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The Building Our Largest Dementia (BOLD) Infrastructure Act introduced in House and Senate

11/8/2017

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Exciting developments in the quest to find a way to slow this disease....
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The Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM) are proud to support the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act, new bipartisan legislation prioritizing our nation’s approach to Alzheimer’s disease. The BOLD Infrastructure for Alzheimer’s Act was introduced by Senators Susan Collins (R-Maine), Catherine Cortez Masto (D-Nev.), Shelley Moore Capito (R-W.Va.), Tim Kaine (D-Va.), and by Representatives Brett Guthrie (R-Ky.), Paul Tonko (D-N.Y.), Chris Smith (R-N.J.) and Maxine Waters (D-Calif.). The legislation was developed in close partnership between the sponsors, the Alzheimer’s Association and AIM.
“Too often, Alzheimer’s and other dementias are viewed just as an aging issue, ignoring the public health consequences of a fatal disease that more than 5 million Americans are living with,” said Harry Johns, Alzheimer’s Association and AIM President and CEO. “The BOLD Infrastructure for Alzheimer’s Act will ensure communities across the country have access to resources to promote effective Alzheimer’s interventions and better cognitive health that can lead to improved health outcomes.”
The BOLD Infrastructure for Alzheimer’s Act would establish Alzheimer’s Centers of Excellence in communities around the country to expand and promote the evidence base for effective Alzheimer’s interventions, and issue funding to state and local public health departments to promote cognitive health, risk reduction, early detection and diagnosis, and the needs of caregivers. Critically, the BOLD Infrastructure for Alzheimer’s Act would also increase collection, analysis and timely reporting of data on cognitive decline and caregiving to inform future public health actions.
“Alzheimer’s disease is one of the greatest and under-recognized public health threats of our time. Five and a half million Americans are living with the disease, and that number is soaring as our overall population grows older and lives longer,” said Sen. Collins. “After decades of expanding biomedical research in Alzheimer’s, we are ready for the next step: to translate research into practice. I urge my colleagues to join us as cosponsors of this critical bipartisan legislation.”
“As one of the leading causes of death in the United States, Alzheimer’s prevention is crucial to combating this debilitating disease,” said Sen. Masto. “The number of Americans afflicted with this illness is growing at a staggering pace, and without intervention, as many as 16 million Americans could be living with the disease by 2050. The BOLD Infrastructure for Alzheimer’s Act will address the scourge of Alzheimer’s by creating centers of excellence and assisting state and local governments in their efforts to promote awareness through education and dissemination of best practices. We must work to promote Alzheimer’s prevention, enhance access to treatment, improve patients’ quality of life and find ways to end Alzheimer’s before it claims more lives.”
At an estimated cost of $259 billion annually — including $175 billion in Medicare and Medicaid payments — Alzheimer’s is the most expensive disease in the country, and is the only leading cause of death in the U.S. that cannot be prevented, cured or even slowed.
“Alzheimer’s is the costliest disease in America, with over 5 million Americans living with this disease. Almost every Kentuckian I know is affected by this disease in some way, and many have become caregivers for their family members suffering from Alzheimer’s. That’s why I was proud to join a bipartisan, bicameral group of members to introduce the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act. This bill supports cooperative agreements between public and private entities focused on ways to develop best practices for intervention and caregiving, which will help lower costs and promote evidence based research for those who suffer from this awful disease and for those who care for these individuals,” said Rep. Guthrie.
“From my very first days in Congress, I have worked to improve the lives of those suffering from Alzheimer’s disease and help modern medicine move closer to finding a cure. Through the Alzheimer’s Accountability Act and the HOPE for Alzheimer’s Act, we laid the groundwork for unprecedented federal investments in Alzheimer’s research and improved care planning for those facing an Alzheimer’s diagnosis. Now we have a critical opportunity to take another giant step forward on this issue, making investments in Alzheimer’s infrastructure that will drive public health research and promote prevention, early detection and diagnosis, all leading to lower costs and better care. I’m proud to stand alongside my fellow Alzheimer’s champions in introducing the BOLD Infrastructure for Alzheimer’s Act and I look forward to getting this important legislation signed into law,” said Rep. Paul Tonko.
“We are grateful for the bipartisan support by the BOLD Infrastructure for Alzheimer’s Act’s sponsors and for their continued leadership in the fight to end Alzheimer’s,” said Robert Egge, Alzheimer’s Association chief public policy officer and AIM executive director. “While we work towards the development of effective preventions and treatments for Alzheimer's, we must implement effective public health solutions today that can help to improve the lives of and outcomes for those living with the disease.”
“Alzheimer’s is such a devastating disease that affects millions of Americans and their loved ones, and the more we can do to find a cure, the better. At the same time, we must also do what we can to ease the pain of those suffering and provide help to caregivers, taking a truly comprehensive approach to this fight,” Sen. Moore Capito said. “By creating a public health infrastructure, this bipartisan legislation will help us tackle Alzheimer’s on all fronts and move us closer to finding a cure.”
“As the number of people diagnosed and living with Alzheimer’s disease continues to grow, we have to help alleviate the burden this disease has on our health care system and families across Virginia,” said Sen. Kaine. “The BOLD Infrastructure for Alzheimer’s Act addresses a problem I often hear from Virginians: how do we improve care for loved ones who are battling Alzheimer’s? States often lack resources that would help caregivers address patient needs. This bipartisan bill would improve care and outcomes by providing a full range of information and support to families caring for loved ones with Alzheimer’s, and boosting local efforts dedicated to addressing this pressing public health need. We are also extremely thankful for the support of the Alzheimer’s Association on this bill, and the work its local chapters do in communities across America to help patients and their families and raise awareness about the disease.”
In 2005, the Alzheimer’s Association and the Centers for Disease Control and Prevention (CDC) partnered to create and launch the Healthy Brain Initiative (HBI) and developed the Public Health Road Map. The HBI Road Map includes actions for state and local public health departments to promote cognitive functioning, address cognitive impairment and help meet the needs of caregivers. The BOLD Infrastructure for Alzheimer’s Act would increase implementation of the HBI Road Map nationwide.
“Many, many family and friends of Alzheimer’s patients sacrifice their time and resources to assist their loved ones who are unable to care for themselves. We must ensure they have as much support as possible,” said Rep. Smith. “As the number of Alzheimer’s patients is expected to multiply in the coming decades, we must increase funding for vital research and education on how to help patients and their caregivers cope with it. This has become a moral imperative.”
“I am proud to join my colleagues to introduce the BOLD Infrastructure for Alzheimer’s Act. This innovative bill will promote early detection and diagnosis, support caregivers, and reduce health disparities related to the care and treatment of Alzheimer’s patients,” said Rep. Waters.
Former U.S. Surgeon General and CDC Director Dr. David Satcher has said, “Alzheimer’s is the most under-recognized threat to public health in the 21st century.” The Alzheimer’s Association, working through the Alzheimer’s Impact Movement and its advocates, will work to gain further bipartisan support for the BOLD Infrastructure for Alzheimer’s Act in the 115th Congress.
 
