I have written much on this site about the power of music to unlock the memories of those with dementia, about my own experiences using live music with Alzheimer's patients and how music can improve the quality of life for the elderly (and their caregivers!). Refer to the iPod Project and Music and Memory posts on this site. Now, the long-awaited release of the documentary film about this exciting subject is happening across the country. I hope you have the opportunity to see the film in theaters, but if not, it will be available in October on DVD.
If you are a caregiver for someone who might benefit from the inclusion of personalized music, please visit the website www.musicandmemory.org for information about setting up an iPod or other MP3 player with music for your care recipient. You could make an incredible difference in their life and your own with this simple action. Take a look at the video trailer below and consider how good it would feel to bring one you love "alive inside" again with music!
Dr. Bill Thomas, creator of the Eden Alternative and ChangingAging.org website, blogs about his part in the Alive Inside documentary. You'll find his article in the DailyBeast Op-Ed: Treat Dementia With Music, Not Drugs is excellent.
Here is the trailer for the Alive Inside documentary (winner of the Audience Award at 2014 Sundance Festival): or visit the website for times and dates of showings at www.aliveinside.us
"There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers."
No matter which of the above four categories outlined by former First Lady Rosalynn Carter you may fall into, there is little doubt that your life has been affected by Alzheimer's -- either through a family member, friend or spouse. I won't bombard you with statistics, since they are all over the media airwaves, thankfully so! But I want to point out the there are over 65 million family caregivers in the US alone, mostly women, struggling along as the unsung heroes or sheroes, as the case may be, who deal with this disease or others, daily.
I want to let you know that they need your help. Yes, I'm talking to YOU! This is not a disease which will allow cheering from the sidelines. You're going to have to get down and dirty, and maybe take a few hard knocks for the team and almost definitely get out of your comfort zone. If you know anyone who is dealing with Alzheimer's, for heaven's sake, help them out!
Here are some things you can do:
1. Give them a huge hug and a warm, sincere "thank you" for their love and care. Let them know you acknowledge how tough it can be. It will make both of you feel better.
2. Offer practical help: a couple hours of respite care so they can go to a movie or shopping or take a nap. Do their laundry at your house and deliver it clean and folded. Take their children out for an afternoon of fun at the park or zoo to give those "sandwiched" between elder care and child care a break on one end of the caregiving spectrum. Find information about resources available in your local area for support, respite, help and give them to the caregiver with encouragement to help them follow through.
3. Take a walk to end Alzheimer's on Saturday, October 19, when the Alzheimer's Association is sponsoring a national fund-raising event. Click on the Alzheimer's Association link above to sign up. Get your company involved in matching donations raised (if you work for a company so inclined).
4. Help start a Memory Cafe in your community. Here's a "Toolkit" guide for this very worthwhile project and more information about how successful they are and how easy it is to bring better quality of life to those with dementia. There are currently about 80 Memory Cafes around the US, mostly grassroots local efforts, and so very helpful to caregivers and those with dementia. The concept is really taking off in the UK, with excellent support from the government. Here, unfortunately, we have to do it ourselves.
5. Be an advocate for creating dementia-friendly communities, so that caregivers can take their loved ones out to a restaurant, shop, church, or other public event without feeling the terrible stigma that tends to pervade uninformed environments. It isn't that people aren't willing to be dementia-friendly. They simply don't know how. Educate yourself, then educate others. See the excellent resource "Aging, Dementia, and the Faith Community: Continuing the Journey of Friendship" by John T. McFadden, M.Div., Chaplain at Appleton Health Care Center in Appleton, WI)
6. Practice the Mosquito Principle: "If you think you're too small to be effective, you have never been in bed with a mosquito." So, go ahead and be annoying to the decision-makers who can help to fund the end of Alzheimer's. Bother everyone you can think of and be very persistent in your efforts to help caregivers at the end of their rope, dealing with Alzheimer's. You CAN make a difference. Practice being mosquito-like. It can actually be fun, once you get the buzz, er, whine of it!
7. Introduce folks to this website which has a depth of resources, links, tips, advice and sanity-saving humor to help caregivers maintain their own well-being. There are helpful ideas about using music, meditation, aromatherapy, self-care, inspiring books, personalized playlists on iPods with www.musicandmemory.org, and so much more at www.caregiverwellness.biz.
8. Lastly, practice outrageous acts of kindness and caring for the people you love, and maybe for strangers, too. Use the Pay it Forward concept. Reach out and offer your support in big and small ways. Be vocal, be an activist, be a pain in the patooti, but be involved. If we are not, who will be?
"If music is such an important aspect of people's lives from the time they are born, why is it that it doesn't really occur to us, as a society, to provide people with music when they can no longer do what is necessary to provide it for themselves?
