An ounce of prevention is worth a pound of cure.
Hello all you fabulous caregivers! I have been taking a bit of a break from writing the blog for a variety of reasons. But, I didn't even post this year on World Alzheimer's Day (September 21st), for the first time since I created the blog 5 years ago. Why, you ask? Because I just couldn't make myself put forth the staggeringly scary statistics about how often someone is diagnosed or about the impacts to a caregiver's life when AD is diagnosed -- again. It felt so overwhelmingly negative that I simply couldn't do it.
Now, don't get me wrong. There's a lot of positive research happening, some of which I've been writing about since 2012, but it is now receiving mainstream media attention. For example, both music and meditation have been getting lots of attention, with the Veterans Administration now offering mindfulness meditation to veterans with post-traumatic stress disorder. There are more documentaries, more information flowing, more assistance to caregivers -- all that is truly a wonderful change. But, I felt like a voice crying in the wilderness when I wrote about the one thing that daughters caring for AD parents consider perhaps the most distressing of all when they see their loved one deteriorate before their eyes: will I also have this disease? It's a natural and unavoidable question when we see first hand the ravages of the disease.
Until now, the widely promoted information is that Alzheimer's has no cure, and there's nothing much we can even do to slow it down. Grim, right? However, I know there are things we can do to prevent it (check out the rest of this website for that info) and finally, here is some validation that it can also be reversed. Yes, I said reversed.
I discovered a series that is airing online right now, for free. It's called Awakening from Alzheimer's and offers video interviews with a dozen experts in various medical and research fields on all kinds of topics related to prevention and reversal of AD through often simple things that most of us can easily do to improve our health, cognition, and well being. In fact, this series has a huge arsenal of tools and some starling new information to empower us to do exactly that. The subtitle, "Where Alzheimer's meets hope" expresses it perfectly. Hope. We all need hope. This information will serve both you and your loved one with AD. Nothing to lose, as it's free, and everything to gain. Check it out. The series is on Day 4 now, so jump on getting registered.
I wish I'd had even a small bit of this information during my time as caregiver. But, I'm sure happy to have discovered it now. Even though it's too late to help my mother, I believe it can help millions. Please share it. Hope and empowerment are precious.
As a caregiver educator, yoga student and teacher, I was intrigued by a UCLA research study last month. It concluded that a simple, low-cost yoga program can enhance coping and quality of life for caregivers. ~Angela Lunde, author of the Mayo Clinic Alzheimer's Blog
I was really delighted to see that Angela Lunde, who writes an excellent Alzheimer's blog for caregivers at the Mayo Clinic endorsed a study that I've known about for quite some time. In fact, I wrote a blog post about it in March of 2012, which I am re-posting here in its entirety, since it still very much applies:
Stress, Meditation and Self-Help, Oh My!
I just posted a link on the resource page for a new study at UCLA Semel Institute for Neuroscience and Human Behavior which had very promising results on a small group of caregivers. They showed marked improvements in both cognitive function and lower levels of depression after using Kirtan Kriya yoga meditation for a 12-minute daily session over an 8 week period.
The control group used only soft, relaxing music, without the chanting meditation, and showed significantly less of a result. This is pretty amazing that it's possible to have a strong positive impact in 12 minutes a day with something that is basically free and easy to do. I'm intrigued by this, since I have been a student of yoga and meditation for many years. Yet, while I was in the midst of the worst stress of the caregiving role, I strangely abandoned those precious tools which would have helped to keep me in balance. Why? Self-sabotage? Perhaps. Burnout? Quite likely. When you find yourself in a prolonged, stressful situation the choices you make may not be rational because of the combined effects of fatigue, depression, ill health, frustration and guilt. The toxic mix of emotions can undermine even the strongest psyche, wearing it down like flowing water wears rock over time. Think, Grand Canyon, here. Caregiving stress is very similar in that it happens gradually, over a period of time, and you might not notice that your coping skills are deteriorating -- or, worse, you might notice and still not be able to make a good decision to rectify the situation. It's that sense of powerlessness, helplessness in the face of the situation, that is so significant and the point at which this entire website/blog is directed.
If you find yourself in that "hanging-on-at-the-end-of-your-rope" place, and seriously considering letting go as an option, this lifeline is for YOU! I am putting together a series of short video meditations just for caregivers, so that you will have some guidance to do your daily 12-minute work toward finding balance, calm, and even your own inner peace again! Stay tuned.
