Transcription of William Kirkpatrick for the show Music & Memory #199
Lisa: As a physician who has patients suffering from dementia and also family members who are caring for these patients and also as a woman who has a grandmother who suffered from dementia, I’m very interested in the topic of dementia and Alzheimer’s. Today we have with us Bill Kirkpatrick, who is the program director for the Maine chapter of the Alzheimer’s Association. Bill received his Master’s of Social Work from Boston College in 1978 and a certificate in bioethics and health policy from the Neiswanger Institute of Bioethics at Loyola University in 2010. He has over thirty years experience in health and mental health. He lives in Brunswick. Thanks so much for coming down and speaking with us today.
Bill: Thank you. I’m very happy to be here.
Lisa: Now, tell me a little bit about your interest in this. If you have more than thirty years of experience in health and mental health, you probably could’ve chosen any number of places to focus your interest but you’ve chosen this one why is that?
Bill: Well, my wife I and moved up to Maine a little over three years ago. Part of our preparation was finding work. I had recently taken a early retirement package from my previous work, which was in a health system in Rhode Island. The one thing I did know was I did not want to work in an acute care setting. So much of what happens I think in life is timing is everything. There were only two jobs available one was in a hospital and the Alzheimer’s Association. Originally, it was the manager of education. The more I learned about the association and the more I learned about the mission it just seemed like a perfect fit my interests and my passion. It turned out to be absolutely that. It’s a wonderful organization. Ironically, again, it was almost chosen for me I think. It turned out to be a great connection, so I’m very thankful in that.
Lisa: What has your experience been with the diagnoses of Alzheimer’s itself and the caregivers of people who have Alzheimer’s?
Bill: Well, by virtue of working in the social work field for thirty years mostly in health settings I’ve worked with, in the acute care setting, people with Alzheimer’s or another form of dementia. I served as the social worker in a memory loss clinic at a hospital in Rhode Island for a period of time. That’s really where I started to get a little bit more of an immersion in what the impact was beyond the diagnoses on families and people with the disease. In all settings in the hospital I had some exposure or some connection in working with people. It really wasn’t until I started to work for the association now that I was able to do much more of a deeper exposure or research into what it means to have the diagnoses and what it means to live with dementia and the long-term impact on caregivers and families.
Lisa: There are other forms of dementia other than Alzheimer’s. There’s small vessel disease. There’s other brain issues. Does your chapter of the Alzheimer’s Association do you deal with patients and caregivers who suffer from those diseases as well?
Bill: Yes, we do. The formal title of the association is the Alzheimer’s Association and Relate Dementias. My understanding is that there are over seventy types of dementias that have been identified. Alzheimer’s is the most common form, represents about 60-70% of all dementias. In this country over 5,000,000 people are living with Alzheimer’s disease. In Maine it’s about 26,000 people. If you combine the other dementias, in Maine it’s another 10,000 people who are living with another form. Vascular dementia is the second most common type and many folks end up being diagnosed or living with both, which we refer to as a mixed dementia. Then there are other forms such as Frontotemporal dementia, a very complex disease, Wernicke-Korsakoff’s dementia, Lewy Body dementia, Parkinson’s dementia. All of those folks are served through the association. We’re able to provide some education and resources for anyone who’s living with any type of dementia.
Lisa: Going back to my own family situation, my grandmother was quite old when she passed away. She didn’t have dementia until the very, very end of her life. That’s the way we often think of dementia. She was in a nursing home. My mother was around to care for her. My uncles were around. Our whole family was able to collaborate in that way. Then I also have had patients recently who are relatively young. In their seventies they are dementia. They need to move from their home to maybe the home of a child to be cared for in the longer term. Tell me what your experience has been with that and what services you are able to offer through your chapter?