Alzheimer's Association®
The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. For more information, visit alz.org.
Alzheimer’s Impact Movement
The Alzheimer’s Impact Movement (AIM) is a nonpartisan, nonprofit advocacy organization working in strategic partnership with the Alzheimer’s Association. AIM advocates for policies to overcome Alzheimer’s disease, including increased investment in research, improved care and support, and development of approaches to reduce the risk of developing dementia. For more information, visit alzimpact.org.
Contact: Alzheimer's Association
Media line: 312.335.4078
Email: media@alz.org
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Caregiving Tips for Sundowning Syndrome

4/9/2016

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​Many caregivers observe that their loved ones or caregiving clients become more agitated and more confused and disoriented in the late afternoon or early evening, corresponding with the sun going down. This phenomenon is common enough to have been given the name “Sundowning Syndrome”.
 
The exact cause of this syndrome is not well understood; however, the trigger for the behavior seems to be fading light. As a result, we have some practical advice for how to ease your loved one through this difficult time of day.
 
Change the scene
Anticipate the setting sun, and create a more smooth transition by turning on lights before the sun goes down. You can also close the drapes
 
Minimize napping
Keeping a consistent schedule will help keep your loved one or client sleeping better at night. Taking long naps in the afternoon often delays the onset of regular sleep, and increases the behaviors triggered by the fading light.
 
Keep caffeine at breakfast
Caffeine can disrupt the body’s natural rhythm, and should be avoided during the afternoon and evening. You can also provide a larger meal mid-day, and a smaller supper in the evening as a way to ease into sleep. Providing calming activities such as listening to relaxing music or playing a familiar game to keep your loved one positively engaged.
 
At Caring Hands Caregivers, we provide caregivers and loved ones the information and resources they need to better help the seniors that they care for.  We can also provide back up for you or your caregiver, only at night. Feel free to contact me via email if Caring Hands Caregivers can help you or your loved one.

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Exercise Can Benefit People with Parkinson's

3/16/2016

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Movement problems experienced by people with Parkinson's disease are caused by a shortage of an important chemical messenger found in the brain called dopamine, as explained in this NIH Senior article. 

