Person-Centered Approach to Alzheimer’s Part 1 - Encore

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hello to all of you who have tuned in to listen to this episode of The Truth Lies in Alzheimer's Show. I'm Lisa Skinner, your host, and I'd like to shout out a very warm welcome to all of you who have joined us here today. I really appreciate you taking the time to listen. The purpose of this show is to talk about every aspect of Alzheimer's disease and dementia. That's going to include the good, the bad, and yes, the ugly. My goal is to get to the truth, dispel the lies and myths, and unveil what I call The Secret Faces of Alzheimer's Disease. This way you'll have a better understanding of what it's truly like to live with a brain disease like Alzheimer's. My hope is to zoom outside the paradigm of people believing that it's exclusively a memory loss condition and to shift their understanding of just how dramatically this disease impacts the lives of those who have it as well as their caregivers and family members. Well, for that matter, anybody who is involved in the life of a person living with dementia. My story started almost 50 years ago when my grandmother began displaying some very strange behaviors. She insisted that there were birds living in her mattress and that they would come out at night and peck her face. She insisted that she saw rats running along her walls and that they were going to invade her house. She talked about the men who were trying to break into her home to not only steal her belongings, but they were there to harm her. Well, it turned out that this was the beginning of our 20-year journey with my grandmother and her Alzheimer's disease. So, fast-forwarding a few years, I became a behavioral specialist, and I have spent the last 30 years helping family members and caregivers understand the devastating effects of this disease so they, too, could learn how to best live with the unexpected surprises that emerge day to day. That way, they can spend time focusing on what truly matters which, of course, is spending quality time with their loved ones. And I am here for you now. I've also authored several books on the subject, written a training program, and believe it or not, have painfully watched 8 of my own family members fall prey to one of the brain diseases that causes dementia. I'm also a certified dementia care trainer through the Alzheimer's Association, and I'm a certified dementia practitioner. I have come to realize, and you probably do too if you're on this Alzheimer's disease journey, that there are so many aspects of living with dementia that are unexpected And they surface out of nowhere at any time. Well, these are what I call the hidden or secret faces of Alzheimer's disease. And as many of you know, they do show up unannounced and are completely unpredictable. And that's why it's so important to be prepared for anything that emerges on this journey. I believe that knowledge is power, and I am here to arm you with that knowledge so you, too, will have the power to negotiate the many challenges you will face having a loved one or while caring for someone with dementia. You know, living with dementia is unlike anything anybody could ever imagine. Think of it like falling into a rabbit hole like Alice in Wonderland and entering a world unlike anything you've ever known, one that is completely unfamiliar to you. Well, that said, it's equally important to not only understand what will occur on a day-to-day basis, but why these things occur. What is happening to the person's changing brain as they progress through the various stages of Alzheimer's disease? And that is what I'm here to offer you, a better understanding about what living with Alzheimer's disease is really like. And only then will you be prepared to— for what challenges lie ahead. And you know what? That is the key to being prepared and to not being caught off guard. So on today's episode, I want to talk to you about what is called the person-centered approach to care. What exactly is it and why is it important? I've been practicing the person-centered approach to care for decades now, and I want to tell you that I feel very, very, very fortunate that I was introduced to it and learned about it and implemented it early on in my career as an elder care counselor. It is so important, and it really— from what I've seen and personally witnessed, it has made a huge difference in the quality of life that people experience living with Alzheimer's disease and related dementia. So, relax and sit up in your chair, and I am going to explain to you why I firmly believe in this approach to care and why it's important, what I've discovered practicing the person-centered approach to care. So, it means that knowing what is important to an individual and working their life and care plan around the individual's wants and needs instead of focusing exclusively on the disease. In other words, just to focus exclusively on the symptoms that they're displaying, but get to know the individual person on— in a very detailed and personal level. This includes offering choices and benefits, as well as care options and strategies based on a person's personal wants, needs, likes, and dislikes. This approach has shown to fulfill a patient's needs beyond their disability or ailment, as well as improve their quality of life, And it's extremely important when caring or communicating with a person living with dementia. For them, it demonstrates respect that they have their own views on what's best for them, that they have their own values and priorities in life, and that maintains familiarity that is such a crucial part of their everyday lives. These care plans and strategies are adapted to their expectations and preferences and not the other way around. By doing so, it enables the patients to retain their dignity and autonomy during an already challenging time. So these are the 4 principles of person-centered care: to treat people with Dignity, compassion, and respect. The patients often lose their independence when they enter care, which puts their dignity at