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New research shows that a lack of sleep is a growing health problem around the world, and not just in developed countries.

It was found that Bangladesh, South Africa and Vietnam have extremely high levels of sleep problems. On the other hand, India and Indonesia reported relatively low levels of sleep problems.

Sleeplessness has been linked to such chronic illnesses as cardiovascular disease and diabetes. Sleep deprivation may impair physiological functions, for example, appetite or neuro-regenerative responses, and the immune system, which may actually explain the association of sleep with occurrence of many chronic diseases.

On the other hand, some people can actually sleep too much, such as the elderly, making them more prone to disease, weight gain and risk of heart problems.

Sleep is a key player in age-related health concerns, including Parkinson’s, Alzheimer’s and Sleep Apnea.  Helping your loved one find a healthy rest balance can help.

Parkinson’s
People with Parkinson’s disease performed markedly better on a test of working memory after a night’s sleep, and sleep disorders can interfere with that benefit, researcher has shown.

The findings underline the importance of addressing sleep disorders in the care of patients with Parkinson’s, and indicate that working memory capacity in patients with Parkinson’s potentially can be improved with training.

Alzheimer’s:
Alzheimer’s may reverse a person’s sleep-wake cycle, causing daytime drowsiness and nighttime restlessness. These sleep disturbances often increase as Alzheimer’s progresses. Eventually, round-the-clock naps might replace deep, restorative nighttime sleep.  The Mayo Clinic recommends how to a promote good night’s sleep.

Sleep Apnea:

Sleep apnea, the disruption of sleep caused by obstruction of the airway, interferes with sleep’s effects on memory. As many as one in three elderly men have at least a mild case of sleep apnea. 300 elderly women who were mentally and physically fit, with an average age of 82, led Kristine Yaffe, a professor of psychiatry at the University of California-San Francisco, to find that one in three women had sleep apnea. The women with sleep apnea were 85% more likely to show the first signs of memory loss.

Sleeping.

[Photo Credit: Daniel Morris, Flickr]

Antipsychotics

Dr. Cheryl Phillips, geriatrician and senior VP or LeadingAge, blogged about the very serious dangers of over-medicating dementia patients.  This issue is seen as critical around the world and sends a global message for change. Rather than paraphrase, here is Dr. Phillips’ blog in her own words:

Federal officials are working to place compassion at the center of how our nation aims to treat elderly patients suffering from dementia.

The Centers for Medicare & Medicaid Services (CMS) has announced that they’ll coordinate an effort to dramatically reduce the use of antipsychotic drugs among dementia patients in nursing homes. The agency’s plan acknowledges that these powerful pharmaceuticals are often overused — and represents a valuable first step toward improving the way we treat people with this condition.

But government alone shouldn’t dictate how we deal with dementia. Families and caregivers must also recognize when medication is appropriate — and when it’s not.

More than five million Americans are afflicted with Alzheimer’s and related dementias. Coping with a loved one suffering from the disease is an immensely trying experience — one that can leave even the most stoic among us desperate to try anything to alleviate a family member’s suffering.

It’s no surprise, then, that nearly 40 percent of dementia patients living in nursing homes receive antipsychotic drugs. Overall, some 14 percent of nursing home patients are on antipsychotics. These are alarmingly high numbers, given how ineffective — or even dangerous — the drugs can be.

For starters, antipsychotics have not been approved by the federal Food and Drug Administration to treat dementia. No drugs have. Only about 20 to 30 percent of elderly dementia patients who take an antipsychotic drug show even marginal improvement.

For such unimpressive results, the potential harms are significant. For every 53 patients treated with such a pharmaceutical, one will die. And for every nine to 25 patients that benefit from an antipsychotic, one will die.

As a result, the FDA has issued a rare “Black Box Warning” stating that patients administered the drugs face a risk of death 1.6 to 1.7 times greater than those who take a placebo.

And yet, a blind faith in the effectiveness of antipsychotics that’s not borne out by the science remains. Abandoning this belief is a necessary first step toward improving the way we treat dementia — and saving lives.

To do so, we must first change the way we think about the illness. Many view dementia as the cause of a number of behaviors that need to be corrected or controlled. This misconception fits our cultural penchant for pills quite nicely. For instance, Grandpa George’s loud incoherence or Aunt Esther’s refusal to calm down are symptoms that need to be alleviated through medicine — or so the thinking goes.

But folks displaying the disruptive behaviors associated with dementia are more often trying to communicate with those around them. Their “acting out” signifies their frustration at their inability to do so.

