Thursday, September 29, 2011

Federal Advisory Council Holds First Meeting to Forge National Alzheimer's Plan

Federal Advisory Council Holds First Meeting to Forge National Alzheimer's Plan      

  White House

The recently established Advisory Council on Alzheimer's Research, Care, and Services convened for the first time on Tuesday to begin forging a comprehensive national plan to defeat Alzheimer's disease as charged by the National Alzheimer's Disease Project Act.

   Eric J. Hall, AFA's founding president and CEO, traveled to Washington, D.C. for the historic meeting in his role as member of the advisory council. At the meeting, Hall called for swift action on increased funding for Alzheimer's disease, with particular attention on research, clinical care and caregiver support.

   "We must do two very important things, which are to educate the general public about exactly what Alzheimer's disease is, and take into account plans that have already been created in 25 states and in other countries. We cannot waste time by reinventing the wheel," he said.

     At the kick off of the meeting, federal members of the council presented findings of an inventory across all government agencies of activities related to clinical care, long-term care and research. The research highlighted gaps and potential opportunities that will play a role in formulating the national plan. The assessment included specific Alzheimer's disease efforts currently taking place at the National Institutes of Health, the Administration on Aging, and the Centers for Medicare and Medicaid Services.

   U.S. Secretary of the Department of Health and Human Services Kathleen Sebelius is expected to release the first report on a national action plan in December.  

     The advisory council is made up of 15 federal members and 12 non-federal members. It will meet again in January. To view the full list of federal and non federal members of the council, click here http://aspe.hhs.gov/daltcp/napa/#Meetings.

 

 

United Nations Recognizes Alzheimer's Disease as 'Important Cause of Morbidity' Worldwide   

  UN

The General Assembly of the United Nations last week issued a declaration that states, in part, that Assembly members "recognize that mental and neurological disorders, including Alzheimer's disease, are an important cause of morbidity and contribute to the global [non-communicable disease] NCD burden for which there is a need to provide equitable access to effective programmes and health care interventions."  

     Following the historic statement, the Alzheimer's Foundation of America (AFA) applauded the Assembly for its action. "The UN declaration sends a powerful message that Alzheimer's disease is a chronic disease of immense proportion that does not discriminate across geographic boundaries," said Eric J. Hall, AFA's founding president and CEO. "It is invaluable toward lifting Alzheimer's disease to the global platform necessary to attack this worldwide public health crisis, and offers hopes to countless families that this recognition can help advance efforts toward a cure and optimal care in all corners of the globe."

     The formal recognition was an outgrowth of the body's high-level meeting on the prevention and control of non-communicable diseases.

     Hall also praised Representatives Edward J. Markey (D-MA) and Chris Smith (R-NJ), co-chairs of the Bipartisan Congressional Alzheimer's Taskforce, along with 28 other taskforce members, for urging the United Nations last June to include Alzheimer's disease among its discussions at the summit.

 

 

 

California Advocate Named 'Dementia Care Professional of the Year'  

 

Cordula Headshot

Cordula Dick-Muehlke, Ph.D.,
Executive Director, Alzheimer's Family Services Center, Huntington Beach, CA

 

Cordula Dick-Muehlke, Ph.D., of Santa Ana, CA has dedicated the last 25 years of her career to helping families who are facing Alzheimer's disease or another dementia, including turning a truly grassroots effort into a state-of-the-art model as executive director of Alzheimer's Family Services Center (AFSC) in Huntington Beach, CA, since 1995.

   In recognition of her outstanding achievements and dedication, Dementia Care Professionals of America (DCPA) this month named Dick-Muehlke the 2011 Dementia Care Professional of the Year.

     DCPA, AFA's professional  membership and training division, has given the award annually since 2007 to someone "who demonstrates professional excellence in care, compassionate performance that exceeds expectations and a dedicated commitment to people diagnosed with Alzheimer's disease or a related dementia."

   Dick-Muehlke's compassion for individuals with dementia is borne out of her own personal experience in caring for her older brother who had Down syndrome and developed dementia later in his life.