Back to the present, I realize that I never completed the video meditations for caregivers, and so there is no time like this moment to get that done. I hope to get my own version of the Kirtan Kriya posted shortly and will give you the link here on the blog. I purchased a copy from the Alzheimer's Research and Prevention site and have used it, but to my musician's ears, it has some definite flaws (yes, I am getting over my perfectionism. Just give me another decade or two and I should have it mastered). I also purchased their Alzheimer's Prevention Toolkit, which introduces the 4 Pillars of Alzheimer's Prevention(TM) which focuses on diet and brain-specific nutrients, exercise for mind & body, stress management and spiritual/psychological well-being. There is a very thorough up-to-date white paper available for download at the site below: For more information or to purchase, go to www.AlzheimersPrevention.org or email them at firstname.lastname@example.org
Link for white paper:
I am simply amazed that this type of yoga meditation can produce verifiable results in only 12-minutes a day over an 8-week period. I think you will find the white paper quite enlightening in terms of current research. The information presented there is well-documented. These practices are something that virtually anyone can do, and as Angela Lunde points out, very low cost. They may pay very high dividends indeed if they can prevent or significantly postpone Alzheimer's Disease or help to improve cognitive skills. Frankly, I see no downside in trying them, if you feel the motivation. The possible benefit is life-changing.
The RCI is a service unit of Georgia Southwestern State University in Americus, Georgia, and combines advocacy, education, research and service in supporting caregivers by promoting caregiver health, skills, and resilience. The focus is on helping caregivers cope with chronic illnesses and disability across the lifespan. This includes such a wide range (everything from autism to cancer, Alzheimer's to traumatic brain injury) that to get a full representation, I suggest you take a look at their caregiver resources page: www.rosalynncarter.org/ which features over 100 links to information and assistance sites. The programs of outreach include the Georgia Care-Net Coalition, which represents 12 regions around the state and serves as a voice for caregivers, the REACH program for Alzheimer's caregivers providing training and support in partnership with other organizations in 17 states, and Operation Family Caregiver, which provides free, confidential support, counseling and training for military family caregivers in-home, or via telephone or Skype. If you or someone you know could benefit from this program, call for information at (229) 931-2034.
The Summit featured keynote speaker Elizabeth Dole, who spoke eloquently on behalf of the million (yes, million!) military caregivers who are valiantly trying to cope with the approximately 725,000 veterans who are returning from the battlefield with both visible and invisible injuries and disabilities, including post-traumatic stress disorder (PTSD) and traumatic brain injury (TBI). The urgent need is overwhelming the services the Veteran's Administration is able to provide, leaving so many families in dire straights. Elizabeth Dole has created a foundation to assist these many military family caregivers in coping with the crisis: Elizabeth Dole Foundation website
With Elizabeth Dole's inspiring and passionate words still reverberating in our hearts, there was a brilliant presentation by Gregory Fricchione, MD, Associate Chief of Psychiatry and Director Benson Henry Institute for Mind Body Medicine at Massachusetts General Hospital and Professor of Psychiatry at Harvard Medical School. Dr. Fricchione's presentation was simply amazing in its depth, scope and brilliance as he related very technical evidence of how the very evolution of the human brain over 120 million years influences those suffering PTSD and TBI. He communicated this complex information in such an accessible way and with humor and compassion that I found it truly engaging. I couldn't miss the comparisons of battlefield stress disorders with some of the same symptoms exhibited in the chronically stressed caregiver. Dr. Fricchione put it in context that was understandable and also hopeful. His funniest points were about the greater adaptability of slime mold (as compared to the human brain) and also, his opinion that the canine species was infinitely superior in unconditional love. (I think I agree with him about dogs! He even showed a video clip of his dog meditating - definitely a higher species!) I was vastly reassured that such brilliant researchers are bringing light to the issues we are facing. If you'd like more about this, his slide show may be found through a link on RCI's homepage for more Summit info. Without his charming quick wit and personality, it just isn't the same!
I was so impressed with the excellence of the programs and the caring compassionate hearts of the people involved. I met people from all over the world who are each working in their own way to support caregivers. There was such an atmosphere of hope, collaboration and cooperation and the convergence of politics, education, public support, private corporate sponsorship, recognition of excellence, community outreach and caring hearts -- I have never seen the like before. How could one not be inspired and uplifted?
One of the most recurrent themes in eldercare is the highly detrimental effects of boredom & loneliness. This is something experienced by most elders, whether living alone or in an assisted living or nursing home situation. It can even be a problem for elders living with family, depending on the family dynamics.
For family caregivers, this translates into a very difficult issue, creating conflict and emotional upheaval, and, of course, guilt, if their loved one is afflicted by loneliness. Yet there are some bright spots on the horizon.