Consequently, people interacting with them — whether family members or professional caretakers — ought to try first to understand what the patient is trying to convey. Then, they can take appropriate action.

For instance, yelling, wandering, or resisting care are not symptoms of psychosis and will not be resolved through the use of antipsychotics or other medications.

But if a drug is judged necessary, keeping close tabs on it is imperative. A checklist can be helpful. Is the person showing signs of improvement? Are they better able to engage with others and with their surrounding? Can that individual get by on a lower dose? Is the medication even working at all?

All too often, families and caregivers fail to ask these questions. That’s a mistake. Given the risks associated with antipsychotics, determining how to address dementia-fueled behaviors without drugs is vital.

Fortunately, there’s a growing body of evidence that supports the effectiveness of behavioral modifications and non-pharmacological interventions to treat dementia. This new approach isn’t just something for nursing home staffers or professional caregivers to consider — it’s important for us all. Odds are that we all know someone who suffers from the condition — or someday will. Decisions about their potential paths of treatment may fall to us.

CMS is right to try to reduce the use of dangerous antipsychotics in dementia patients. But it will not succeed without a shift in the way we all think about this debilitating condition.

[Photo Credit: dvortygirl, Flickr]

Senior citizens may be dominating the global population, but they have not been the popular demographic on the film screen.   When they do make it into films, it’s rare that the elderly are portrayed in a positive light and leave us with a contented feeling about ageing.  This is hopefully about to change.

Pixar’s “Up” succeeded in opening up the hearts of all ages to enjoy elderly characters as endearing, comical, and inspiring.  Now Spain brings us a 2D animated film for adults, “Wrinkles”, by Paco Roca. 

Although the film is based on a 2008 comic book by the same name, Roca borrowed experiences and personalities from actual experience he had with people living with Alzheimer’s.  He spent six months conducting research in a nursing home and interviewing people as role models for his characters.

The film brings up an important topic not often discussed outside of care giving circles, but may be used as a great way to broach the topic when it’s difficult to talk about it.

The film is sad, funny, heartbreaking and heartwarming.  According to the synopsis, “Wrinkles portrays the friendship between Emilio and Miguel, two aged gentlemen shut away in a care home. Recent arrival Emilio, in the early stages of Alzheimer, is helped by Miguel and colleagues to avoid ending up on the feared top floor of the care home, also known as the lost causes or “assisted” floor. Their wild plan infuses their otherwise tedious day-to-day with humor and tenderness, because although for some their lives is coming to an end, for them it is just beginning.”

The film has won awards across Europe, UK and US including first prize in several national film festivals. “Wrinkles” is coming to theaters worldwide this year. You can watch the trailer here:

By Jackie Pinkowitz, M.Ed.; Board Chair, CCAL-Advancing Person Centered Living

[To support dementia initiativedementia care and learn more about research and practices, register for the International Alzheimer’s Disease Study Tour Today! ]

On Friday, June 29, 2012, The National Dementia Initiative, gathered in Washington DC at LeadingAge for their first meeting to form  recommendations on person-centered non-pharmacologic strategies to address behavioral and emotional aspects of caring for individuals living with dementia in home and community-based settings.

The meeting’s participants included nearly 60 dementia experts spanning research, policy and practice from around the United States. CCAL-Advancing Person-Centered Living is one of the leaders of this initiative.

Like most significant efforts, The National Dementia Initiative “will take a village” to achieve its lofty purpose which began in 2011 with the germ of an idea:  it should gather a leadership team representing research, policy and practice sectors that would:

  • Work diligently to connect dementia experts from all three sectors across the United States and beyond
  •  Who will volunteer their time and expertise
  • To collaborate virtually and in person reframing dementia care  by using a person-centered holistic well-being philosophy and approach
  •  In the context of understanding and responding to “difficult or challenging” behaviors through person-centered non-pharmacologic practices.
Dementia initiative, caregiving

All photos credit of CCAL

In the ensuing months, “sixty villagers” heeded the call and began virtual communications in preparation for our all-day gathering on June 29th, 2012 — a gathering that can only be described as passionate, intense, and singularly focused on our common purpose.  Today, the villagers are back home, enthusiastically volunteering for three  workgroups being formed  to advance this effort.

The aspiration of the recent meeting was to come together on key principles and practices of person-centered dementia care and provide input for a comprehensive White Paper, which will focus on how to support individuals living with dementia.  A workgroup of volunteer participants will be assisting in disseminating and distributing the final paper come September 2012.