Bill: Well, we understand Alzheimer’s disease in a series of stages. There are seven discrete stages, but we unusually think about them in terms of early, middle, and late stage. The typical picture I think that many people have is of the older person in a wheelchair in a nursing home sort of disconnected and not able to provide care were themselves. That’s certainly true but that’s only one aspect. We emphasize early detection. We emphasize that people need to pay attention to the signs that may mean that someone is having early signs of dementia. One example of a program or a service that we provide is education around Know The Ten Signs Early, Detection Matters. Our goal is to reach people earlier for several reasons one is that there is information and resources that they can take advantage of. People can begin to plan for their future and participate in that planning ahead of time.
Because this is a progressive disease that ends in death, there’s a lot of preparation and planning and a big part of what we do through the association in our helpline services is to help people anticipate what will happen as a result of progressing through the stages over the number of years so that includes legal and financial planning, safety planning, paying for care at home or in a long-term care facility, providing care and support for care partners and caregivers. That’s a huge issue, a huge impact on families. The stress of caring for someone with dementia is enormous so lots of our services and emphasis is on providing support for the caregivers. It’s a matter of trying to tell those stories and raise concern and awareness.
Early on in my professional career I worked on an oncology unit thirty plus years ago. In those days, similar to what’s occurring now with Alzheimer’s, there’s a huge amount of stigma and fear that kept people away from getting a diagnoses, kept people away from getting treatment. That’s certainly changed over many years. We see very significant success stories in terms of treatment for many different types of cancers and HIV for example. Alzheimer’s still carries with it a huge burden of stigma and fear that does keep people away from treatment. A big part of what we do is to try to raise that awareness and provide hope and access to services. Through the events like the Coral Art Society or other programs that gives us that chance to be out there and connect with people earlier and earlier. That’s hopefully where we’re going to continue to go.
Lisa: The Coral Art Society event was pretty special something that hasn’t been done here in Maine before?
Bill: No. I understand that was the first production in Maine of that work. We were very fortunate to have the creator of the Alzheimer’s Stories, Robert Cohen, with us on May 9th for the event. Prior to the event there was a slide show. There were some invitations sent out to families to send pictures in to be able to display their loved ones who are either living with dementia or have died from Alzheimer’s or another form of dementia. The panel included Robert Russell, who is the Coral Art director; Robert Cohen; Tom Prescott, who’s sister Judy Prescott wrote a beautiful work of poetry called Searching for Cecy, which is poems and artwork in honor of their mother who died of Alzheimer’s. She unfortunately, had laryngitis that night, so Tom was there reading poetry and that was incorporated into the musical work. Then there was the production that was really very special. A very powerful way to tell the story of Alzheimer’s disease.
Lisa: The interesting thing about doing work with the Coral Art Society about music is that we know that music actually does do something with the brain that actually brings back memories in some ways. You’re doing something that is raising awareness, but you’re also doing something that is helping the people who actually have dementia.
Bill: Absolutely. One of the other panel members was Kate Beever, who’s a music therapist, and she was able to articulate very clearly that power of music and that in many ways music is one of the last connections or last abilities that people have probably right up to the end of their life. It is amazing to see the impact that music has on all forms on the person’s ability not only to get connected with more of those remote memories but get in touch with happiness and joy and that connection with people around them. There are some very interesting … More and more programs out there that are using music therapeutically to help stay connected with people in the later stages of the disease. I’m not a music therapist, so I can’t talk a whole lot about the nuts and bolts of that. It’s something that we hear all the time, that and artwork. Any creative arts really is very therapeutic and helps provide that positive connection with people throughout the disease not just in stage of course but throughout the disease.
Lisa: We’ve heard about right brain/left brain and how one has to do with the more creative aspects of ourselves one is more organizational. Is there some relationship between dementia and right brain/left brain? Is that brought out by the music itself when it’s played or heard?
Bill: Well, my understanding is that there is no one site in the brain where music resides per se. I’m not an expert on this. That’s it’s more of a global phenomenon if you will. That music also allows access to more remote memories or our pleasure because of the context of music in people’s lives. There’s a very powerful documentary called Alive Inside which tells the story about a project started by a social worker down in a long-term care facility in Long Island I believe in which he provided iPods to residents there with advance stages of dementia. Music that families told the social worker this resident really loved in their life were loaded onto the iPod. It’s really remarkable to see the almost immediate connection when that iPod is turned on and there’s this music being played.