risk. However, person-centered care enables a person to maintain their dignity by respecting their wishes and treating them with compassion and empathy. To fulfill this principle, patients must be allowed to own their own thoughts, feelings, opinions, beliefs, and values because they don't just suddenly become invalidated by their care needs. Respecting their personal qualities helps them feel validated and cared for much more wholly, both physically and mentally. The second principle is providing them with coordinated care, support, and treatment. So it's very important to record their personal information into a journal or a care plan and share it with other caregivers. The caregivers or family members should communicate this information with one another to build a shared understanding of how to deliver this person-centered care. The third principle is to offer personalized care, support, and treatment. This principle is truly at the heart of a person-centered approach to care, and it will enable caregivers to understand what works for each individual person based on specific You've heard me say in previous episodes that if you've met one person with Alzheimer's disease, guess what? You've met one person with Alzheimer's disease. And as I've stated before, it's because every single person experiences the stages of the disease and progresses through the disease in a little different way. So, if we have detailed information about the people, we can avoid so many stressful situations by being prepared with the tools in our toolbox that we will have ready based on their personal information. The last principle is to enable caregivers to recognize and develop a person's strengths and abilities so they can live independent and fulfilling lives. And trust me, I have seen this principle do exactly that. Providing person-centered care involves the patients in decisions and helps them take action to support themselves whenever possible. This helps them to develop their own capabilities and an understanding of how to look after themselves and to stay as independent as possible through each stage of their disease. Now, this definitely becomes a challenging fine balancing act as they continue to decline. But trying to force patients to do more on their own can surely cause anxiety and frustration. On the other hand, too much involvement makes them feel irrelevant and useless and can literally turn them into an invalid. So, why is this important in providing a more meaningful life? Well, the people suffering from Alzheimer's disease and related dementia will feel more comfortable and confident. They'll have more trust in you that you're doing what's best for them, and therefore they will be less resistant to your help. This, of course, will make any situation easier for both of you. You will meet their emotional their social and practical needs, which ensures that they maintain a higher quality of life. You can support those who may not be able to directly communicate their wants and needs. Person-centered care helps you find suitable ways to communicate with them and to help them to communicate with you, especially when they can no longer articulate. Articulate their wants and their needs, and that will maximize their quality of care. Now, family members, caregivers, and people living with dementia deserve to live a fulfilling life and feel positively despite the challenges and stresses that accompany living with this disease. I want to go over a few a few things that would be helpful for everybody to gather this type of information. It's a behavioral history and social assessment. So obtaining this information, you can provide very important information. You can design activities around what you know they like to do in the past about each individual person. The history questions elicit information about their history of such behaviors as wandering, agitation, assault, sexual behaviors, elopement, and many others. The history can be obtained from the resident and family at the same time you conduct your social assessment.. And gather requested information from, you know, hospitals and nursing facilities, daycare, caregivers, spouses, family members, friends, because every little nugget that you gather about a person is going to come in handy when different situations arise. And I will explain that in detail over the many episodes that we're gonna cover this information moving forward. So a social assessment provides valuable information about a person in their social context. Examples of information obtained in the social assessment include their customs and practices, their beliefs, their fears and joys, their family history, things that they may be attached to, and how well they socialize, and availability of family and friends to provide support. Now, obtaining detailed information about the person, their background, their personality, their likes, their dislikes, et cetera, helps us provide optimal care.. It also helps us to design appropriate activities, and it enhances communication. So, let's take a look in more detail about what information you wanna try to gather from the social assessment. Is the resident outgoing? Are they social? Are they quiet? Are they physically active? Do they have a favorite food? Hobby or sport? How do they respond to stimuli? How do they respond to assistance? How does the resident relate to the family? Do they have children? Do they practice a religion? And if they do, what religion do they practice? How do they like to celebrate the various holidays? What do they like to to where? Are there any significant life events that the family can share that might trigger behaviors at any time? How do they respond to stress? How do they display their emotions? What is their general demeanor, or at least what was their general demeanor prior to— their brain disease. How do they react to discomfort and pain? What type of entertainment do they like? What type of music do they enjoy? What level of education did they complete? That's actually an important question. How do they respond to animals? I'll give you an example. My