NTG Steering Committee Meeting minutes2/12/2011
Final amendments 2/17/2011
Attending:
MattJanicki()
LarryForce()
NancyJokinen ()
JamesAcquilano ()
LucyEsralew ()
LinNelson ()
RonLucchino ()
JulieMoran ()
KathieBishop ()
SethKeller ()
MaryHogan ()
LeoneMurphy ()
Regrets:
Phil McCallion ()
Barbara Caparulo ()
Brian Chicoine ()
I. Overview
Matt Janicki gave an overviewto the project. He explained that the group has grown with 80 involved individuals signing up to participate. There was some discussion on what the committee’s role should be as the project is evolving. Three work groups have been formulated:
Group C: Community Supports
Group S: Screening
Group H: Health Care
The goal of the project is to improve the quality of life for people being affected by dementia. Matt discussed the new law that President Obama has signed, the “National Alzheimer’s Project Act” (NAPA), which will direct the future care of those with Alzheimer’s, so timing for our contribution is optimum.
It is the NTG’s plan that the three working groups will develop three working documents (white papers) for the conference to be held in St. Paul on 6/6/11
It was decided to have introductions as each group presented their progress.
The Group is trying to work with national organizations such as: A.D.D., Alzheimer’s Association, DDNA, AOTA and the AUCD. After the June Conference, we will try to get the national organizations to buy into the project and hopefully, affect national policy as well. With members from Canada, it is anticipated that the project will affect Canada as well as the USA.
II. Group S – Screening – James Acquilano, Lucy Esralew, Lin Nelson
Theco-leaders of this group held an initial telephone meeting earlier in the month and posted a request to the membership asking for the screening tools that are being used. They have collected 12 so far.
They also asked about current screening practices; who is being seen; why and what’s being done. They have 13 surveys so far. It will become necessary to form a subgroup within the group to review all of the information, evaluate the screening tools and to determine what is best for our population. People have been very generous in sharing research articles. Matt said the National Association of ADD has provided a lot of information. Lucy will collate the research and share the data.
Lin said she is working in California piloting screening measures for those with I.D. and early dementia. She has IRB approval but is waiting until 6/6/11 for further discussion.
III. Group H: Health Care - Ron Lucchino, Julie Moran, Kathie Bishop, Seth Keller
Ron discussed examining the causes of dementia. Staff see things happening but not really sure what it is. He expressed that physicians are not currently trained in this area and need education along the lines of diagnosing accurately.
Julie expressed that she would like to see the group target issues at the caregiver and primary physician level and to actually look at how the diagnosis is made. She re-iterated that many physicians have not had training in this area.
Katie expressed her concern that most health care providers have no experience or training on I.D. and aging. Health Care Providers need to look at underlying conditions that may be causing the decline and loss. Staff need to be trained on how to observe signs and report them to the physician. We also need to consider the sensory processing and environmental impact on the individual;.
Seth discussed his concerns about preventative care, nutrition, exercise and polypharmacy. Direct support staff, especially nurses, need information. He discussed concerns about E.R. visits, hospitalizations and treatment.
IV. Group C: Community Supports - Matt Janicki, Larry Force, Nancy Jokinen
Thirty-one members signed up for Group C. A groupsite.com website was established for the group to communicate and on which to share documents. Questions were posted on the site this week. This group will collect information on the issues that families and organizations are facing. They will focus on how can: 1. Families be enabled and supported; 2. Agencies be supported; and 3. The individual be retained in the community for as long as possible. They are looking for family and agency stories of what they (families and agencies) are facing.
V. Advocacy - Mary Hogan, Leone Murphy
Mary addressed the need to provide access to information to small agencies and service providers. Due to high staff turnover, training and information will need to be revisited on a regular basis, perhaps as an integral part in the new employee training module.
Leone suggested that screenings be done early and routinely before symptoms arise, perhaps as part of the yearly IHP or physical exam. Education and training needs to be directed at families to help them face the situation of their loved one possibly developing Alzheimer’s.
VI. Communication
The members discussed the most efficient ways for us to communicate. GroupSite.com has a listserv to facilitate group wide discussion with its File Cabinet Tool; group-wide email messaging capability; includes password protection and participation by invitation only. If you want to join, email Nancy or Larry who will email you an invitation.
GoToMeeting is an internet product which will enable us to put on webinars and geographically-disbursed trainings.
The group is working on communication and any type of social media that we can integrate should be explored. Larry offered to bring the project to his center and one of his students could develop it further. Whatever form of media is deployed will still need an administrator (media master.) If there is anyone in the group who has the expertise or interest in this, please contact Seth.
VII. Organization of NTG
Seth sees the NTG as an organization that can grow to serve as a resource for the I.D. community.
Matt wants to institutionalize the process and put it into policy and regulation.
VIII. Organization Support
Seth has had conversations with the Arc of US and feels that they will support us and provide trainingopportunities.
Lucy suggested we bring outcomes to people actually practicing in the field.. We need support of the local Arc’s and local Alzheimer’s groups as well. The information hasn’t filtered down yet. We need that grass roots effort to influence policy and proactive.
It is very important that after June 6th we disseminate information and monitor feedback. This needs to be done with local, state and national agencies as well as families. Lucy noted that the U.K. has user friendly brochures and materials.
IX. Website
The NTG started last week and listed a membership sign up page. It can be developed further. It could be a good source for training. We need to decide who should be responsible for putting information on the website and updating it. There was agreement that we should form a committee to explore this. We will ask NTG what should be on the website and who wants to be on the committee.
X. Make-up of Steering Committee
It was generally felt that this meeting went well. It was discussed that the advocates would work with each group (Group C: Community Supports, Group S: Screening, and Group H: Health Care). When anyone registers to participate on the NTG, they need to indicate in which group they want to participate.
XI. St Paul Meeting 6/6/11
We have been given a room to hold our meeting on 6/6/11 that holds about 30 people. We will meet starting in the early am and go until late afternoon. You do not have to register for the conference starting 6/7 to attend the 6/6/11 meeting. We have requested time at the conference to present information on where our group is at that point.
XII. Next Steps
Larry Force noted that the NTG Steering Committee members are spending many volunteer hours on this project. He suggests it would be a smart idea to provide letters of commendation and appreciation for these efforts.
The next teleconference for the steering committee will be 3/12/11 at 10 am. All are invited to contribute to the agenda. Please let Seth have your items.
Respectfully submitted
Leone Murphy