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Director's Reports 2005

Lynn Jackson – (Canada)  President

As this will be my last Directors' report as President I would like to take this opportunity to thank everyone who has worked so hard to make DASNI what it is today. We have really made a team effort of it and WOW! look how much we have accomplished!

I am so amazed and proud of all that everyone has done in their own way.

From sitting in front of our computers to going out onto the world stage and giving presentations – we have told the world that Yes – there is life after a diagnosis of dementia. This past year has been especially busy for me. I started the year off by giving a talk at the Alzheimer Society of Canada annual conference in April. The talk was entitled “Think Globally, Act Locally – Putting Words into Action”. This talk was about the creation of DASNI and told of many of our accomplishments to date.

In June I gave a key-note address at the Alzheimer Europe Conference in Killarney Ireland entitled "Promoting a Rights-based Approach to Person-centred Care". There I also co-presented the "Think Globally….." presentation with Peter Ashley.

In September I attended the Alzheimer’s Disease International conference in Istanbul, Turkey where I co-moderated a session and I again gave the "Think Globally….." presentation.

In November I attended the 2nd "A Changing Melody" conference in Toronto. This is a conference for people with dementia and their partners in care. I was on its organizing committee again this year and it more than met our expectations.

I continue to co-facilitate my "real live" early stage support group here in Vancouver. Also, I have started into a new "avenue" of advocacy.  I am pleased to be on the Advisory Committee for the University of British Columbia’s Centre for Research on Personhood in Dementia – a part of the department of Social Work at UBC.  I have also joined the Ethics Advisory Committee for the Deltaview Rehabilitation Centre – the nursing home that I ultimately would like to go into.

Again everyone – keep on keeping on!

Carole Mulliken – (USA) Vice President

This has been an exciting year for DASNI here in the United States as the Alzheimer's Association got a new president and quickly formed a Task Force on Early Stage Issues. I am pleased to report that of the ten individuals with dementia selected to be on the advisory group to the Task Force, four are DASN International members. While each serves as an individual participant, we believe that their continual contact with other pwids at DASNI makes those individual participants better informed about the needs of people with dementia throughout the country.

In addition to working for a new relationship with the Alzheimer's Association, this year I held several conversations with the head of the Alzheimer's Foundation of America. Unlike the Alzheimer's Association, which contributes significant monies to Alzheimer's Research, the Alzheimer's Foundation is a network of organizations that provide direct services to families affected by dementia. I hope by this time next year I will be able to report that DASNI is a member in good standing of that network. I also plan to apply to the foundation for funding for important DASNI needs, both in America and internationally.

I have also introduced DASNI to Project Lifesaver, a nonprofit organization in the US that provides people with dementia with much greater freedom within the community because they fit participants in the program with bracelets that continually broadcast their location by radio waves. When the police are notified that the person is missing, a search ensues. Project Lifesaver has a 100% recovery rate, and their average time in search is a half an hour. The passive "Safe Return" bracelets can only work after someone discovers the person with dementia, and these recovery times are measured in several hours. When the Safe Return bracelets only are used, we often hear that people are discovered only after they have died. I have offered to work with Project Lifesaver here in Missouri to promote the program and increase the number of areas they serve.

As I did last year, I try to develop ways for DASN International to reach out to people with dementia in addition to our Internet activities. I wrote and distributed the first issue of VOICE (my newsletter by, for and about people with dementia), which was distributed at the Early Stage Solutions Summit held in Tulsa, Oklahoma in the spring. It has been made available through the Internet as well, and I provide it to any DASNI member who wants to use it when they speak. Also, I have worked to make and develop relationships with DASNI members (who are within my calling area) as a personal effort to pull DASNI out of cyberspace and put it "on the ground" in the United States. In St. Louis, Charley Schneider and I are working on a new model for pwid support groups which is different from the divided pwids and partners in separate groups model.

This year I continued to introduce new members to the email community as they were approved. In addition, I have provided some DASNI services by telephone, as I believe this additional method is necessary to our further development, at least in the Americas.

Although they must remain confidential, some of the activities I am proudest of were my attempts to pave the way for some individuals relocating, because moves are so difficult for us. I have called the new local chapter of the Alzheimer's Association to make them aware of the new person who will be contacting them, and I have called ahead to discover what programmatic resources might be available to them in the new community. When our computers are down, people with dementia become isolated from DASNI, and I am happy to be able to provide a continuing connection by telephone.

It is exciting to have seen so many new and highly capable members joining this year. This "new blood" has a lot of energy, which should prove to sustain us for many years to come as they begin to participate as DASNI leaders.

If chosen, I would be pleased to serve on the board again.

Mary Lockhart – (USA) Vice President Americas

This year I have worked with the local Alzheimer's Assn. making phone calls to people who don't have computers and giving out my phone number, so they can call me when they want to talk with someone who is dealing with the same things that they are.

On June 10th Dave and I attended the Early-Onset Alzheimer's Assn. Solutions Summit in Tulsa, Oklahoma. Joann Webster gave Heather and me permission to have a DASNI booth. We had many stop by to visit and met some newly diagnosed people.

Each day I check my e-mail to see if new members are wanting to join DASNI and invite them in along with a private welcome letter. I continue to do a daily journal and maintain my web page which has bought in several new DASNI members. I often get e-mail from authors who have visited my web page and because of it I have been featured in several books.