mother couldn't stand pets, so that's one thing I would never have introduced to her is pet therapy. So that's an important piece of information to gather. Would the resident strike in a given situation? In other words, become combative and try to hit or strike out. And are you aware of whether or not they're able to make their needs known? These are just a few of the very important information or nuggets for you to gather. Have ready in your toolbox to use in many, many, many of the situations that you will inevitably encounter throughout this journey with your loved one. And as we continue with these informational episodes, you will understand why in the stories I'm going to tell you and the examples I'm going to give you and in the very detailed information that I will provide, so you will be able to connect all the dots and see the big picture of just how this disease impacts people who suffer from it. Next, I want to just give you a little background of how things changed and have changed and continue to change Since my grandmother's diagnosis 50 years ago, back then when people started displaying the types of symptoms that I described to you that she did with me, people were medicated. People were overmedicated. That was customary. And to the point where they were almost like a zombie or in a comatose state. This was very, very common. They also used restraints on people who suffered from— well, at that time, I told you, they called it senile dementia, but it is synonymous with today's Alzheimer's disease and the other brain diseases that cause dementia. Then we moved to what was called reality therapy. Or I'm going to explain to you what that means. But it simply did not work. Then a woman by the name of Naomi Feil introduced what is currently called validation therapy, also known as joining their reality therapy. Adapting our world to theirs, and also using reminiscence therapy and life stations. And I will explain all of these to you between this episode and upcoming episodes. So let me start with what is reality orientation therapy? Well, reality orientation therapy R-O, also known as R-O, is a treatment strategy, was a treatment strategy, but it is still used. First described in 1966 as a rehabilitation method for confused elderly patients. The therapist would present the patient with continuous reminders about the date. Where they are, where they exist, personal details about them, about their life, about their likes and dislikes. A therapist and a patient would discuss recent events and their daily routine. The goal in this was to ground the patient in the present while also fostering social interaction. For example, if they were wondering where their parents are because their short-term memory switch flipped off and they're now pulling from their long-term memories and believe that they're a child living with their parents, they would be told under Reality Orientation Therapy that their parents are no longer living, if they weren't, or that they can't go home because they no longer live in that childhood home. With reality orientation therapy, the goal of the therapist was to reduce confusion and disorientation in dementia patients. They believed that the patients would gain a stronger understanding of their surroundings and their place within them, and would lead to a greater sense of control and increased self-esteem. But guess what? It did not work. What it did do was cause anxiety and even scared people, especially if they didn't remember that a loved one had passed away. You know, this could be like they were hearing it for the first time and could be sent into a panic. Also, arguing with someone who has dementia is futile and will often escalate into a more serious situation. These are what we call catastrophic reactions. To them, we might as well be calling them a liar and taking away any sense of control they may have in telling their story. Keep in mind, they believe 100% that what they are telling you is not true. Even if it doesn't make sense to you, it makes perfect sense to them. Reality orientation therapy focused on presenting patients with the current facts about time, the date, and their current environment. So patients who lived in a dedicated facility, like a memory care unit or assisted living or a skilled nursing facility, could receive this therapy 24 hours a day. So this meant that during every interaction, the healthcare workers and caregivers when they were interacting with the residents, those workers were emphatic about reinforcing the current dates, times, locations, and current events with the residents. The caregivers would even read the newspaper and watch TV with the patients to reinforce their reality, but unfortunately, they were reinforcing their reality, the reality of the caregivers with the healthy brains, not the reality of the patients and the residents who had the damaged, changing brains. And that is the difference. There may also be signs declaring the date. They would have multiple clocks in the room. They would emphasize current events, seasonal festivals, and other ways to do what they consider to be grounding social interaction with reality. The second therapy that I talked about is called Validation Therapy, also known as Join Their Reality. And that really what it boils down to. It's the opposite of Reality Orientation Therapy. It is literally adapting the world of the person with the healthy brain to the world of the person with the damaged brain. Instead of doing what Reality Orientation Therapy tried to do, was force them to adapt to ours. And as I said, it did not work. So validation therapy was developed by Naomi Feil after relocating to Cleveland with her parents from Germany where her father served as an administrator and her mother as the head of the social service department at the Montefiore Home for the Aged. Naomi followed in her parents' in her father's footsteps and began working with the elderly after receiving her master's degree in social work from Columbia University. After experiencing dissatisfaction and frustration with traditional treatment methods used