Kim Campbell, wife of legendary musician Glen Campbell, discusses her husband’s battle with Alzheimer’s and her efforts to provide comprehensive treatment to families afflicted by the disease.
Tell us more about your foundation, the Kim & Glen Campbell Foundation.
In 2011, Glen was diagnosed with one of the most horrific degenerative and terminal brain diseases on the planet, Alzheimer’s. Instead of hanging up his guitar and going into seclusion, he booked a world tour to do what he loved with the people he loved, and that meant making music. His world tour culminated in the award-winning documentary, “Glen Campbell: I’ll Be Me.”Two Grammys, a CMA Award, and an Oscar nomination. Not bad for a guy with Alzheimer’s!
Glen’s doctors all agreed that music had helped preserve his social skills and intellectual function much longer than expected. Indeed, current studies affirm that music has the potential to unlock forgotten memories, restore and rebuild neural pathways, alleviate depression, manage behaviors, boost cognition, and alter the brain chemistry associated with wellbeing, immune function, and stress reduction.
In honor of Glen’s musical legacy and his courageous journey with Alzheimer’s, I established the Kim & Glen Campbell Foundation to advance the use of music as medicine and to fund the research necessary to develop new forms of music therapy for the care management of those who have dementia and beyond.
In 2018, we awarded our first research grant to musician, neuroscientist, and author of New York Time’s Best Seller, “This Is Your Brain on Music,”Dr. Daniel J Levitin, to assist his work focusing on cognitive impairment, and embodied cognition in relation to music. His research has proven that listening to certain types of music can trigger the production of the same chemicals used in anti-depressants and sedatives like endorphins, serotonin, prolactin, oxytocin, and dopamine.
To quote Levitin, “Think of music as medicine with no bad side effects.”
Bringing the healing power of music as a therapeutic tool to families living with dementia is another one of the evolving aspects of Glen’s legacy that we will be paying tribute to at the Glen Campbell Museum and Rhinestone Stage, opening early 2020 in Nashville, Tennessee.
You must meet so many families struggling with caring for their loved one suffering from Alzheimer’s. What is the biggest piece of advice or words of wisdom you give them?
Keep your sense of humor. When on stage and experiencing a memory glitch, Glen would turn to his audience and ask, “Have you ever walked into the kitchen and wondered what you went in there for?” Then he’d smile his infectious smile and say, “I figured out how to stop that from happening: I quit going into the kitchen.”
This is just one of many examples of how humor helped our family deal with the devastation of Alzheimer’s. In 2020, Nelson Books is publishing a memoir I’ve written about my life with Glen. Along with providing an intimate perspective of our life together and how our faith in God helped us weather the challenges of living under a microscope, overcoming alcoholism and drug addiction, and battling Alzheimer’s, I share advice and tips that I hope will help caregivers keep their sense of humor and find moments of joy in their caregiving journey.
Take Care of Yourself and Stay Positive. Studies show the mental and emotional strain of caring for a loved one with dementia can cause depression, fatigue, stress, and illness, and that any of those factors can increase a caregiver’s own risk of developing dementia and take as much as ten years off a caregiver’s life. 30 percent of caregivers die before the one they are caring for does.
Losing Glen to this disease made me so deeply depressed and fatigued that I began to fear I might become the second victim of the disease. In order to be a good caregiver for Glen, I had to take care of myself. I decided to battle my depression with hope and positivity so I started a website called CareLiving.org™” to encourage, inform, and inspire caregivers to take care of themselves while caring for the ones they love.
Build a Home Care Team. No one can take care of someone with dementia all by themselves without sacrificing some of their own physical and mental health. If you’re caring for your loved one at home, enlist family, friends, or in-home health professionals to help.
Know when to join a Memory Care Community. When Glen entered the late stages of Alzheimer’s he never slept more than an hour or two, he wandered constantly, he forgot what common objects (like a toilet) were for, he lost his ability to communicate verbally or to understand language, and he frequently became physically combative.