   "I deeply appreciate the recognition of my efforts to support the continued personhood of each individual with dementia," said Dick-Muehlke, a licensed clinical psychologist. "For me, this award will always serve as an encouragement to strive to even higher levels of excellence, care and compassion, as I continue my commitment to improve the lives of people affected by dementia and their families."  

   In nominating Dick-Muehlke, Anita Rodriguez-Lambert, AFSC's director of development and communications, said, "Serving families facing Alzheimer's disease is not just an academic or professional interest [for her]--it is a way of life...Dr. Dick-Muehlke's efforts are helping transform dementia care--one family at a time."

 

Study Highlights Enormous Distress of Informal Caregiving  

  Caregiver and mother

 

Informal caregivers providing care for either an aging or disabled friend or relative have higher levels of serious psychological distress and negative health behavior compared to non-caregivers, according to a policy brief by the UCLA Center for Health Policy Research.

     The brief reviewed data from the 2009 California Health Interview Survey of more than six million informal caregivers in the state who spend an average of 20 hours per week helping a friend or relative with activities of daily living such as bathing and managing medications.    

     Among the many findings:

 -       More than one million caregivers report moderate or serious distress levels, with almost one-third noting that their emotions interfere a lot with their household chores (29.9 percent) or social lives (32.9 percent).

 -       Compared with both older caregivers and non-caregivers of the same age, middle-aged caregivers are more likely to binge drink (25.5. percent), smoke (15.9 percent), and/or be obese (30.1 percent).

-       Caregivers of all ages who reported serious psychological distress were 208 percent more likely to smoke than non-caregivers with serious psychological distress.

-       Nearly one-third (29 percent) of middle-aged caregivers are single, divorced or widowed; more than two-thirds (67.1 percent) have full- or part-time jobs; and nearly one-quarter (22.5 percent) are low-income.

-       Less than 10 percent (7.4 percent) of informal caregivers report being paid for the help they provide. Moreover, nearly 20 percent spent $250 or more of their own money on caregiving in the month prior to the survey.

 

Researchers Question Hospitalizations for Nursing Home Residents with Dementia   

  Hospital Care

A recent study found that 19 percent of nursing home residents with advanced dementia were hospitalized for questionable reasons near the end of their lives, and suggested that the ability to receive higher Medicare reimbursement upon moving these residents back to nursing homes after a brief hospitalization may be at play.

     While the research, funded by the National Institute on Aging, did not unearth any wrongdoings, the researchers noted that Medicare pays about three times the normal daily Medicaid rate of $175 for skilled nursing care after a hospital stay of three days or more.

   The study looked at Medicare records of 475,000 residents in multiple states from 2000 through 2007 to identify "burdensome" transitions of care, such as moving residents once or multiple times in the last three months of life, or if there were multiple hospitalizations or lack of continuity in nursing home residency after hospitalization in the last 90 days of life.

   It found that African Americans, Hispanics and people without an advanced directive were most at risk. Nursing home residents in regions with the most "burdensome" transitions were significantly more likely to have a feeding tube, have spent time in the ICU in the last month of life, have an ulcer, or have had a late enrollment in hospice.  

 

 

News to Use:

 

-   Join AFA and several other leading groups in Alzheimer's disease and related issues for #TalkAlz, a monthly twitter discussion designed to help family caregivers as they face Alzheimer's disease. Both family and professional caregivers are invited to weigh in and share relevant experiences. The one-hour chat occurs the second Tuesday of every month at 12 p.m. (ET). The next chat will take place Tuesday, October 11. To participate, follow the hashtag #TalkAlz.

-   Medicare Open Enrollment is earlier this year. It starts on October 15 and ends on December 7. During the annual open enrollment period, Medicare beneficiaries are able to explore their insurance options, and choose and change drug and healthcare plans. For more information, call 1-800-MEDICARE (1-800-633-4227), 24/7.