with disoriented elderly dementia sufferers, Pfeil developed what we know today to be validation therapy. She's written two books on the subject and about the techniques that she uses. The first book was called Validation: The File Method, and the second is called The Validation Breakthrough. Validation therapy is a method of therapeutic communication which can be used to connect with someone who has moderate to late stage dementia. It places more emphasis on the emotional aspect of a conversation and less on their feelings and beliefs. It is a centered approach to care around a person's needs. By employing empathy and respect, validation therapy helps a person with dementia feel supported and understood and restore some of the dignity that dementia has taken away from them. The practice of embracing the reality of a person living with dementia has multiple uses and benefits for those living with the disease. It reduces stress. It reduces pain of loss for both the caregiver, the family members, and the person receiving care. People with dementia do not need to be grounded in reality, and it does no good anyway. Adapting to their reality versus forcing them to adapt to ours makes them feel more safe and secure in the moment. You're acknowledging them. You're validating them. It has been successful in redirecting them so they are no longer concerned about the safety and whereabouts of their loved ones so they can in turn enjoy the moments with you. When we engage them in their stories of the past, we learn and connect with them on their terms, not on ours. You know, it's not uncommon for individuals who are living with dementia or Alzheimer's to often speak of their younger years as if it was their current reality. Think again about that light switch analogy that I've demonstrated to you in a previous episode. They often tell stories of their childhood home, of their parents, and will even feel the need to go home and make dinner for their young children. Sometimes the need for this reality is so great that they become anxious and even angry when they can't find what, in their mind, should be there. So imagine how trapped and powerless they must feel in these moments. How would you feel if you woke up one day and everything you knew and loved were no longer there? Or if your once routine and purposeful life was just a distant memory. That's what it's like for them. So, understand that going along with their current belief offers them comfort, security, and peace of mind. We know that there is nothing we can say that will alter that current belief, until that short-term memory switch is flipped back on. So, if they ask you where their mother or father is, a suggestion is to tell them they're at the store and will be right back. If they ask you or tell you that they need to go home, perhaps you can redirect them in that thought by saying something like, well, Right now it's too cold to go outside. Or you can ask where their children are. And you can tell them that they're still at school. Understand that as humans, one of our very basic needs is to be loved, accepted, and to feel validated. It's an innate need that does not diminish with dementia. On the contrary, that need for acceptance may be increased since their world has been turned upside down. And validation therapy has been proven to be successful in being able to provide a higher quality of life in the lives of those living with Alzheimer's disease and dementia. Let me share with you now a real-life situational story from my book Truth, Lies, and Alzheimer's: Its Secret Faces that illustrates this concept of what I have just explained to you. This is the Mary Ann story. Quite often people with Alzheimer's disease display repetitive behaviors such as repeating a word, the same question, a story, or an activity. They repeat it over and over and over again. Or they'll do something and then undo what they just completed and start it over and over and over again. In most cases, they are more than likely looking for comfort, security, familiarity, or they're just plain bored. Repetitive behaviors are demonstrated by people with dementia because they may be unable to remember recent events or actions due to their short-term memory loss. Remember, the short-term memory switch is either flipped on or flipped off. They may also repeat words or gestures as a means to soothe themselves. The behaviors that you see may also be an attempt to communicate an unmet need or alert you to a physical discomfort. Well, Mary Ann happened to be my mother-in-law, and she loved to fidget with tissues. She would meticulously fold those tissues into neat little squares and then put them in her purse, and then she'd close her purse. Moments later, she would take out the folded tissue, she would unravel it, fold it again, and tuck it back into her purse. Fold, tuck, repeat. Fold, tuck, repeat. Over and over. Again. But this activity would keep her occupied for hours, and she seemed perfectly content doing it. But one weekend, when it was our turn to look after my mother-in-law, she was sitting on the sofa with me in our living room, and we were watching the nostalgic Andy Griffith Show. She looked peaceful for a time, folding her tissues and tucking them away into her purse. But then, all of a sudden, on the turn of a dime, her whole entire demeanor changed. All of a sudden, she anxiously stood up from her seated position on the sofa and demanded that I take her home. She asked me sternly, "Does Marty know where I am? He's gonna want his dinner. I've got to get home to him." I'm thinking in my head, did she really just ask me where Marty was? Oh my goodness. You see, Marty had passed away 4 years earlier. Well, my initial knee-jerk response was that I wanted to remind her that Marty had passed away and to pull her back into my reality. After all, she was my mother-in-law., and I wanted to correct her false belief because I wanted to make her better. But I knew better than to react that way, so joining her reality was really my only option in this scenario. "Yes, he knows you're here," I told her. "I just called