Misunderstood Realities of Caring for Alzheimer’s and Dementia Patients

Lisa Skinner: 00:00:00

Lisa, welcome to another New episode of the Truth, Lies and Alzheimer's show with your host, Lisa Skinner, and today I'm going to be talking about the misunderstood realities of care, caring for Alzheimer's and people living with dementia, caring for someone with Alzheimer's or dementia is often fraught with misconceptions, which can lead to unnecessary frustration, ineffective caregiving and emotional burnout. Any of you out there relate to that well as a seasoned behavioral specialist, I have dedicated my career, as you know, to educating caregivers and family members about the complexities of these conditions. Here are some of the most misunderstood aspects of caring for individuals with Alzheimer's and dementia that memory loss is the only symptom. This is a huge misunderstanding, and one of the most common misconceptions that memory loss is the sole symptom of Alzheimer's disease and dementia. Now while memory impairment is a hallmark of these diseases, they also manifest in a wide range of cognitive behavioral and emotional symptoms. Patients may experience confusion, difficulty in communication, changes in their personality and behavioral issues such as aggression or anxiety. So understanding the full spectrum of symptoms is crucial for providing comprehensive care, and that's why I emphasize that recognizing these diverse manifestations can help caregivers and family members manage the challenging behaviors much more effectively. Another common misunderstanding is reasoning with people living with Alzheimer's disease and dementia is always effective. Well, you've probably learned by through the school of hard knocks that a natural reaction when someone with dementia exhibits irrational behavior, our instinctive reaction is that we want to try to reason with them. However, we've all found out the hard way that because Alzheimer's and dementia affect the brain's ability to process information and logic, making rational discussions off are often futile and even counterproductive. So I advise caregivers to adopt a more empathetic approach, focusing on the emotional state of the person, rather than attempting to correct misconceptions. This approach can reduce agitation and also improve the quality of interactions between the caregivers and the person living with dementia. Another common misunderstanding is that caregiving is a one person job. Some of you are trying to do it that way, but it is exhaustive, as I'm sure you know, the emotional and physical toll of caregiving can be immense, and many caregivers believe they must shoulder this responsibility alone. But please don't discount the importance of building a support network. I know that you're probably thinking, well, that's easier said than done, and yes, it is quite often, but I encourage you to seek help from family members, friends, professional support services. There are respite care services out there. There are support groups out there that can provide necessary relief and emotional support for you, which will seriously help you maintain your well being while caring for a loved one or caring for a person living with dementia. Another common misunderstanding is that Alzheimer's and dementia are the same for everyone. This is far from the truth. Alzheimer's and dementia affect everyone differently. The diseases are highly individualized. The progression and symptoms can vary from person to person depending on factors like the type of dementia. In other words, what brain disease is causing the dementia, you have to also factor in the person's health and their personal history. This variability means that there is not a one size fits all approach to caregiving, the person centered approach to care, and this is where care is tailored to the individual's unique needs and preferences rather than following just a generic care plan, is what I teach and what I honestly believe is the best and most effective approach. Another misunderstanding, all behavioral changes are due to the disease? Well, it's easy to attribute all changes in behavior to Alzheimer's or dementia, but not all symptoms are directly related to the disease. That's a little confusing, but you have to factor in environmental factors, physical discomfort and medication side effects that can also contribute to behavioral issues. It is true that when you see a lot of behavioral issues, it's the disease displaying itself, but there are so many other factors that trigger these expressions. So it's not always a direct result of just the disease itself. For instance, a person might become agitated because they have a urinary tract infection, which can be overlooked if the behavior is assumed to be a symptom of dementia, I stress the importance of thorough assessments and considering all possible factors when addressing behavioral changes. And I have said before, and this remains to be 100% true, they're trying to tell us something, and that's pretty consistent with behavioral expressions, but they're not always a direct result of the changing brain. Could be a urinary tract infection is a perfect example, but they are still trying to tell us something. Another one, there's no point in engaging with people living with Alzheimer's disease and dementia. And the reason why I bring this one up is because some people mistakenly believe that just because Alzheimer's and dementia do come with significant cognitive impairments, that there's still little value in engaging them in activities. And that is another misconception that couldn't be farther from the truth. I can't emphasize enough meaningful engagement is crucial for maintaining quality of life. Activities that are tailored to the person's abilities and interests can and do provide a sense of purpose, meaning and joy, even in the later stages of the disease. We've talked about this before. Techniques such as using life station skills or evidence based approach, where the people engage in familiar tasks, can be particularly effective in providing comfort and in reducing anxiety. Another misunderstanding is believing that preparing for the future is hopeless.

