Be physically active. The adage, “use it or lose it,” definitely applies to our physical condition. There is abundant research about the loss of muscle strength after physical inactivity. Besides staying active for muscle strength and mobility, doing physical things, such as sports, hobbies and walks can provide fun and stimulation.
The term Blue Zones has been used to describe places where people live long and healthy lives. What exactly does it take to live a long and healthy life? What is the science and the secret behind longevity and life extension? In this series, we are talking to medical experts, wellness experts, and longevity experts to share “5 Things You Need To Live A Long, Healthy, & Happy Life”. As a part of this series, I had the distinct pleasure of interviewing Karen Love, CEO, Dementia Action Alliance.
Karen Love is a gerontologist and a nationally known expert in aging supports and services with a specialty in dementia care. She was a long-term care administrator for many years. For the last 17 years, Ms. Love has worked at the intersection of research, policies and practices that enhance the well-being of individuals living with dementia and for those who care about and for them. She co-founded four national aging advocacy organizations (CCAL-Advancing Person-Centered Living, the Direct Care Alliance, the Center for Excellence in Assisted Living, and the Dementia Action Alliance). Ms. Love is the Alliance’s Executive Director.
Thank you so much for joining us! Our readers would love to “get to know you” a bit better. Can you tell us a bit about your ‘backstory’?
During my senior year in high school, I worked at a local nursing home. I really enjoyed the elders but wondered what kind of life they were having living in what was basically a medical institution. I was an envelope-pusher even back then and would bring in some chocolate occasionally for the 92-year old who longed for some or sneak a bath in for the resident who hated showers. I studied to be a speech and language pathologist but was drawn to long-term care administration.
My beloved paternal grandmother spent her last years living in what was considered an upscale nursing home but nonetheless operated very institutionally. I had three young daughters at the time, and would load the car with tricycles, piano music and other things when we visited her. She loved being around her great granddaughters doing everyday things. That time in my life coupled with the experience working in a nursing home during high school catalyzed a deep desire to impact change in long-term care from places that looked and operated more hospital-like than places where people lived.
I became a long term care administrator and managed communities that were homey, caring places to live and supportive places to work. My guiding philosophy was the golden rule (treat others as you would want to be treated). I learned later that researchers call this ‘humanistic principles’. Residents living in long-term care communities and the staff working there thrive in a humanistic operational environment. I could not understand why this approach wasn’t the norm and so I became involved in national public policy work. This led me to co-founding a national consumer advocacy organization in 1996 that is currently known as the Dementia Action Alliance.
Humanistic principles are embedded in the core values of the Dementia Action Alliance: “Nothing About Us Without Us;” the positive and transformative power of meaningful engagement and empowerment; that dementia is a disability that requires accommodations and supports for changing abilities; and accurate understanding about living with dementia is essential because stigma and misperceptions about it have negative and damaging effects on the well-being of individuals living with dementia and for those who care about them.
Most people are surprised to learn that when people are diagnosed with a form of dementia, they do not receive information about how to live with and manage the complex symptoms. They are left to figure this out themselves. DAA led the development in 2022 of a 428-page ‘how-to’ manual that includes information provided by 48 people living with dementia, care partners, and leading dementia specialists. “Pathways to Well-Being with Dementia: A Manual of Help, Hope and Inspiration” is a comprehensive, free resource of helpful, practical information grounded in science that ensures no one has to figure out how to live with and manage symptoms of dementia alone.
Can you share with us the most interesting story from your career? Can you tell us what lessons or ‘takeaways’ you learned from that?
While humanistic principles provided a great general operational framework for long term care communities, this was not sufficient to engage and nurture our residents living with dementia. They needed some additional structure that was eluding almost everyone in aging supports and services. I had an epiphany one morning in the 1980’s while dropping my young daughters off at their Montessori classroom. Children of various ages were all happily busy and engaged doing things themselves or in small groups. With advice from the head of my daughters Montessori school, we began applying Montessori-based principles in the long-term care community I managed to better connect with and engage our residents living with dementia. The outcomes were rewarding — both for them and us.
This was a novel approach and I became somewhat known for using Montessori-based principles to enhance the lives of residents living with dementia. One day in the late 1990’s I received a phone call from a colleague who said I was being summoned to speak with Lena Gitter at her Washington, DC retirement community. “Who is Lena Gitter,” I asked? Just come, said the colleague. I arrived and was escorted to the community’s chapel. Sitting in a wheelchair in the middle of the chapel behind a large, sun-lit stained glass window sat an elderly woman wearing a hat who pointed me to sit in a nearby chair. In heavily accented English, Lena Gitter asked if I was the person using Montessori for dementia. She fired off a number of other probing questions and then threw her hatted head back, laughed and said what sounded like, “Es gut!”.
Turns out this Bella Abzug lookalike had studied under Maria Montessori, MD in Vienna, Austria where she had established a private school. Lena brought knowledge about Montessori education with her when she and her husband immigrated to the U.S. in 1938 to escape the takeover by Nazi Germany. She felt somewhat proprietary about Montessori and was concerned about how I was applying it. Thankfully I got her seal of approval. In fact, Lena loved the idea that the principles of Montessori could be used helpfully for others. Unfortunately, I met Lena towards the end of her life but immensely enjoyed our brief friendship.
