Another year has passed and what a year it has been! More and more people with dementia are being recognized and helped in communities all over the world.
Many of you have been out there presenting at conferences, speaking to the media and spreading the word that there is indeed life after a diagnosis of dementia. Others have been attending support groups and have been active in local communities raising awareness about Alzheimer’s Disease and related dementias. Keep up the good work!
Our website gets numerous hits every day from every corner of the earth. Innumerable websites have linked the DASNI website to theirs. A ripple effect is being seen.
My own activities this year have included giving a plenary presentation entitled Taking an Active Part in Decisions Affecting my Later Life at the Alzheimer’s Europe conference in Prague. I also gave this same talk in a workshop at the ADI 2004 conference in Kyoto Japan. I attended the “A Changing Melody” conference in Toronto, Canada a one day event for people with dementia and partners in care and care-professionals. DASNI was a co-host. I was honored to be able to chair this event as it was the first of its kind in Canada. We are now in the midst of planning a second conference for the November 2005. I have worked on the Advocacy Committee for the Alzheimer Society of British Columbia and have participated in several sociological research studies about people with dementia.
I wish you all a healthy year to come. Keep on keeping on!!
2004 was my second term to serve as Co Vice-President with Carole Mulliken. During this term I have spent many days and hours serving as a Chat Moderator during hosted chat sessions. I am also responsible for approving and denying new members and sending out a welcome letter as a part of our community for DASNI. I also work on tracking members when they have been absent for a period of time and following up with their membership.
I also attended our DASNI Retreat that was held in Oklahoma in November and met up with many new faces that I had met from chat.
I am currently working with our local Chapter as a phone buddy to other people that have been diagnosed with dementia.
I also stay busy with my web page where I keep my daily journal. My site often attracts newly diagnosed people and with correspondence, I invite them to DASNI.
This year I:
The first part of the year I stayed very active with my local Alzheimer support group. We went to the State Capital in Jefferson City to speak to our Representatives about issues of dealing with Early Onset Alzheimer's in March.
Then with the kick off of Young Hope being published, much publicity began to occur with Magazine interviews and Newspaper interviews which are still on going about the book and the disease itself.
Late July we were apart of the Alzheimer booth through our Chapter that was set up at the fairgrounds for 10 days. Having the opportunity to share our stories and educate others about the Early Onset of the disease which was a great honor. I was also a part of the Memory Walk in sharing and testifying about EOAD as well.
I also became very active in hosting chats, both for DASNI and The Gathering Place and was given the opportunity to be able to share both sides of the disease.
I believe in September I became a part of a planning committee helping one of our Vice-Presidents, Carole Mulliken plan for a conference in Checotah, Oklahoma. That was a very educational as well as fulfilling experience. The moments that were shared in bonding friendships together during that time is a moment that I hope holds with us all for a very long time.
November, I began and completed the writing of a children's book about Early Onset Alzheimer's with the help of our 10 year old son. It should be published Late Spring or Early Summer 2005.
I became a part of many foundations and organizations in promoting Early Alzheimer's Disease such as The Leeza Gibbon's Foundation, The National Alzheimer Library in Chicago and The Department of Aging in Washington.
I also as far as my duties with DASNI, kept the minutes for most meeting and helped to prepare agenda's for future meetings.
The outlook for this year is much more promising personally as well as professionally.
12/31/2004 Through 3/12/2005
BALANCE ON RECORD 12/31/2004 $398.51 USD
12/31/2004 Dividend 0.16
1/31/2005 Dividend 0.04
TOTAL DEPOSIT 0.20
BALANCE IN ACCOUNT AS OF MARCH 2005 $398.71 USD
I have been involved in many things this year.
Much of what I have done has been in conjunction with our local Alzheimer’s Association who have been very helpful and are very interested and supportive of what I am trying to do with DASNI. I would add here that they have allowed copy all the fact sheets and brochures I have used for the last 6 months at the centre without cost and Alzheimer’s Australia are doing thesame with printing the DASNI fact sheets to go into the delegate’s packs for the Australian Conference.
I have spoken at 7 public forums, presented 3 hospital in-services.
Spoken to numerous special interest groups i.e. local Seniors group and ‘over 50’s club’.
I have done 4 radio and 3 newspaper interviews as well as writing articles to the local paper and the State Alzheimer’s magazine.
I have been involved with the making of a teaching DVD, which we hope to release in the next few months, aimed at training people caring for people with dementia in an acute care or residential setting.
I have placed DASNI brochures in every Drs. Surgery in the region (47 surgeries) as well I have given each doctor a fact sheet. I have been disappointed with the lack of response from all this but keep on hoping!
I have co-ordinated the quilts which have involved folks from Scotland, England, France, New Zealand, Brazil, West Indies, Canada, USA, and Australia. The first quilt is completed and will be raffled at the Alzheimer’s Australia conference in May. The second quilt has the squares joined together waiting to be backed and stippled. This will probably be completed in about 2 months. The directors will have to decide where to sell/dispose of this quilt.
I am currently preparing to speak at the Australian Conference in May. The topic is Quality dementia care for people with younger onset dementia.