I think the reason why it’s accessible even late into the disease is because it’s connected at different parts of the brain in different ways. It’s the creative part certainly, but it’s also connected to emotion. An emotion, whatever that emotion is, often lasts right to the end probably to the end of the disease as well. That has real relevance for providing training for caregivers both professional and family caregivers because while cognitive memory fades emotional memory does that fade. We do a lot of training around the hippocampus, which is where early memory is formed, and the amygdala, which is the emotional center of the brain. That we can’t rely on memory for caring for people or connecting but we can rely on that emotional connection and to pay attention to that throughout the disease. Music is one way to tap into that emotional side life and emotional side of communication.
Lisa: My observation is that there’s not … Right now the therapies that we have, medical therapies, are not as useful as hopefully they one day will be. We actually need to rely on therapies like music and art to help people and the people who are caring for them.
Bill: Exactly. We do have some drugs, some medications, that can help symptomatically. Alzheimer’s disease is a fatal disorder, fatal disease. It’s now the sixth leading cause of death in this country and in Maine. It’s on the top ten list. It’s the only one that does not have a cure nor any disease modifying treatment. The drugs we do have do help some people for a period of time with improving memory, maybe improving or reversing some of the social isolation that occurs, but more drugs are needed and that’s the connection to research of course. While those medications are helpful for some people, it is other forms of therapies that are really needed such as music or other kinds of creativity. It’s way that caregivers also understand how to maintain that communication and understand behavior as communication. If language fails, we need to rely on other forms of staying in contact or communication with people. There is a lot of knowledge and aspects of that delivery of care that’s something also that we provide.
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Lisa: One of the things I remember about my grandmother being sick was the loss that I felt that my mother felt that this was a person who had been so vibrant. She was the oldest in a large Irish family, south Boston, just spitfire. One of the first woman in her family to become educated, college education. She was a nurse. She was stationed out of Fort Williams where she met my grandfather. To lose that person and lose that woman and then even to not be able to introduce that woman to my children, it was so insidious. You didn’t really know that one day you would have Nana and then the next day she wouldn’t be there anymore. You didn’t even know when it was time to say goodbye. I’m wondering if music or some of these other therapies that you’re describing can somehow be of comfort, somehow be soothing?
Bill: I think they can. It’s certainly a way for children or grandchildren or others to stay connected or have that connection and see the impact, the positive impact on the person with dementia. That loss that you described is something that is pervasive, is insidious. I think it’s a process that takes place throughout progression of the disease. It’s not something that happens at a moment in time and then it’s gone. It’s a continual process. There is that theme of loss. Any way that we are able to help families including children and teens staying connected with their parents or their grandparents who are living with the disease is very powerful and very therapeutic for them as well. We would be available to help families, including families with younger children, to find ways to maintain that communication or stay connected with the person living with dementia and deal with the loss and depression and concerns that they’re feeling.
Lisa: That sounds like a very valuable resource. I’m also thinking about this early detection that you’ve described because I know that patients who come in to see me who have a family member with Alzheimer’s they will often say, “I just can’t find my keys. I can’t find the name of a person that I have met once before on the street.” We’re not talking about that memory loss. We’re not talking about if you can’t find your keys. I mean most of us have those moments. It’s if you don’t remember that you had keys. It’s much bigger things than that. To be afraid to bring this up to your doctor I think is … Well, I would like people who are listening to know that we can maybe help with some of those fears.
Bill: Exactly. One of our signature education programs is part of our early detection alliance or initiative across the country and that’s Know The Ten Signs Early Detection Matters. In that program and also through our helpline as we talk to people who are calling who might have some worry about their memory or talking about those signs we want to differentiate those things that happen to all of us as a result of normal aging and the signs of potential dementia that is not part of normal aging. That’s a great example, misplacing an item or forgetting a name, happens to all of us. We’re all slower cognitively and physically as we grow older. It’s really those changes that occur that begin to interrupt daily life and interrupt the person’s ability to live their life normally.
