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How Coping Strategies for Families of Alzheimer’s and Dementia Patients Have Evolved
Episode 7625th September 2024 • Truth, Lies & Alzheimer's • Lisa Skinner
00:00:00 00:21:02

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Alzheimer’s disease and related dementia have long been associated with a heavy emotional toll on families and caregivers of those living with it. In today’s episode, Lisa discusses how coping strategies have evolved over time and how the current best practices have provided valuable guidance to families worldwide today.  Don’t miss this very important episode! Some of the highlights include:

  • We’ve come a long way, baby, in our care approaches to people living with dementia.
  • Early Coping Strategies.
  • A New Shift in our Understanding of dementia.
  • The Modern Era of dementia caregiving.
  • And much, much, more.

About the Host:

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.

Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.

So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.

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Transcripts

Lisa Skinner:

Hi everyone. Thanks for being here and joining me for a new episode of the Truth, Lies and Alzheimer's show. I'm Lisa Skinner, your host, and I'm really excited to bring you some more very interesting information about living with Alzheimer's disease. Today, I want to talk to you about how the coping strategies for families of people living with dementia and Alzheimer's disease have evolved over time. Dementia and Alzheimer's disease have long been associated with a heavy emotional toll on both the people living with these diseases and their families and everybody involved with the people living with dementia, as most of us have already come to find that out, as these conditions Progress, they often lead to significant changes in the behavior, memory and personality of the affected individual family members, who, by the way, are usually the primary caregivers, face the daunting task of Managing these changes while also coping with their emotional and psychological impacts, and over time, the strategies and practices for coping with these challenges have evolved. I have personally seen this over the last five decades, so I believe through my expertise and my experience and watching the evolution of these strategies that the current best practices have provided valuable guidance to families worldwide. So I'm going to press the rewind button here and give you a little summary of the early coping strategies in the past. Families of individuals with dementia or Alzheimer's have very limited resources and understanding of these conditions. I have been hearing this from family members for decades, and unfortunately it's still the case for a lot of people, but it is starting to turn around, and we are seeing more resources accessible to us during much of the 20th century, dementia was often seen as a natural part of aging, and there was little distinction between normal age related memory loss and the more severe cognitive impairments associated with Alzheimer's disease and related dementia. So as a result, families were largely left to their own devices, relying on intuition and ad hoc methods to manage the challenges the early coping strategies were often reactive rather than proactive. Families typically tried to manage symptoms as they arose, without a clear understanding of what was happening to their loved ones. This is exactly what I've observed. This often led to frustration, to burnout, to strained relationships within the families as caregivers struggled to adapt to the ever changing needs of the people living with these diseases, institutionalization was a common outcome with many families turning to nursing homes or psychiatric facilities when the burden became too great to bear. I don't know if you ever heard your grandparents talking about the dreaded nursing home, but I remember my father talking about it. He said he'd rather have somebody take a gun to his head than put him in one of those places. Does that sound familiar to anybody that was the mindset for a very long time? So then there was a shift in understanding and in the resources that became available to us. In the latter half of the 20th century, we saw significant advancements in the understanding of dementia and Alzheimer's disease research began to shed light on the underlying causes of these conditions, and distinctions were made, finally, between normal aging and pathological cognitive and decline. In other words, what actually was causing the cognitive decline? So. It wasn't just a part of normal aging. This growing body of knowledge led to the development of more targeted interventions and support systems for both the people living with Alzheimer's disease and related dementia and their families and their caregivers. One of the key changes during this period was the recognition of the importance of caregiver support. As the challenges faced by family members became better understood, there was a concerted effort to provide them with the tools and resources they needed to cope support groups, educational programs and respite care services began to emerge, offering families much needed guidance and relief. These resources help to reduce the isolation and stress experienced by caregivers, allowing them to provide better care for their loved ones, while also taking care of their own well being, which we have come to understand is such an integral part of their world. Today, the coping strategies for families of dementia and Alzheimer's have evolved into more proactive and personalized approaches, and what I advocate being a certified dementia practitioner definitely emphasizes the importance of understanding not just behavioral symptoms of dementia and Alzheimer's disease, but the psychological impacts of living with Alzheimer's disease and dementia, one of the key principles in modern Dementia Care is the concept of person centered care, and You've heard me talk about this on many, many of the truth lies in Alzheimer's episodes. This approach focuses on understanding each individual's needs and preferences, rather than applying a one size fits all solution, which is the way they used to approach it, probably even 20 years ago, by tailoring care to the specific needs of each person, families can create a more supportive and nurturing environment that helps To reduce agitation, confusion and distress by focusing on the individual rather than just on the disease. These methods have helped families build stronger, more positive relationships with their loved ones, despite the challenges of dementia. I love that today's leading practices for coping with Alzheimer's disease and dementia focus on a holistic approach that addresses the physical, emotional and psychological needs of both the people living with these diseases, their families and their caregivers, versus focusing on medicating people. And these, some of these principles include number one, very important understanding what's causing the behavioral changes. Because this is, as a lot of you know, one of the most challenging aspects of Alzheimer's disease and related dementia that often accompany the disease. We see them every single day, the importance of understanding these changes as a form of communication. And I think this is really an important point, rather than simply a symptom to be managed, is really key by recognizing that behavior such as aggression, wandering, repetitive questioning may be a response to unmet needs, feelings of fear and confusion, then the families and the caregivers can develop more effective strategies for addressing these behaviors. We've talked about this in the past. They are trying to tell us something. We have the difficult task of figuring out what that something is, but we eventually figure it out. The other principle is an effective communication, as we know,

