望对没有痴呆症的人特别是坚持这样做的人有所帮助。