To truly understand What Matters Most in our Initiative, you need to gaze upon some of the faces in this blog: faces of those we love, care for, and caringly assist with utmost respect and dignity.

When I opened our all-day gathering, framed photos of “Those who Matter Most” decorated every table and a beautiful kaleidoscope of faces flashed across the screen as I acknowledged:  “Clearly the most important people in our village are not here today—the people living with dementia, their families, and their care partners.  But they are with us in spirit and we honor them through all the wonderful pictures so many of you provided.  I know that if we continue to work together with open hearts and open minds, we will have an incredibly meaningful and productive meeting; and we will succeed in advancing this most important Initiative for these most important people.”

Dementia Initiative

So I urge you, regardless of whatever Change Effort you may be conceiving or currently leading,  to truly understand what drives your amazing villagers (i.e. What Matters Most  to them; what motivates and energizes them to give their all for a greater good) so that you may tap into it throughout your entire fascinating future-focused journey of change…

IAHSA provides an opportunity to join the conversation on What Matters Most and engage in dementia care best practices on October 15-20, 2012 in LA and San Diego, California. IAHSA, in partnership with Alzheimer’s Disease International, will host the International Alzheimer’s Study Tour which will explore the research and treatment protocols for early stage dementia as well as provide a shared learning experience through site visits with communities.

Register today!

Latinos and African Americans with Alzheimer’s disease live longer than do whites, Native Americans, and Asians, according to a study published by the journal NEUROLOGY. The findings transcended socioeconomic status, education levels, age when symptoms began, and other factors.

The study followed 31,000 Alzheimer’s patients for an average of 2.4 years and found that Latinos lived an average of 40% longer than whites, while African Americans lived 15% longer than whites. Asian and Native American patients’ longevity was similar to that of whites.

Factors that could account for the differences include the social support of extended families and varying levels of health and other diseases in addition to the Alzheimer’s, according to study author Kala Mehta of the University of California, San Francisco. “Determining the underlying factors behind this difference could lead to longer survival for everyone with Alzheimer’s disease,” says Mehta. “Regardless of the reason for this difference, these findings may have implications for health-care planning for people with Alzheimer’s disease.”

This summer we were given a very special movie, Away From Her, a heart breaking story about a family’s struggles with the ravages of Alzheimer’s disease. The film portrayed the ravages of the affliction with clear-eyed honesty, tracking not only the effects on the victim, played by Julie Christie, but also on the caretakers who provide support even as she faded away right before their eyes.

So when I read the USA Today news article A New Page in O’Connors’ Love Story about how Alzheimer’s has changed the life of John O’Connor and that of his wife, retired Justice Sandra Day O’Connor, I couldn’t help but think about how life imitates fiction. In the film, as in the real life of John O’Connor, the main character finds a new love with a fellow resident at the Alzheimer’s facility. While the impact on the partner ‘left behind’ can be devastating, it provided a sense of relief for Justice O’Connor. As their son Scott said, “For Mom to visit when he’s happy – visiting with his girlfriend, sitting on the porch swing holding hands – was a relief after a painful period’.

As a reviewer said of Away From Her – ‘it is poignant, wise and unafraid’. The same can be said of Justice O’Connor and her family.

Sun

As I entered the Orlando Convention Center on Sunday morning I came upon an incredible exhibit of 52 quilts telling the story of living with Alzheimer’s disease.

The Alzheimer’s Art Quilt Initiative is a grass roots effort to raise awareness and fund research for Alzheimer’s disease. It was started by Ami Simms whose mother is one of 5.1 million Americans who suffer from Alzheimer’s disease. “I began the Alzheimer’s Art Quilt Initiative because I think it is possible to make a difference, one quilt at a time.”

The exhibit is beautiful and moving. Experiencing these quilts made me realize how many ways Alzheimer’s affects so many people. They also eloquently demonstrate how powerful art can be in telling a story.

Throughout the conference I will proudly wear my “I saw the quilt’ sticker.

About this blog

IAHSA’s Global Ageing Network Blog was created because of you!! We got your message loud and clear – “Provide us with a quick and nimble communications vehicle so we can stay connected and create community across borders".

Questions? Email us at iahsa@leadingage.org.

Authors

Virginia Nuessle, Study Tour Director

Majd Alwan, Director, CAST

Alla Rubinstein, Program Administrator, IAHSA

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