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:
-
A move from Albany to Perth.
-
Co-ordinated the DASNI quilts one of which has been raffled and the other is to be raffled at our next National Conference in 2007 unless someone wants to do so at another venue earlier. (I am uncertain of the USD equivalent of the monies raised but Candy could provide that information)
-
Presentation
of a paper at the National Alzheimer’s Australia conference in
Sydney in May.
-
Involvement
as a delegate to the Canberra summit and presentation of the communiqué to
the Senate (federal parliament) in September.
-
Involvement
in the writing of a parallel State communiqué (December & January)
which is at present at the printers and will be delivered
personally to all state parliamentarians in the coming year.
-
A member of the Alzheimer's Australia W.A. Client Advisory Group.
-
Speaking at a number of local conferences
-
Presentation, along with Graham, of a workshop at a Ageing Conference in Perth.
-
Involvement
in the local Living With Memory Loss Support group.
-
Appointed to the reference panel for the Dementia and Memory Community Clinic that is being set up at present in Perth and also as a mobile van to reach country areas.
-
Co-facilitated
the ‘Moving On’ support group in Albany while we were there.
-
Currently
involved with the planning of a new early stage/younger onset group tentatively
called “Exploring Creativity” which is hoped to commence
a pilot program in March/April
-
Attempted
to have Oceania Chat sessions (Initially good but not very
successful since I had time out during moving)
-
Occasionally
hosting chat room for general chat.
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.
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