The early detection part of that is there are lots of reason why memory might be impaired not necessarily Alzheimer’s disease. There are lots of medical conditions that are life threatening that can cause some of the symptoms that we see. Please go to your physician and check it out and be able to get the help and find out whether, in fact, it is something that’s momentary or normal ageing or a red flag of something else. We also advise family members to go with them. Particularly because if we’re talking about memory impairment, it’s important that the practitioner, the physician or other practitioner, get the world story, the whole history. There may be gaps in that person’s ability or knowledge or memory of being able to share with them what’s been happening and how long it’s been happening. Folks usually start with their primary care physician or practitioner and then move onto other diagnostic work ups if necessary.
Lisa: What are some of the ten things for people to be paying attention to? I’ll just send people over to your website too to learn all of them. What are some of the signs?
Bill: Well, memory loss is the signature sign of Alzheimer’s disease and that’s because the part of the brain that is responsible for taking in newly learned information is first effected by the disease. It’s changes in the ability to plan or organize, some language problems, some word finding problems, and eventually some difficulty in writing, visual spacial changes in relationships. It’s always important to check out our vision, but what I’m referring to is the part of the brain that’s responsible for taking in input and interpreting it in terms of vision that begins to be affected, balance and equilibrium, difficulty with calculations so balancing the checkbook for instance may be impacted, judgment and reasoning are impacted, mood and personality are impacted. There’re a number of these that can be again red flags for another condition may be dementia may not be. We urge people to check it out and not be afraid to talk about it and go see their physician.
Lisa: As you’ve pointed out there are some things, some medical things, that can cause memory or other issues and, in fact, some of them may be reversible. I mean there is something called delirium. People can come in and have a urinary tract infection especially if they’re older or some other type of infection and actually be delirious, and we can actually fix that. They aren’t going to progress into dementia. That’s thing should always be checked out. Tell me how people can find out more about the Maine chapter of the Alzheimer’s Association?
Bill: We have a toll-free number for immediate access and that’s 1-800-272-3900 and our website is alz.org/maine and that’ll get everyone to the chapter. Calling that eight-hundred number twenty-four hours a day gets people immediate access to master’s prepared clinicians who can provide information, referral, resources, but also care consultation which is just spending the time to talk about their respective situation and help them begin to plan. It’s a free service. It’s an unlimited service. We don’t bill anybody. We’re a voluntary healthcare organization. It’s here for people in Maine to get access to right now.
Lisa: Well, I’ve actually learned quiet a bit today. That’s really wonderful that you were able to come in and speak with us. I’ve been having a conversation with Bill Kirkpatrick, who is the program director for the Maine chapter of the Alzheimer’s Association. Thank you so much for all the good work you’re doing for people here in Maine. This is a tough, tough thing that you’re working on. I’m sure that what your organization is doing is very important.
Bill: Thank you very much. Thanks for this opportunity to talk about it.
Lisa: You have been listening to Love Maine Radio show number 199: Music and Memory. Our guests have included Andrea Graichen and Bill Kirkpatrick. For more information on our guests and extended interviews visit lovemaineradio.com. Love Maine Radio is downloadable for free on iTunes. For a preview of each week’s show sign up for our E-newsletter and like our Love Maine Radio Facebook page. Follow me on Twitter and see my running travel food and wellness photos as Bountiful 1 on Instagram. We’d love to hear from you, so please let us know what you think of Love Maine Radio. We welcome your suggestions for future shows. Also, let our sponsors know that you have heard about them here. We are privileged that they enable us to bring Love Maine Radio to you each week. This is Dr. Lisa Belisle. I hope that you have enjoyed our Music and Memory show. Thank you for allowing me to be a part of your day. May you have a bountiful life.
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