Lisa Skinner:

communication can be a significant. Advocate challenge when caring for someone with Alzheimer's disease and dementia, as the disease, often affects the person's ability to express themselves clearly, or even at all. So one of the things that I advocate and emphasizes the use of simple queer language, along with nonverbal cues such as eye contact, touch and facial expressions, I also advocate the use of validation therapy, which involves acknowledging the person's feelings and emotions rather than trying to correct or challenge their perceptions. This approach has shown for decades to help reduce frustration and anxiety for everyone involved, the person living with the disease, the caregivers, the family members, and it fosters a more positive and supportive interaction between all parties involved. And we have emotional and psychological support for caregivers, the emotional toll of caring for a loved one with Alzheimer's and dementia, as a lot of you have experienced can be overwhelming, leading to burnout and stress. So another thing that I advocate for is the importance of Caregiver Support, recognizing that the well being of caregiving is crucial, and the well being of the caregivers is crucial to the quality of care provided. And then, of course, there's education and training. And I've said this many, many, many, many times knowledge is a powerful tool for families coping with Alzheimer's disease and dementia, it's going to give you your superpowers to get through this part of your life, because it emphasizes the importance of knowledge and education and training for everybody, and will provide you with the skills that you need to manage the day to day challenges that these diseases present. So I wanted to talk to you about some very valuable I came up with three valuable takeaways that I believe are really important for you to consider about what I'm calling holistic approach to dementia care, person centered care, also non pharmacological approaches to dementia care, which means minimize the medication that's given to people living with Alzheimer's disease and dementia. And in the past, people were just routinely medicated and over medicated, and then we've discovered the positive effects of person centered care. So let's, let's, that's a takeaway. One of the things that you really want to have a clear understanding about are personalized care strategies. Emphasize the importance of tailoring care strategies to a person's individual preferences and their histories got to integrate their histories, especially when the short term memory is short circuiting and they're living back in a previous time period of their life, understanding the unique backgrounds, interests and needs of people with dementia can significantly enhance their quality of life. Techniques such as life story work or personalized activities can foster engagement and connection. You can make environmental modifications. This is number two takeaway. So highlight the role of the environment in supporting individuals with dementia, simple changes such as improving lighting and these. Every one of these things I am going to share with you right this second can make a huge impact on the quality of life that somebody lives with Alzheimer's disease and dementia. I know it seems a little surprising that some of these things do have such an impact, but they do so reducing noises. It's a big thing. Creating familiar spaces for people. This can help reduce confusion and anxiety. A well designed environment can promote independence and safety for those living with Alzheimer's disease and dementia. And then number three is promoting engagement through activities stress the effectiveness of meaningful activities in reducing behavioral symptoms and enhancing well being. We have learned that activities such as art therapy, music therapy, reminiscence therapy, all can stimulate cognitive function and emotional expression, providing a sense of purpose and joy. Trust me, medication will not do that. These takeaways can empower you as family members and you as caregivers and also professionals involved in the life of people living with dementia to adopt a more holistic approach in supporting individuals With dementia. Another takeaway is that it will provide caregivers with increased confidence, and I have seen this time and time again, as caregivers see the positive impact of non pharmacological approaches, in other words, not medicating people, they may feel more competent and confident in their caregiving abilities. This empowerment can lead to a more proactive and positive approach to dementia care, only improving the overall experience for everyone. By embracing these approaches caregivers and families can create a more supportive and enriching environment for their loved ones, ultimately enhancing the quality of care and life. So I'm going to ask this, pose this question to you, how do non pharmacological approaches, which is synonymous with holistic approach to care and Person Centered Care help people with dementia, versus being medicated, which was the old approach to dementia care. So in summary, this is the difference, while medications can be necessary for some individual, and this also depends on what brain disease they are living with and how it's changing their brains. Non pharmacological approaches offer a more comprehensive and compassionate way to enhance the lives of people living with dementia and focusing on their unique needs and promoting overall well being. So that's what I have for our episode today. I hope this has been really educational and helpful. I can provide more details. I have other episodes that go into a lot more detail about this topic. And also, I offer a training program, a six week training program that goes into a lot of detail about how to create a person centered environment for people living with Alzheimer's disease. So it would be a roadmap for your everyday experience taking care of or trying to have a successful relationship with a family member living with Alzheimer's disease and dementia. And if you go to our website, www, dot minding dementia.com, there's information on our website, and I believe there's a link that will give you more information. Is how you can access that training program. So that's what I have for us. Today. I will be back next week, as always, with another new episode of the Truth, Lies and Alzheimer's show. I'm Lisa Skinner, your host, and I hope all of you have a wonderful rest of your week, and I look forward to having you back with me here next week. Take care of yourselves. Bye, bye for now.

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