When our neurologist concluded that we were no longer able to safely manage the complexities of Glen’s care at home, our family joined a memory care community. I say “our family” joined because it became my community, too. Now we were together with other families on the same journey in a safe and secure environment with professional caregivers. Along with access to 24/7 medical care, Glen benefited from increased socialization, great food, and specialized therapies such as music, art, horticulture, and pets. Had I known how great it was, memory care would have been my first choice, not my last resort.
Stay connected to your faith and friends. Pray a lot and trust God’s perfect timing. Join a support group and get involved in the fight to find a cure. By helping others, you are bringing purpose out of your pain.
Music as Medicine is one of the foundation’s key initiatives. Tell us more about your efforts in this space. What is your hope for this method in the future? How can caregivers implement this therapy into their care plan?
We hope the research we are funding through the Kim & Glen Campbell Foundation will lead to the development of more advanced music therapy programs that will enhance the health and wellbeing of people with dementia and reduce the need for pharmacological interventions for behavioral issues. We are currently conferring with Arthur Kelm, the VP of infrastructure & technology for Universal Music Group, and Dolby Laboratories about creating a Dolby Atmos Immersive Listening Experience as a possible therapy. In addition to advanced therapies with licensed music therapists, there are a growing number of voice control apps that are easy to use at home.
You are a very strong advocate for caregivers, both family and professional. What kind of support or resources do they need the most?
The financial cost of in-home care, day care, and assisted living memory care is staggering. I have lobbied in Washington with groups like US Against Alzheimer’s for legislative bills that would help ease the financial burden on families caring for a loved one with dementia or participating in clinical trials and I continue to inform and encourage caregivers through my speaking for American Program Bureau.
Cognitive diseases have become epidemic within our population, and until there is a treatment or a cure, we baby boomers need to plan for how we would want to live should we need this kind of care. With the knowledge I’ve gained touring hundreds of memory care communities around the country, my studies in Interior Design at UCLA, and knowing first-hand what worked for Glen, I am now conferring with investors and developers about how we can better design memory care communities to support cutting-edge therapies that improve the quality of life for people with dementia and their families.
The goal is to make care affordable for those who need it. I look forward to a day when health insurance companies supplement the cost of care during the late stages of the disease. After all, it is as fatal brain disease that often manifests behavioral issues that are too hard and potentially too dangerous to manage at home.
Professional dementia caregivers must have a heart full of love and compassion to do what they do, and those qualities need to be nurtured with the right training and a supportive work environment. Better pay is also deserved because of the physical demands and high stress level of being part of a workforce that cares for people who are cognitively impaired, some of whom have complex behaviors and can be combative.
What advancements in Alzheimer’s research and neurology in general are you most excited about?
There are hundreds of clinical trials going on around the world with many brilliant minds behind them. Every time I meet with a scientist involved in one of these trials, I am encouraged by their passion, determination, and optimism.
Neuroscientists and pharmacologists had high hopes for drugs that would work to prevent the build-up of amyloid-beta proteins and neurofibrillary tangles that are associated with Alzheimer’s; unfortunately, none of these have worked. It’s been a rather spectacular disaster.
What we can do right now is more research on which therapies will help individuals with Alzheimer’s and their loved ones cope with the disease. What are the things we can do to reduce stress and anxiety for all concerned? To help these individuals reconnect emotionally with their own memories, themselves, and their families? Research in music as medicine has shown us a better way, and that’s what I and many scientists, such as Dr. Daniel J. Levitin, are most excited about. There is still much work to be done. We need to know how these therapies work and why they work in order to convince caregivers and insurance companies to adopt them. And we need to invest in translational research, taking the findings from the research laboratory and putting them into meaningful programs and interactions with older adults, whether at home or in memory supportive communities.
Editor’s note: Kim Campbell is the keynote speaker at the American Neurological Association’s 2019 Annual Meeting in St. Louis, providing the caregiver perspective to the nation’s leading academic neurologists and neurosurgeons.