-   The National Association of Boards of Pharmacy and Pfizer Inc. have developed a Web site designed to protect consumers from counterfeit prescription drugs and teach them how to find legitimate Web sites on where to buy them. On the site, www.AWARERx.com, they warn: "Counterfeit medications can be deadly. Many fake drugs contain too little, too much, or the wrong medicine, and may contain dangerous ingredients such as rat poison." The site contains recommendations of online pharmacies from the National Associations of Board of Pharmacy and the Pharmahelper online search engine with drug information, reviews, and price comparisons.

 

 

  • Diabetes further tied to increased risk for dementia...In a recent study, researchers confirmed that the incidence of Alzheimer's disease, vascular dementia and all-cause dementia was significantly higher among individuals with diabetes than among participants with normal glucose tolerance. The study involved more than 1,000 adults aged 60 and older who were free of dementia at the start of the 15-year study; over the next 15 years, 23 percent developed dementia. A significant finding was that two-hour post-load glucose levels (PG), rather than fasting plasma glucose levels, which is another test involving a fast, were closely associated with increased risk of all-cause dementia, Alzheimer's disease and vascular dementia. A glucose load is a specific amount of glucose given to someone, usually in the form of a concentrated glucose drink, as part of an Oral Glucose Tolerance Test. Read More...
  • Link found between a genetic mutation and inherited forms of two neurological disorders...A mutation on a single gene, C90RF72 on chromosome 9, accounts for nearly 50 percent of the cases of familial ALS (amyotrophic lateral sclerosis) and frontotemporal dementia (FTD), as well as 21 percent of the cases of the more common, sporadic form of ALS in a population in Finland. It was also found to be the most common genetic abnormality in more than one-third of the cases of familial ALS in other groups of European ancestry, according to two correlated studies. Read More...   
  • A possible connection between sleep-wake cycles and amyloid beta production...Researchers found a link between circadian (sleep-wake cycle) patterns and amyloid beta production, the hallmark plaque found in the brain of people with Alzheimer's disease, suggesting that sleep deprivation may boost the risk of Alzheimer's disease. After analyzing participants' cerebrospinal fluid samples, they found increased amyloid beta deposits for people aged 18 to 60 and for adults 60 and older without amyloid beta deposits at onset, but not for the older adults with amyloid beta deposits at onset. For the younger individuals, significant changes in sleep-wake patterns also resulted in significant changes to their amyloid beta deposition, but changes were flatter among the older people who started with amyloid deposits. The activities of the participants while they were awake did not affect the amyloid beta levels, but peaks and drops in the sleep-wake cycle did seem to correlate with peaks and drops in amyloid beta levels for all participants.  Read More...     

 

 

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If you have a question or concern that you would like to discuss with a social worker, please write info@alzfdn.org or call (toll-free) 866-AFA-8484.

 

© 2011 Alzheimer's Foundation of America

In This Issue

Federal Advisory Council Holds First Meeting to Forge National Alzheimer's Plan

United Nations Recognizes Alzheimer's Disease as 'Important Cause of Morbidity' Worldwide

California Advocate Named 'Dementia Care Professional of the Year'

Study Highlights Enormous Distress of Informal Caregiving

Researchers Question Hospitalizations for Nursing Home Residents with Dementia

News to Use

The Latest in Alzheimer's News

 

 Enroll in Free Webinars on Dementia 

AFA and Senior Helpers are sponsoring a Webinar series this fall for family caregivers and healthcare professionals on "Moving Forward with Alzheimer's and Dementia" with Teepa Snow, a renowned dementia care expert. The series is presented by the American Society on Aging and offers one CEU for healthcare professionals.

  

 "Understanding the Different Forms of Dementia."

Monday, November 21, 2011

2:00 p.m. - 3:00 p.m. (ET)

To register, click here, https://www3.gotomeeting.com/register/490043742.

 

"Dementia and Caregiving: Focusing on the Person While Understanding the Progression"
Monday, December 19, 2011

2:00 p.m. - 3:00 p.m. (ET)

To register, click here, https://www3.gotomeeting.com/register/440140022.  