Imagine: You are lost in a world where words no longer make sense, when you only dimly know the faces around you, if at all (including beloved family members), and indeed where you may not remember your own past at all. Your entire world has shrunk down to a dim, lonely place behind a dark curtain of dementia or depression. Then, someone approaches you with a smile and friendly manner and places headphones on your ears and begins playing a song that you danced to with your sweetheart at your wedding. The music immediately connects you to that pleasant past memory, to who you were at that time, forming an acoustic bridge that can span what words or touch may no longer be able to do. Your eyes brighten, your toes tap, your lips curve in a smile and the words to the song come out of your mouth, which had forgotten how to speak. The light in your soul begins to peek out from behind the dark curtain. You may even kick aside your walker and do a little dance.
Is this fiction or fact? Well, in a 2008 project which provided 200 ipods to residents in four nursing homes in New York, it is fact. And Dan Cohen, then man behind the project and founder of Music and Memory, is seeking to make it fact for millions more! Mr. Cohen has pioneered the program Music and Memory with the goal of making personalized music the standard of care at all 16,000 nursing home facilities around the country. If the viral Youtube clip of Henry, a 94-year-old nursing home patient who is transformed in an astonishing "awakening" to the music on the provided ipod, is any indication, this is an idea whose time has most definitely come!
Mr. Cohen is using the power of the media to bring this transformative technology to all the elder care advocates, nursing homes, family caregivers, and others who can use it to transform sadness and isolation to toe-tapping joy and song with the implementation of a personalized playlist for people with dementia. Cohen and his team are at work on a documentary (Alive Inside - www.aliveinsidemovie.com) which features Henry and many others whose lives have been returned to them in part, by this power of their musical past and its impact on the brain. Music and Memory and the Alive Inside documentary have been featured on numerous media, such as NPR, New York Times, USA Today, CNN, MSNBC, ABC, and The Doctors, and have completed a successful campaign on crowdsource funding site Kickstarter.
Speaking as a daughter, a singer, and a caregiver, this is the most wonderful use possible of the gift of music to help our loved ones reconnect to their past, to bring them joy in the present, to make their lives so much richer and happier -- and all for the price of an ipod and some tunes and a caring person to put them together. The Music and Memory website has a wealth of resource material to allow you to get involved at whatever level you choose -- from how to set up a playlist for a loved one with Alzheimer's at home, to running a donation drive for gently used iPods which they will refurbish for use in nursing homes. Donate in whatever way feels right to you -- as a volunteer, by giving an old iPod to the cause, with financial support, and by spreading the word (and the music) on your social media such as facebook and twitter. This is a chance to positively affect literally millions of lives. Don't miss out!
I want to share with you an experience that touched me deeply and made me so much more aware of the power of music, both in caring for ourselves and our loved ones, and particularly in reaching those with illness that has taken them beyond the reach of words or other significant communication.
I am a singer, and often do programs in nursing homes or retirement centers. On one of these occasions, I noticed one of the residents had been wheeled in and her chair parked near me, but she was completely non-responsive, falling over to one side, head down and eyes closed through the whole first part of the program. I assumed that she wasn't really "there" and wasn't benefiting from the music. However, when I started to sing an old favorite hymn tune, "In the Garden", this woman straightened in her chair, lifted her head, opened her eyes and started to sing with me! This was such a remarkable transformation, that I was taken completely aback, and emotion choked me a bit as I grasped the implications. My assessment of her being "beyond" the activity and not present was completely wrong -- and not only did she participate, she also gave me a radiant smile as a reward!
I have found this same pattern repeated over the years, though not as dramatically as this one time, but there is a very definite and strong connection in the brain to music and this is now being researched more thoroughly. In fact, with Alzheimer's, people who can no longer communicate at all verbally, can still often sing and remember lyrics perfectly, as that is apparently in an unaffected part of memory. A recent study involved Alzheimer's patients being given iPods pre-loaded with their favorite music (according to family members and caregivers). The subjects of the study could play the music for hours, if they wished, and the results were nothing short of astounding. If this subject interests you, follow this story as presented in April on NPR at this link www.npr.org/2012/04/18/150891711/for-elders-with-dementia-music-sparks-great-awakenings
I also recommend Dr. Oliver Sacks' book, Musicophilia, for a wonderful look at the power of music and our brain. Check out his website at www.oliversacks.com/books/musicophilia
Sometimes, our tools as caregivers are all around us, simply waiting for us to recognize their power and healing properties. Experiment with your loved one, based on past experience, and fine tune your observations of their responses. You may find a treasure trove of ways to stay connected more deeply and beyond words.
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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