One pioneer in innovative long term care reform is physician William H. Thomas. He is a self-described "nursing home abolitionist" and has been an advocate for eldercare reform for decades, creating the Green House Project nursing home concept, the Eden Alternative philosophy and training to "deinstituionalize" eldercare facilities by alleviating the "three plagues" of boredom, helplessness and loneliness. The Eden Alternative, which incorporates pets, gardens and children into the culture of nursing home care has an international following and is actively revolutionizing elder care. In addition, this Harvard-trained physician has written numerous books, one of which he turned into a one-man play which he performed to raise further funds for his visionary goals. He is a passionate speaker who champions honoring and valuing elders and aging with dignity, love & joy. He is truly an inspirational, enthusiastic powerhouse of a man! Click here view a video of Dr. Thomas and catch a bit of his spirit and commitment. And here's another recent video with Dr. Thomas visiting a woman in a nursing home and bringing such joy and delight to her with some beloved opera played through headphones for her. OK, hanky-alert on this one. I melted into tears because she reminded me so much of my own mother.
Dr. Thomas and his wife have also developed and built an entire village in Shelburne, NY centered around these concepts, called ElderShire: Creating Well-Being through Living in Community. The need for this kind of revolution is most apparent to anyone who has experienced the soul-less bleakness that is prevalent in the current culture of nursing homes as "storage" for the elderly. Dr. Thomas' lifework offers hope and vision, along with well-designed and researched programs and materials for creating healthier, happier aging in our world. Given the graying of our populations (in particular the baby boomer generation in the US) these are ideas whose time has come and we must implement these changes now to create a better life for both elders and the ones who care for them!
If you should need further evidence of the importance of banishing the "three plagues" of nursing homes, the article which appeared in Science Daily this week supplies it -- titled: Mindfulness Meditation Reduces Loneliness in Older Adults, Study Shows. The study offers verifiable data that the meditation known as mindfulness-based stress reduction (MBSR) reduced both loneliness and also markers in the blood for inflamation response, which are indicated in a host of physcial and neurological diseases, including heart disease, stroke, and Alzheimer's.
Won't you join me in supporting this vision and important culture shift in whatever way is possible? I cannot imagine a more worthy goal than to turn our reality of aging (and let's face it -- no one has found the fountain of youth!) into one of health and well-being and joy!
How many angels can dance on the head of a pin? Of course, there is no answer to that philosophical question. But, if you ask how many caregivers are dancing the complicated, unchoreographed dance of the challenges of caregiving, the answer is, by current consensus over 65 million. That is 65 million unpaid, family caregivers in the U.S. alone. To wrap your mind around that, it means that roughly one third of Americans are caregivers! One in three people in the U.S. are performing some duties to care for an elder or disabled person!
And I read an even more astounding projection for new cases of Alzheimer's internationally for the next 40 years (source: The Journal of Alzheimer's Disease) -- there will be an almost unimaginable, 115 million new cases of Alzheimer's-type dementia by 2050. This projection doesn't just boggle the mind, it makes it run away screaming in denial!
However, on a more positive note, there was a recent article synopsis in Science Daily, titled: Link Between Brain Insulin Resistance, Neuronal Stress in Worsening Alzheimer's Disease in which the authors of the study found some promising research on insulin resistance (diabetes) in the brain, which interferes with neuronal pathways. In essence, they are postulating that Alzheimer's is basically a metabolic syndrome, even going so far as to call it Type III Diabetes -- and that just makes sense to me. The more reading I do, the more apparent (to me) it becomes that it's all interconnected. Picture a giant, multi-headed underwater monster popping above the surface in different places so it appears to be separate, yet just beneath the surface, it is one. So (this is my own opinion, not the study) the obesity crisis, diabetes (insulin resistance), metabolic syndrome, inflammation and Alzheimer's may be different faces of one disease. If the monster only has one heart and it can be targeted, it stands to reason that would make it easier to defeat. This strengthens my own resolve to continue to explore and share information & self care techniques to help the caregiver slay the dragon of disease.
If, after further detailed neurological research, it turns out that all these are indeed aspects of one multi-faceted illness -- essentially a result of being out of balance, then it actually provides even more reason to use the tools that promote optimal wellness in our lives -- and ultimately, finding our balance in mind, body & spirit may be the healing, holistic approach that will provide keys to an eventual cure. I certainly find it hopeful in that it empowers us in our own healing process. That's good news that can perhaps make the alarming statistics fade away, replaced by a healthier, brighter future with far fewer dancing the caregiver dance.
Karen is a compassionate, enthusiastic student of life, who cared for her mother for 17 years. She brings her insights, compassion, experience and desire to share knowledge and healing to this ongoing conversation with others on the caregiving path. If you are caring for a parent, spouse, friend or other loved one this site offers sanity-saving tips, open-hearted self-care ideas, and an open forum for discussion, connection and sharing resources for the journey.
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