The chat room is still a big hit. I host afternoon chats and on Thursday evening Dr. Mitch is a big hit with his chat on the first Thursday of each month.

Morris Friedell – (USA) Council for the Americas

I've been pretty inactive, I'm happy to retire from the Board, and I'm glad there's fresh blood willing to move DASNI forward. I'm also conscious that, as a global organization, we shouldn't be overweighted with Americans. I don't think we need the "bureaucracy" of regional councils, though.

Mostly my inactivity is due to trying to move on from being a "dementia survivor" and live a full life, as described in last year's Updates that I've posted on my website. It's probably also a little due to further decline--the listserv posts frequently are a blur unless I effortfully study them.

I continue to like the concept for DASNI that Lynn proposed in 2004, that we concentrate on support through the listserv and chat, and be a clearinghouse for advocacy rather than collectively take on big advocacy projects as we did in the past. Do you still feel that way, Lynn?

One reason I'm inactive is because Andrea and I, with about the same level of impairment are such good care-partners.

I do want to continue to participate in DASNI. I'm particularly interested in aggressive rehabilitation (e.g., as in my essay at members.aol.com/morrisff/Vision.html and I'm interested in suicide. These interests aren't really opposite. In my religion it's God's will that one take charge of his/her life, and death is a part of life.

Jeanne Lee – (USA) Council for the Americas

This year as a Director, I fortunately am still able to lecture, think Globally and act Locally.

Much to my surprise in December Leeza Gibbons asked if I would take part in the Memory Wall when it traveled to Portland and other various cities. My family and took part in the 10 day process and were asked to do a documentary video to be used for Leeza's Places around the U.S. to help people understand. It really showed a families' positions on denial, acceptance, struggles, living miles apart, living with two people with familial Alzheimers and the love between family members. They took shots of us at the wall putting up tributes and a round table explaining about how our family is living with the diagnosis. It was a great opportunity to exemplify DASNI and how important it is to a person with dementia, carepartners and interested medical and others.

Earlier in the year I began planning a TV series on public television about our lives at DASNI plus mine in Hawaii.

My Alzheimer's Awareness was the only group in Hawaii to take part in the Memory Testing done Internationally and was able to promote DASNI. Many of the research projects offered DASNI this year were part of my journey.

Chat remains very high in my life and answering letters of welcome and lending helps to new members and or dropins continues to thrill me.. ..Aloha

Charles Schneider – (USA) Council for the Americas

This past year I have had the privilege of attending two series of Project Esteem. I have continued to research all areas of Dementia in the hope of passing on any knowledge learned to the public. I was able to give interviews at a college and to the media. I am in the final stages of publishing the book I wrote and have started a support group for the St. Louis area. I was graciously allowed to be part of an Advisory group of people with early stage Dementia at the National Alz. office in Chicago. I have promoted DASNI in all of my endeavors including my soon to be published book, and have enjoyed my involvement with DASNI. Besides these things, this year I have been seriously injured in a car accident, blown up and burnt in a Propane explosion, and had a very serious bout with Staph Infection, which slowed down my activities considerably, but all in all it was a great year. Thanks for the opportunity to serve.

Shirl Garnett – (Australia) Vice President Oceana

What a year this has been. So much has happened and so much has changed.

The year has included:

Although I feel as if I haven't been as active in the chat rooms and message board this year, the work I have been engaged in fits the criteria of Think globally Act Locally.

It has been a pleasure and a privilege to be a part of the Board of DASNI

James Mckillop (Scotland) Council for Europe

I have been out at meetings and Conferences every week, sometimes 5 days a week, so can't tell them all.

The highlights. I spoke at the first Arab Conference on dementia in Beirut in March last year. I was also at Killarney in Ireland giving a speech and met you and Peter. What an experience. I was at Coventry and Penrith in England to give my main talk and Maureen my wife, gave her talk.

In Scotland the Scottish Executive brought a report on how Social Work should be in the 21st Century. I was part of the carers/user panel and when it was launched to the public and media, I chaired the event.

I have been to the Scottish Parliament several times fighting to improve our lot. The most recent being a petition to persuade MSPs not to stop drugs for all stages of Alzheimers.

The big highlight for me, was the second AGM of the Scottish Working Group. Despite the odds and scepticism, the group is going from strength to strength.

I have been involved with our Peter arranging  the first ever meeting of people with dementia in the UK (England, Ireland, Scotland and Wales) next week. Peter has been a source of strength and an inspiration. Where does he get the energy? With his help I am sure I can cope with the day.

Judy Robbe - Brazil - Council for the Americas

During this year I have continued to voluntarily run three Carer Support Groups with a total average attendance of 100 people monthly.

The non-profit Dementia Training Programme continued for the 9th consecutive year in 2005. This 20 hour course (one 2 hour class a week) which I myself developed and teach, covers day to day aspects of living with dementia. Students are care assistants or women working as maids in the home of someone with dementia, other health-care professionals and sometimes family members. The aim is to educate, reduce the stigma of dementia and promote Person Centered Care.

I was invited to take part in two nation-wide TV shows.

As a volunteer I spoke at four Geriatric Medicine events held this year and gave my talk "When Memory Fails". I always promote DASNI on handouts and encourage my audiences to visit the DASNI website.

I continue to run the 24 hour Alzheimer help-line from my home.