 

 

 

 

GET INVOLVED!

 

Take Part in AFA's November Events!  

 

National Commemorative Candle Lighting 2011

 

Sunday, November 13, 2011

 

Host a local ceremony and light "candles of care" to remember and honor those affected by this illness, and to educate the public.  

 

Please sign up at www.candlelighting.org 

 

National Memory Screening Day 2011

 

Tuesday, November 15, 2011  

 

Offer free, confidential memory screenings and distribute educational materials about memory concerns, successful aging and resources.  

 

Please sign up at www.nationalmemoryscreening.org 

 

 

 Exciting Scholarship and Volunteer Opportunities for Teens    

...Emily lost her grandfather to Alzheimer's disease and was inspired to become a social worker by those who care for him.

...Holly was a caregiver for her father who had Alzheimer's disease and considers him her greatest teacher.

For students like Emily and Holly who are coping with Alzheimer's disease in their families, or for other teens volunteering in their communities, the Alzheimer's Foundation of America (AFA) offers: 

 

  • The AFA Teens for Alzheimer's Awareness College Scholarship - an essay competition for college-bound students. Annual scholarship application deadline: February 15. A grand-prize winner will receive a $5,000 scholarship; the first runner-up, $500; and second runner-up, $250.
  • The AFA Teens Video Competition - a creative video competition open to teens ages 13-19. Annual video deadline: December 1. A grand-prize winner will receive $500, and a first runner-up will receive $250.
  • AFA Teens chapters - student-led chapters that offer education, engagement and the opportunity to groom tomorrow's leaders.

For more information and applications, visit www.afateens.org  or call (toll-free) 866-AFA-8484.

AFA Teens is a division of the Alzheimer's Foundation of America, a national nonprofit organization dedicated to providing optimal care to individuals with dementia, and their families. Visit us at www.alzfdn.org.

 

 

AFA recently announced the formation of a Legacy Society, which offers special recognition to individuals who have included AFA in their wills or estate plans. Information about AFA's new Legacy Society is available at

www.alzfdn.org or by contacting AFA at 866.232.8484 

 

 

Want to support AFA on a regular basis? Donors can now make recurring monthly donations to AFA. A recurring monthly donation is a charge that is automatically deducted from your credit card each month. You may cancel at any time.  To make convenient, automatic monthly donations, or a one-time donation, click here.     

 

Our Mission

New AFA Logo

Our mission is "to provide optimal care and services to individuals confronting dementia, and to their caregivers and families--through member organizations dedicated to improving quality of life."

 

 

Join Our Mailing List!

 

Contact Us

To obtain more information about AFA, visit us at www.alzfdn.org or call us toll-free at     866-AFA-8484.

 

 

 

 

This email was sent to gsonnesso@gmail.com by jmcheffey@alzfdn.org |  

Alzheimer's Foundation | 322 Eighth Avenue | 7th Floor | New York | NY | 10001


Angelo Sonnesso M.A M.S.
Social Worker III

Friday, September 16, 2011

Fw: 1 supper club 9 21 11Press Release

 
----- Original Message -----
Sent: Friday, September 16, 2011 8:10 AM
Subject: 1 supper club 9 21 11Press Release

Press Release

9/16/11

Contact: Gail Sonnesso

252.480.3354

 

You're invited to our First Sup+per Club Meeting

The GEM Center is offering families facing memory loss an evening out with friends.

September 21 is also the date recognizing the global impact of Alzheimer's disease and is World Alzheimer's Day. We will provide information about memory loss services and supports available in Dare County. 

We will meet Wednesday September 21, in Kitty Hawk, at the Unitarian Universalist Congregation from 5pm - 8pm. The meetinghouse has an elevator if stairs are a problem.

Rev. Pat Haresch will welcome us as we meet and network with other families.

Marcia Bradley-Marshall, fitness instructor will offer a chair exercise class to help us work up an appetite.