As a result, exercise can be an important part to producing good outcomes for Parkinson's patients. This National Parkinson's Foundation (NPF) article reports  that exercise can improve gait, balance, tremor, flexibility, grip, and motor coordination. In addition, they cite researchers at the University of Southern California (Fisher et al.) who, when looking at the brains of mice, found that while exercise didn't change either the amount of dopamine or the number of nerve cells in the animal's brains, the mice that had exercised had brain cells that were using more efficiently. 

The NPF also provides this exercise tip sheet especially for people with Parkinson's disease.  Examples of people with Parkinson's that are deriving benefits are well documented, including these five inspiring people and people in Texas who take a ballet class specifically designed for people with Parkinson's.

At Caring Hands Caregivers, we work with our clients to develop activity plans that suit their specific needs. If you or a loved one has Parkinson's disease, and would like to hear more about our services, send me an email. We can schedule a care options review at your convenience.
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Hope for Stroke and Brain Injury Sufferers

3/11/2016

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When someone suffers a stroke or a traumatic brain injury, their lives change in an instant. While some brain function may return through healing and rehabilitation, many sufferers plateau, and never return to their former selves.

​However, hope is on the horizon thanks to functional neurosurgeons like Jocelyn Bloch. In 
Dr. Bloch's recent TEDx talk in Zurich, she explains how she and her colleagues discovered a particular kind of cells that may enable brains to help heal themselves.
Dr. Bloch and her colleagues have proven their theories through developing cell cultures using monkey brains, and reintroducing those cells. They did so with a monkey that didn't have any neurological issues, and discovered that the reintroduced cells disappeared. However, when the cells were reintroduced into a monkey that had damaged his brain, the cells remained. She and her colleagues believe that the cells remained to repair the damage.

Moreover, they performed this same experiment with a monkey that had suffered neurological damage, and had rehabilitated until he plateaued. Prior to reintroducing the cells, they had the monkey take a motor skills test. Then, they reintroduced the cells, and two months later, had the monkey take the same test. His progress was clearly and remarkably better. 

Medical breakthroughs like this provide hope to those of us who care for sufferers of stroke or other brain injury.  
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Tips for communicating with your loved one who has Alzheimer's

2/7/2016

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Through years of experience, we've developed better ways to communicate with our clients who have Alzheimer's disease.

Today, we'd like to share one of these key tips, in the hopes that it can help you through this difficult journey.


Sympathize with their reality
People who have Alzheimer's tend to feel very vulnerable in their confusion, and can perceive threats that aren't actually there. Our natural tendency is to let our loved one know that these threats don't exist, yet that approach can lead them to experience an increased sense of vulnerability.

Our approach is similar to one illustrated in this article, highlighting  a presentation given by Teepa Snow, an Alzheimer's expert.  Sympathizing with the angst that your loved one is experiencing can go a long way to guiding the conversation in a way that eases the suffering of your loved one with Alzheimer's. In Teepa's illustration, if your loved one is accusing their neighbor of stealing something, you can say, "I'm sorry that happened to you. You seem really angry. I'd be angry, too, if that happened to me."

Helping clients-- and their families--through the Alzheimer's journey
Watching someone we love suffer from Alzheimer's is extremely difficult and painful. We often want to bring them back to our reality, to an earlier sense of normal. Instead, we have to find a way to come to terms with their loss of function, grieve that loss, and guide them through their new reality.

That's why we provide training and resources to our caregivers and to the families of our clients. We know that providing care is a team effort, and that our clients benefit from a unified approach. If you would like to find out more, send me an email. We're here to help.
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Preparing home for your loved one, post-stroke

4/29/2015

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When your loved one has survived a stroke, they are working hard to adjust to their 'new normal'. While they may be eager to get home from the hospital, some crucial adjustments need to be made to their home in order to keep them safe and mobile. 

Preparations will vary depending on the severity of the stroke, and your loved one's physical limitations.  Here are some things to consider as you get ready to bring your loved one home.

Start with a walk-through
Considering your loved ones mobility, and any assistance that they'll need to get around. For example, if they are using a walker, you'll want to measure the width of the walker, and move the furniture to allow for easier access.

Prevent falls
Make sure that any rugs or bath mats are slip proof. Install grab bars, particularly for getting in and out of the bathtub or shower.  You may want to install a bath & shower seat, to allow them to bathe without strain.

Provide easy access
Place frequently used items within reach in the kitchen, bathroom, and nightstand. For example, you may need to reshelve cups, glasses, plates, and basic pots and pans. Provide a reading lamp within reach on the nightstand, and move the clock closer to their bed.  If necessary, you may want to provide a commode for easier nighttime use.

At Caring Hands Caregivers, we have qualified staff to help your loved one adjust and care for your loved one in their home, post-stroke.  We can accompany you on the walk-through, make recommendations, and provide on-going guidance as needs change.  To get started, just send me an email at scott@chcgivers.com.