I learned to think outside the box from this experience.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful for who helped get you to where you are? Can you share a story about that?
Elma Holder, one of the luminaries in the national culture change movement, co-founded a national consumer advocacy organization, the National Citizens Coalition for Nursing Home Reform. Elma was one of the leaders who successfully engineered what became the federal 1987 Nursing Home Reform Law. She cut her advocacy teeth working with Ralph Nader and Maggie Kuhn (founder of the Grey Panthers). We both lived in the Washington, DC metro area, and, luckily for me, Elma took me under her wing. She taught me how to be an effective advocate when I co-founded a national advocacy organization and opened many doors through her introductions.
Elma wasn’t all work though. When out of town for work, for instance, she always made time to enjoy the local environs. I saw museums, art galleries, and local sites I wouldn’t have thought to take time to see. Elma worked hard but also took the time to take care of her well-being. For her this meant spending time with people she was close with and doing fun things. I learned many valuable life lessons from her.
You are a successful leader. Which three-character traits do you think were most instrumental to your success? Can you please share a story or example for each?
I think the three character traits that have been instrumental to my success keeping a non-profit advocacy organization running for 26 years are integrity, fortitude and gratitude. I’ve found integrity to be my north star when difficulties arise. The right thing to do isn’t always the easiest or quickest way to handle something. Rarely have I experienced regret staying the course and doing the right thing.
Fortitude has been important with a non-profit advocacy organization. It is hard work and challenging to raise funds to keep in operation. Fortitude has been a steady companion when I needed to muster the strength, courage, or energy to do something needed.
Lastly, is gratitude. I wasn’t born with an orientation to gratitude, but fortunately have come to realize how foundationally important this trait is to undergird my outlook on life. An attitude of gratitude keeps me positively focused and thankful. Someone once said to me that attitudes are free — you might as well choose a grateful one.
I’ve been blessed to have as DAA’s co-founder, Jackie Pinkowitz, a person whose character traits are beyond reproach and focused on integrity, fortitude and gratitude. I am deeply grateful and appreciative for her stewardship and friendship!
Based on your research or experience, can you please share your “5 Things You Need To Live A Long & Healthy Life”? (Please share a story or an example for each)
In the manual DAA developed last year, “Pathways to Well-Being with Dementia,” the items below are identified as ‘pillars of well-being’ because of the degree of importance they have on a person’s well-being whether you are living with dementia or not.
- Have and nurture close and meaningful relationships. This is the most important aspect of my well-being and, hopefully, health and longevity. My family and close friends are the most important part of my life. Relationships don’t happen automatically though and need time and effort to maintain. I am blessed to have someone who has been a dear friend my entire life. Our fathers were roommates in college for four years and themselves were lifelong friends. While Kathy and I are close friends, many of our interests are different and our lives have taken different turns. I am divorced. For example, she will be celebrating 50 years of marriage later this year. She loves camping; I do not. We do share many fundamental values, such as our deep love and commitment to our families, spiritual faith, and both of us are altruistically-oriented. Several years ago, I fell and ended up in the hospital for a couple of days. Late in the evening while I was still in the emergency department, Kathy showed up with an overnight bag so she could keep me company. That’s a good friend!
- Stay engaged in fun and interesting things. Luckily, I have four active, creative and spirited grandchildren who are always coming up with interesting things to do, such as picking up heavy rocks to find bugs, watching videos about the world’s most venomous snakes, and jumping on a trampoline. I get to do these interesting things because I am open to the opportunities. Being engaged in fun and interesting things is mentally stimulating as well as being emotionally beneficial. I’m not a fan of bugs and snakes, but I love how happy learning about them makes my grandchildren. I want to keep learning and growing lifelong.
- Be physically active. The adage, “use it or lose it,” definitely applies to our physical condition. There is abundant research about the loss of muscle strength after physical inactivity. Besides staying active for muscle strength and mobility, doing physical things, such as sports, hobbies and walks can provide fun and stimulation.
- Limit stress and stressful experiences. Stressful situations cause the central nervous system to respond by releasing stress hormones, such as adrenaline and cortisol, that prepare a body for action, including increased heartbeat rate, tightening of muscles, and increase in blood pressure. We all experience occasional stress, but experiencing stress regularly is not healthy as it disrupts the immune system. A weakened immune system can leave people vulnerable to illness. Life includes stressful times, but we can be aware of it and limit exposure to things that cause stress.
- Make spirituality a priority. Spirituality can be experienced in many ways. For some, spirituality involves participation in a structured religion. For others, spirituality is experienced in nature, or through music, visual or performing arts. Experiencing spirituality is transcendent and takes us out of a focus on ourselves. I experience spirituality in nature. It can be a sunset, a walk on the beach or through a forest, or a beautiful rock formation just to name some. I moved to Charlottesville, VA so I could live close to grandchildren, but an added bonus is the area is surrounded by beautiful mountain ranges.
Can you suggest a few things needed to live a life filled with happiness, joy, and meaning?
The items noted above are important supports for well-being and can provide opportunities to experience happiness, joy, and meaning.
Thank you for the interview. We wish you only continued success!