Val and Tom Cummings are cooking an Italian dinner for us, complete with dessert

The evening will conclude with variety of songs including, "You are the wind beneath my wings", performed by Angelo on the piano.

Families and individuals with memory loss are invited to come and enjoy fellowship and great food with friends both old and new.
The cost is $15 per family of two. If this is a hardship scholarships are available please call Gail for more information.

For more information or to register please call Gail Sonnesso, executive director at 252.480.3354.

 

 

Thursday, September 8, 2011

GEM's Caring Effectively Class has been approved for 12.0 CEU's

GEM's Caring Effectively Class has been approved for 12.0 CEU's

gem logo 2004September 8, 2011

 

Hello,

 

I am writing to let you know that our Caring Effectively Class has been approved for 12.0 CEU's and The Adult Care Licensure Section confirms that this course is approved to meet continuing education requirements for assisted living facilities.

 

Effective care begins with the ability to recognize the different stages of dementia and this class is offered in 6 sessions each class outlining one stage of memory loss.  The Course is currently available at the Cooperative Extension Center in Currituck from 11:30 – 1:30 on Tuesdays. The Course will also be offered at COA in Manteo beginning on Wednesday September 14th  from  6-8pm.

It's not too late to register as there will be a make-up class on 10/18.

 

Gail Sonnesso will also outline and give concrete examples of:

 

Non-pharmacological therapies for people with dementia

 

"These are wide ranging in approach and encompass psychological, psychosocial, interpersonal, behavioral, emotional, exercise and environmental interventions.

They reflect a variety of approaches, and the creativity and commitment of many professional, and lay carers of persons with dementia around the world."[1]

 

Learning these therapies (NPT's) will enable your staff to provide more effective care while lessening the agitation and frustration of your residents.

 

My best,

 

Gail Sonnesso, MS, QDCP

 

Vision: GEM will provide effective care for people with early memory loss with training, education, and tangible support. We will offer on-going support to family caregivers, their loved ones with early memory loss and people with early memory loss living independently. We will accomplish this with our Sup+per Club model.

 

[1] NICE-SCIE Guideline on the management of dementia: http://egap.evidence.nhs.uk/CG42/guidance

 

 

 

presented by

The GEM Center

http://www.thegemcenter.org 

 



[1] NICE-SCIE Guideline on the management of dementia: http://egap.evidence.nhs.uk/CG42/guidance

 

Sunday, September 4, 2011

Music may strike a chord with Alzheimer's

 

Music may strike a chord for people
with Alzheimer's

Experts say that music can be a useful tool in helping people with Alzheimer's and other forms of dementia. For someone with the disease, spending time with music they recognize often provides a therapeutic sense a familiarity in a world they find confusing. Music speaks to an individual's feelings, so there's no pressure to understand it — they can just experience it.
Read the article >>

How Music Can Help Alzheimer's

Posted: 8/18/11 08:37 AM ET

 

Celia shares a picture of herself as a 7-year-old girl. Her young mother is leading her in a dance. Then she pulls out a second photograph, taken one week before her mother passed away from Alzheimer's at the age of 78. In this image, they are dancing again. This time, Celia is leading.

"As soon as I felt her lose herself to Alzheimer's, I would bring in my iTunes and play Spanish music for her," said
Mrs. Pomerantz. "Then I could convince her to do anything -- we would dance over to the shower or out to get a meal."

Mrs. Pomerantz intuitively found what experts say is useful tool in helping people with Alzheimer's disease and other forms of dementia.

"Music speaks to a person's feelings, so it is a sensory and not intellectual experience," said Martha Tierney of the
Alzheimer's Association. "That is partly why it works -- there is no pressure to understand it and they can just experience it."

Tapping into her mother's lifelong love of salsa music by world-renowned musicians such as Tito Puente, Celia Cruz and Pancho Sanchez, from her native Puerto Rico, Mrs. Pomerantz found a way to interact with her mother even after her mother lost her ability to talk.

