Research has consistently shown some link between shared genetic history and the development of dementia. [1] But while there is not yet a cure for the memory killer, there are opportunities for people to help move towards one by participating in research. There are a number of studies aimed at analyzing families and getting to the root of the genetic source.

NCRAD Study:

Good if your family has two or more living members with Alzheimer’s disease or symptoms of serious memory loss. See the NCRAD Study Brochure for more information.

• Contact: 1-800-526-2839, alzstudy@iupui.edu

LOAD Study:

Seeking answers and clues in the development late-onset Alzheimer’s, this study is available for a family with two or more living siblings diagnosed with Alzheimer’s after the age of 60 AND ALSO and a third diagnosed with memory loss after 50 OR without symptoms of memory loss over 60 years. View the LOAD Study Brochure to learn more.

• Contact: 1-800-526-2839, alzstudy@iupui.edu

DIAN Network:

You may be eligible for this if you have a biological parent or sibling with Alzheimer’s caused by a known mutation. To find out more see the DIAN Study brochure.

• Contact: DIAN Global Coordinator, 314-286-2683, partner institutions/study sites http://www.dian-info.org/institutions.htm

There are also numerous opportunities for individuals to participate in research, including the AA Genetics Study and ADNI.

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[1] For more information on the genetic links to Dementia, see the following articles: A Genetic GPS for Earlier Diagnosis http://www.alzheimersweekly.com/content/genetic-gps-earlier-diagnosis, Genetic Predisposition for Frontotemporal Dementia http://www.alzheimersweekly.com/content/genetic-predisposition-frontotemporal-dementia, Family History and the Odds of Alzheimer’s http://www.alzheimersweekly.com/content/family-history-and-odds-alzheimers.

The event will feature keynote speaker Lisa Brummel. Lisa is Senior Vice President of HR at Microsoft and co-owner of the Seattle Storm. In 2010 she was named one of the Puget Sound Business Journal’s “Women of Influence.”

Lisa will speak about how Alzheimer’s disease is affecting the baby boomer generation and business and how together we can help change the trajectory and impact of this disease. All proceeds directly benefit the Alzheimer’s Association, Western & Central Washington State Chapter, a registered 501(c)(3) non-profit organization.

This event is complimentary with a suggested donation of $150 per person.

Tuesday, May 17, 2011
Hyatt at Olive 8, Seattle
7:30 AM to 9:00 AM

To reserve your table or seats, contact Karen Aparicio at 206-529-3865 or karen.aparicio@alzwa.org.

 

A new study by the American Navy was found not to have followed proper protocols and best practices for human subject research. The research tested an experimental therapy using antioxidants on people with acquired brain injury.

The Pentagon’s Inspector General found that “management and conduct of the clinical trial were inconsistent with military standards for human subject medical research.” Soldiers deployed in combat environments are at high risk from brain injury as a result of a variety of factors from a roadside bomb to a vehicle collision. However, there are many problems with the review process in military medical research conducted in Iraq.

It is also possible that patients involved with the study in general received substandard care.

Because of the secrecy revolving around military research projects, it is unclear exactly what happened with the patients in the study. However, a brief summary is available.

Read more

Last month the Economic Revenue and Forecast Council (ERFC) presented its economic review to the legislature. Highlights include: 

• Projected General Fund revenue down $778 million (previous quarterly forecast last November)
• Total projected General Fund revenue for the 2011-2013 biennium at $31.9 billion
• A cumulative decline in revenue projections by about $3.4 billion over the course of three quarterly forecasts.
• A $5.1 billion shortfall for the next budget period (based on Governor Gregoire’s figure of $37 billion needed for maintaining state programs at their current level)

Recent geopolitical developments have cast yet another shadow over the economic recovery. The uncertainties around oil prices and the tragedy in Japan are combining with the slow housing market to hold us back.”

In order to find a balanced solution, the government is looking at pension reforms, fund transfers, and employing the rainy day fund. Meanwhile, the House and Senate are busy developing their proposals for closing the gap.

See the full report from the ERFC

Today our team is on the Capitol fighting for health-care and essential services for our seniors. There are two bills currently before the legislature that are key for protecting Washington State seniors who currently live in or who are seeking care in an Adult Family Home.

ESHB 1494 – This would require elder care referral agencies to clearly disclose their fees and terms of service upfront, to check the Adult Family Homes they refer to for quality violations, and to inform clients as to whether they have actually visited the home in person.

SB 5092 / HB 1277 - This calls for more frequent inspections of adult family homes, steeper sanctions for violations, and higher training and safety standards.

People who reach a vulnerable point in their life where they can no longer live independently in their own home need quality choices and options. These two bills will help provide peace of mind so people can successfully stay out of a nursing home and instead live safely in their own community in a home-like setting.

Current movement in the legislature on these issues are a response to the sharp rise in consumer complaints in recent years, as well as an investigative report by the Seattle Times exposing stories of abuse, neglect and exploitation.

Many referral agencies support ESHB 1494. Yet there are big opponents of this bill, including a major player within the industry. Once more, special interests collide with the well-being of our seniors and those in need of supportive services. At the same time, Adult Family Homes are challenging the state government on the increase in the license fee. While tough economic times hurt all businesses, the government’s role in this area should be to continue supporting/promoting access to these critical services, not fronting part of the bill for one particular sector. Last year, Adult Family Homes succeeded in blocking the legislature from taking any action. However, this year we cannot afford to not move forward on these issues.

E-mail your representatives today to ask for their support. Visit the AARP website for a template form you can use to make your voice heard.

Members from the Cascade Park team will be journeying to Olympia on Tuesday April 5th to focus on legislative issues surrounding assisted living. This is crucial as the Legislature still not acted on policy to delay the costly new caregiver training and certification requirements. A delay until 2014 would save over $55 million in the 2011-13 biennial budget and an additional $14.2 million for that fiscal period.

Without this legislation, private pay residents will be the ones to bear the brunt.

A seven percent rate reduction for the state’s Medicaid clients in boarding homes goes into effect on April 1st, and the risk of additional reductions looms large for the upcoming biennium. Washington state budget woes continue to mount – last week it was announced that state revenues are down by nearly $80 million for the 2009-11 biennium and $698 million for the 2011-13 budget period. Simply stated, this means that legislative budget writers will have to close an estimated $5.3 billion hole before adjourning next month. Anti-tax sentiment is strong, so revenue proposals are in short supply. Additional, sweeping program cuts are likely. It is critical that legislators understand that additional Medicaid rate cuts for boarding homes will limit access to the state’s most cost-effective long-term care setting and drive-up costs for private pay residents.

Everyone must work together to preserve affordable, accessible assisted living care. It’s never too late to make your voice heard by calling your legislators. If you will be at the capitol on, let your legislators know that you will be stopping by. They will be on the floor so look for a chance to pull them to the side and share your thoughts

Find your legislators at: http://apps.leg.wa.gov/DistrictFinder/Default.aspx

In an attempt to improve the quality of life for people with dementia, CPS Research, a Glasgow-based medical research company, has been carrying out the clinical trial of a drug containing the sleep hormone melatonin. Researchers hope that this will help in reducing the symptoms associated with the illness.

The trial is part of the Alzheimer’s Disease Project, and scientists are looking to recruit around 50 patients for the six-month long study.

Read more about these developments