I am also preparing to speak at the launch of the DVD.
I have been appointed to the rural client advisory committee of the Alzheimer’s Australia W.A. board.
Finally, Graham and I are commencing a ‘Life group’ through our local church called Living with Dementia God’s Way. This will be a support group for folks with dementia and those caring for them.
I was on both the fundraising and publicity committees, chairing the publicity but due to lack of support both of these have ceased to function this year.
We will, however, have the funds from the quilts to help with the financial needs of the group.
Published Author "JUST LOVE ME" My Life Turned Upside-down by Alzheimer's which continuues to help others.
President and founder of Alzheimer's Awareness and Prevention Hawaii, a frequent lecturer lending a helping hand to both early diagnosed, carepartners and the general public with her vast knowledge and experience and her extensive first-hand education; holds meetings and 4 times per month speaks for groups from 300 to as small as 10 if requested.
Member of the Board of Directors of DASNI, Internationally the largest group for persons with dementia, ages beginning in the 30"s and loyal supporters. She prints handouts by the hundreds at her own expense for both businesses.
Member of Alzheimer's International since 2000, in contact personally with 16 Alzheimer's Groups Internationally.
Represented the U.S. in Barcelona, Spain at the International Alzheimer's Convention 2002.
International speaker, recently completing 31 lectures in 16 cities in Western U.S. and Canada.
Contunued involvement in familial cell research at the University of Indiana, beginning in 1985 with her mother's diagnosis and 17-year struggle with AD. The family can add many years to her problems before diagnosis and so can Jeanne.
Attended many Conferences, 2001 in Montana, Hawaii, Oregon Washington State and recently 2004 in Oklahoma. On the Internet and in person she helped change the views of the old stigmas of Dementia. She wrote articles for newspapers and other AD Associations, TV appearences and Radio interviews and has had 5 booths for dementias 2003 and 2004 in senior fairs.
This was put together by myself and a friend for my new business flyer this year. Hope it will suffice. Each year holds onto what has been done and adds to the next year. DASNI remains to be the hold in my life and nothing comes before my loyality to it. It only needed to have some help here in Hawaii and at the time no arms were allowed. But believe me DASNI has brought me from the depths of depression and has almost daily given me the courage to shout to anyone who will listen"we are intellegent beings not victims." DASNI is included and information is passed at every lecture. Q and A always include DASNI. I feel my business is simply a way of waking up Hawaii and I have just put a small dent in only one island. I could not have done it without all of you and the enlightenment DASNI has brought me.
My thanks go out to all the member new and old who are doing their part be it just listening and feeling better to helping others to the big stuff. Think Globally and act Locally.
Chat Host Report, February 2005
Chat numbers have seen the usual ups and downs over the past year – ranging from 0 to 16 people attending. About 8 – 10 are regular attendees i.e. most days a week.
Structured topic chats such as those hosted by Ben and guests Dr. Mitchell and David Shrenk have been popular and well attended.
We have been experiencing problems with the chat site being inaccessible to some or even all members – particularly on USA weekends, but other times too. This has been taken up with the site ”owner” who has often been able to rectify the problem for a while. It is important that anyone experiencing problems accessing chat let me know so I can take it up with the site.
We have been particularly well served by the volunteer Hosts but as in any organisation this load is being carried by too few – thank you all who do help. Those who come regularly to chat do not need a Host and seem to ‘self-host’ quite effectively. However we do need a host to help the new members coming in to settle down – please assist where you can – if elected to this responsibility, I will be calling for new people to fill in the roster.
I am on the publicity committee and distributed brochures to local businesses and doctors offices. I host early chat once a week and talk to anyone who is willing to listen about the importance of early diagnosis in all dementias. I have enjoyed the privilege being a board member.
DASNI Yearly report – 2004 (International Liaison)
During the year I was pleased to give several presentations, the most important being:
* II Fórum de Geriatria e Gerontologia do Norte de Minas – September 2004
* Palestras p/familiares e cuidadores Hospital Mater Dei, BH – Sept. 2004
* VI Fórum - “Demência” - Hospital Mater Dei, B.H. - October 2004 (at which my presentation was in the form of a letter from a Person with Dementia)
* ABACE (Retired employees Ass. - Banco Central) – Brasília. November 2004.
During all my presentations I emphasized Person Centred Care and talked about DASNI.
I run three regular monthly Carer Support Meetings – each in a different area of town so attending various socio-economic groups. These meetings began in 1989.
Since 1996 I have been running a 20 hour Training Course open to all those living or working with persons with dementia. During this the participants now become familiar with the “DASNI effect”.
During 2004 plans were made to start up a support group for persons with dementia early in 2005 which we have done. Due to the fact that very few people are given their diagnosis early enough we still have only three people.
I was able to get to Scotland in July 2004 for “New approaches to Dementia” - a one week intensive course at the University of Stirling Dementia Services during which I was able to explain DASNI to the 50 participants from various European countries.
During 2004 I was invited to do three important TV interviews and one radio interview.
I answered many E-mails sent from the DASNI website.