"When my mother would hear music, she would give life to the music," she said, adding that her mother became known as the "dancing queen" at her final nursing home. "It brought her back to happy moments of maybe dancing with her own mother, or even her grandmother. It gave her a confidence, peace and serenity." Mrs. Pomerantz chronicled her mother's Alzheimer's in a Kindle book, "Alzheimer's: A Mother Daughter Journey."

While not everyone can rely on a history of family dancing and cultural music, it is important to find out what type of music your loved likes and keep playing it for them.

"I had a client who attacked his wife while they were driving," said Nataly Rubenstein of
Alzheimer's Care Consultants in Miami Beach, Florida, explaining that the patient's dementia led him to feel agitated in a car. "It turns out his favorite music was the Bee Gees, and now he sits in the car holding the CD case while listening that music."

After her own mother was diagnosed with Pick's Disease (a form of dementia), Ms. Rubenstein was her primary caregiver for 16 years. She recalled that one day when her mother was in a particularly "nasty" mood, the sound of Tom Jones' "What's Up Pussycat?" on the radio calmed her down.

Despite being an expert in dementia care, Ms. Rubenstein stumbled into this soothing tool to help her mother's combative and belligerent nature, which she said is very pronounced with Tick's disease. However, she cautions
caregivers to be extremely sensitive to finding music that their loved one will feel a connection to and not just randomly turn on the radio.

"If it wasn't familiar music to them, then it could aggravate them," she said. (She added half-jokingly: "If I ever get dementia, please dear God, I hope my caregivers don't play rap!")

Alzheimer's robs people of their short-term memory, explained Ms. Tierney, but their long-term memory can remain largely intact. "They maintain vivid memories of the past," she said. "A woman may look at her elderly husband and not recognize him as her husband because he does not look 35 years old anymore. So if you were to play music from that time period it would speak to her current reality."

In addition to finding the right music to soothe a loved one with Alzheimer's, a
caregiver needs to also be aware of minimizing other sensory stimulation. "A radio can be too distracting with ads," Ms. Tierney said. "And headphones may work for some, but not others. There should not be a TV on in the same room, or other distracting noise."

That said, many people have found that live music can be particularly welcome for many Alzheimer's patients. This can be in the form of someone singing old camp songs, Christmas carols, church hymns, small symphonies and more.

Find out more about how therapeutic music can be for loved ones with Alzheimer's and other illnesses at the American Music Therapy Association's website,
www.musictherapy.org.

"A person with Alzheimer's feels like everything is unfamiliar all of the time," Ms. Tierney said. "Allowing them to spend time with music that they recognize and retain memories of gives them the sense of familiarity in a world that is otherwise extremely confusing."

Saturday, September 3, 2011

FW: We the People Have the Right to Petition The White House

 

 

Feed: Fred's Head from APH
Posted on: Thursday, September 01, 2011 11:44 AM
Author: noreply@blogger.com (Michael McCarty)
Subject: We the People Have the Right to Petition The White House

 

The White House has announced We the People, an online engagement feature. On this innovative WhiteHouse.gov platform, individuals will be able to create and sign petitions seeking action from the federal government on a range of issues. If a petition gathers enough signatures, White House staff will review it, ensure it is sent to the appropriate policy experts, and issue an official response.

Visitors to WhiteHouse.gov can begin submitting petitions later this month. To sign up for an alert when it launches and preview the feature, visit http://www.WhiteHouse.gov/WeThePeople.

"When I ran for this office, I pledged to make government more open and accountable to its citizens. That's what the new We the People feature on WhiteHouse.gov is all about – giving Americans a direct line to the White House on the issues and concerns that matter most to them," said President Obama.

To create and build support for a petition, WhiteHouse.gov visitors will simply need to create an account and gather signatures by reaching out to friends, family and coworkers. If a petition reaches a certain threshold, the initial level will be 5,000 signatures within 30 days, it will be sent to the appropriate policy makers throughout the Administration, reviewed, and an official response will be published to WhiteHouse.gov and emailed to all signers of the petition.


View article...




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