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Telltale signs of depression in seniors

4/7/2015

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Depression among the elderly often goes untreated, as the symptoms are similar to the symptoms of aging. According to this article published by Philips Lifeline, anywhere from 14-20% of seniors exhibit some depressive symptoms.  That percentage is significantly higher for seniors in long-term care facilities.

Some potential symptoms of depression in seniors include:
  • Social withdrawal--even when offered chances to socialize, depressed seniors will elect to not participate in activities.  Or, they can experience something called anhedonia, when they no longer enjoy activities that they used to love.
  • Trouble concentrating--inability to focus on the task at hand, or low motivation to take a task all the way to completion.
  • Neglecting personal care--decreased attention to basic grooming or oral hygiene, or not taking medication as prescribed.

For additional information and advice, read the full article.  If you suspect that your loved one is suffering from depression, they can get a thorough screening assessment free of charge for seniors covered by Medicare.  Treatment that includes therapy, medication, or some combination has proven to be effective in many cases. However, keeping involved in social interactions is key to making any treatment work.

If your loved one in the San Francisco Bay Area is in need of some help planning and getting to social activities, we can help by providing hourly care.  Just send me an email, and we can schedule an in-home care assessment.

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Promising Findings with Parkinson's Vaccines

3/25/2015

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Researchers all over the world have been working hard on immunotherapy approaches for treating Parkinson's disease.  

Just last week, the Irish biotech company Prothena announced that its vaccine to slow the progression of Parkinson's disease was safe and tolerable in a Phase I study.  That marks a second vaccine milestone within the past year.  Last July, an Austrian biotech company, AFFiRiS, funded by the Michael J. Fox Foundation reported similarly promising results.  

According to a the Michael J. Fox Foundation blog, both vaccines take a similar approach, introducing an antibody against the protein alpha-synuclein.  That protein clumps in the brain cells of people with Parkinson's Disease, leading researchers to believe that clearing out the clumps of alpha-synuclein will protect the brain cells from further degradation caused by Parkinson’s.

While each of these therapies have only completed the first phase, further testing with Parkinson's patients is planned for early 2016.   If you would like to read more articles like this, follow us on Facebook , on Twitter, or on LinkedIn.

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Detecting pain in late-stage Alzheimer's and dementia sufferers

3/19/2015

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While it was once thought that dementia sufferers did not always feel pain, research has concluded that this is not the case.  However, sufferers of Alzheimer's disease and other dementia have limited ability to understand and communicate about what they are experiencing.

That makes it more important for in-home caregivers to look for non-verbal cues to detect pain.  Alzheimer's Australia published a helpful Q&A that helps caregivers to assess and manage pain for Alzheimer's and dementia sufferers.

Here are some non-verbal cues that the Q&A said to look for:
  • facial grimacing 
  • gestures that indicate distress
  • guarding a particular body part or reluctance to move 
  • moaning with movement 
  • limited range of motion or slow movement
  • increased heart rate, blood pressure or sweating
  • restlessness
  • crying or distress
  • increased or decreased vocalizations
  • withdrawn social behavior
  • lethargy or increased sleep
  • disrupted or restless sleep 
  • decreased appetite (and decreased nutritional intake) 
  • increased confusion
  • anger, aggression, irritability or agitation
They point out that these can also be signs of other issues, pain should be considered as a potential cause.

For more information about how to assess and manage pain for Alzheimer's and dementia sufferers, click here for the full report.  If you would like to read more articles like this, follow us on Facebook or on Twitter.
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Treating caregivers like family

3/11/2015

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Caring Hands Caregivers is a family-owned and -operated agency that takes great care of our clients--and our caregivers.  We recognize that our caregivers are our heart and soul, so we treat them like family.  In order to make sure our caregivers succeed at providing the best care possible, we provide on-boarding, and on-going communication and support.  

In addition, we now have quarterly caregiver recognition program to show our appreciation for all that our caregivers do.  Called the CARE award, eligible caregivers qualify to win recognition--and a nice gift card--based on the following CARE criteria:
  • Communication - Consistent communication with the office team.

  • Attitude - Can-do attitude, diaplaying proactive problem solving skills.

  • Reliability - Dependability, day-in and day-out.

  • Excellence - Going above and beyond daily duties.

We look forward to recognizing our great caregivers, and highlighting their stories. Look to this blog, or follow us on Facebook to hear about the latest winners.  Or, if your a caregiver and want to work with us at Caring Hands Caregivers, please submit your application.
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    Scott Stanley is the Owner of Caring Hands Caregivers, a Bay Area caregiver agency focused on preserving dignity through quality in-home care. 

    You can reach Scott by email to scott@chcgivers.com.

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