him and he knows I'll bring— be bringing you home very soon." "Are you sure?" she replied. "Yes, Mary Ann, I'm certain." "Well, okay, if you're sure. I just don't want them to be worried about me or to be hungry." So, she sat back down on the sofa, refocused her attention on The Andy Griffith Show, and within a few minutes, she was back to to fold, tuck, repeat, fold, tuck, repeat, opening and closing that purse, but she looked very calm and peaceful again. And although I felt conflicted by joining her reality and feeling compelled to reassure her that Marty was okay and waiting for her at home, I knew that correcting her could have caused caused her a lot more pain and grief. In her mind, knowing that her husband was okay with her being over at our house relieved her concern at the moment and brought her the relief that she desperately needed to hear. After all, he believed that what she was telling me was true at that moment in time. And there was nothing I could have done that would have relieved that anxiety she was feeling in response to the false belief she was having of him still being alive and well and waiting for her at their home. Using the other option of trying to correct her false belief surely could have backfired. And hearing me tell her that he was no longer living could have shocked her. It could have been like she didn't know that he had passed on and that nobody had told her and they had kept it from her. I mean, just all these ideas going through her mind and creating a panic for her. Seeing her calmness after telling her what I did definitely reassured me that I did the right thing. Well, I knew Marianne would never be her normal self again. But at least the way I knew her before her Alzheimer's disease, this was her new normal. But somehow I did find comfort in knowing that she'd never be normal again, but that she would be okay. As we heard in our story, Marianne, people with dementia can seem perfectly fine one moment, and in the next, out of nowhere, they can be anxious and detached from reality. This can be one of the most troubling behaviors for families and caregivers to deal with. The difficulty stems in part from not wanting to see our loved ones uncomfortable, from not knowing how to handle a a problem that only exists in their mind, watching them lose touch with reality, that is a normal progression of the disease. And again, this is due to the short-term memory diminishing throughout the course of the illness. Mary Ann believed that her husband was still alive. Your loved one will likely have a different false belief. Remember that no matter what you do, you cannot dissuade the person from the belief that they're having in that moment. Therefore, exploring, joining their reality is the most effective approach to that occurrence. The essence of the approach is to acknowledge their reality and then divert their concern In Marianne's case, this meant acknowledging that her husband was at home, but explaining why there was no reason for her to be worried. The situation with your loved one may be different, but you can use the Acknowledge-Intervene approach for many similar situations. Additionally, what you heard, was Mary Ann exhibited repetitive behaviors, which are also extremely common with dementia. Hers was fold, tuck, and repeat. Now, your loved one may repeat words, activities, questions, or stories in the same conversation. They may also pace around a room. These types of behaviors are often a coping mechanism for dealing with stress or fear, but it certainly can be annoying for caregivers and family members. So, do what you can to redirect them, but as long as the behavior is safe, eliminating it is not mission critical. Our brains process information in different ways. We do this through abstract thought, or through concrete thought, and we rely on these thought processes every day. Now, this ability is lost in this Alzheimer's disease and other related dementia. This means that the many concepts that we rely on to live in this world no longer have meaning for a person living with dementia. So, in future episodes, I'm going to discuss ways in which we as caregivers and family members can help our loved ones make better sense of the world that they are living in. According to the Alzheimer's Association, the past and the future are held in order by the power of abstraction. Time is abstract. Abstract. Being able to think about the what-ifs in our lives relies on abstraction. How much is a part of abstraction, and the connection among family members and friends are abstract. Like the other powers of thought, abstraction declines with the progression of the dementing disease. Disability is loss. Early. In the disease. So, this means that many of the concepts we rely on to live in this world no longer have any meaning for a person living with dementia. I sure hope you've enjoyed the information that I've shared with you today. I want to thank you again for listening. We have so much to cover in our upcoming episodes, and I do want to provide you with information that you will find helpful and valuable throughout your journey. Remember, dementia awareness is every day, and kindness is the ability to speak with love, listen with compassion, and act with patience. These are all very necessary attributes to have in order to outlast Alzheimer's disease. One last note: this show is about you and how my experiences, expertise, and strategies will be able to help you and your loved one have an easier time while struggling through this disease. I know how difficult it is. Therefore, I'd love it if you would send me your comments and suggestions on what topics you'd like me to cover on this weekly show. You can send them to dementiawhisperer1@gmail.com. If you're listening to this on YouTube or if you got here through our social media page, please leave your comments or questions and I promise I will do my best to address them. I genuinely look forward to receiving your thoughts and ideas and in the meantime, Always take care of you. Talk to you next week.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.