Lisa Skinner: 00:09:12

The progressive nature of Alzheimer's and dementia can make future planning seem daunting and for some, even pointless. However, I can't emphasize enough that early planning can significantly ease the burden for both the person living with the disease and the family members and caregivers. Well, this includes legal and financial planning, as well as making decisions about future care preferences you want to have that hard conversation before they are not able to express their their wishes to you anymore. So proactive planning allows families to focus on. More on spending quality time together, rather than being overwhelmed by crisis management as disease progresses. And also, I want to stress implementing cognitive therapies early on in the disease process, when they first start showing the symptomology, because we know that this can help to slow the progression of the disease. Another misunderstanding, professional help is only needed in the final stages. Many families believe that professional help, such as hiring a dementia specialist or moving a loved one to a care facility is only necessary in the final stages of the disease. Now this belief really carries a double edge on the sword, because you have to kind of assess each case individually, to decide when the best time to seek professional help is going to work best for you. I advised against taking a reactive approach, suggesting that professional support should be sought early early intervention can help in managing symptoms more effectively and educating family members and ensuring that the people received the best possible care throughout the progression of the disease. So it's really an individualized situation. I've seen situations where, you know, the family members wanted to keep their loved one at home for as long as possible, I can certainly empathize with that. But in particular situations, it's not always the best approach for that particular individual. So it really is a case by case basis, misunderstanding, this misunderstanding we've talked about before that communicating with people with dementia is futile. Now we know that as Alzheimer's disease and dementia progresses, the people may lose the ability to communicate verbally, leading some caregivers and family members to believe that further communication efforts are futile, not true. I argue that communication remains crucial even in the absence of verbal interaction. Because don't forget, there's still non verbal communication, such as through touch and facial expressions and body language, these can be powerful tools for connecting with the person living with the disease and for providing comfort to them. So there's more than one way to communicate with people living with dementia that are really effective for their quality of life. And then another one here is that caregiving ends with placement in a facility. For some placing a loved one in a care facility is seen as the end of their caregiving journey. I don't believe that for a second. I believe that family involvement remains critical, even after professional care is in place, regular visits, communicating with the care staff and continuing to emotionally support your loved one can significantly enhance the quality of their lives. Trust me on this one, family members continue to play a vital role in advocating for their loved one and ensuring that their care aligns with their values and preferences even in the final stages of the disease, caring for someone with Alzheimer's or dementia, as we know, is definitely one of The most challenging roles a person can ever undertake, and then it's compounded by widespread misconceptions about the diseases, just like I shared with you today. So one of the reasons I wanted to talk about these because I believe that by dispelling these common. Us, we can approach our role with greater confidence, compassion and effectiveness, which will ultimately improve the quality of life for everybody involved. So I want to update another question that comes up regularly. And after being involved in this industry for as long as I have, I do think it's important to update everybody on this topic, because things change on a dime. So regarding whether or not there's a cure for dementia, I want to say that as of today, right now, there is currently no cure for dementia. And as a matter of fact, because dementia is caused by different diseases, it's really unlikely that there will be a single cure for it. We're talking over 200 known brain diseases that cause dementia, so I think that's a lot of why we don't have anything yet, but huge strides are being made in understanding how different diseases cause dementia in the brain and how it produces dementia. And with increased funding over the past years, there are now many more research studies and clinical trials taking place, although a cure may still be some years away, there are some very promising advances. And here are some of the areas that researchers are working on and what their findings are to date. And this information came from www.nhs.uk, forward, slash. So the gentleman, the doctor who wrote the forward to my book truth lies and Alzheimer's at secret faces, I know that he's been working on stem cell research for over 30 years now, Dr Anand Srivastava, and that's one of the researches that are cited here are stem cells,

Lisa Skinner: 00:17:28

because they are building block cells. They can develop into many different cell types, including brain or nerve cells. How exciting scientists have taken skin cells from people with certain types of dementia like Alzheimer's disease and reprogram them into stem cells. In the lab, they've triggered these stem cells to become brain cells. And I know from speaking with Dr Srivastava that this is what his research lab has been trying to perfect for 30 years now, but they're just not quite there yet. By studying these cells, scientists have gained important insights into how the damage to the brain begins and how it might be halted. These brain cells can also be used to test potential treatments at a very early stage. Then there's immunotherapy. Immunotherapy involved boosting the body's immune system to fight disease. It's been effective at treating some other long term diseases, such as cancer, different types of immunotherapy treatment for dementia have been trialed in recent years or are currently being studied. For example, some studies have tried using a vaccination against abnormal proteins that build up in the brain in Alzheimer's disease. Other studies have used monoclonal antibodies, which are artificial versions of immune system antibodies, to target the abnormal proteins to try to slow down the disease progression. Truthfully, these studies have had mixed results so far, with some being unsuccessful, as we unfortunately are finding out, but some monoclonal antibody medicines have shown promising results and are now being considered as treatments for Alzheimer's. Another area being explored by researchers involves specialized immune cells in the brain called microlia. These cells are involved in clearing out debris in the brain in Alzheimer's. Disease, these immune cells appear to become overactive, which may be causing further damage to the brain. Current studies are trying to identify how to prevent this, and then another thing that they are aggressively working on are what's called gene based therapies, there is a great interest in using gene based therapies to target genes that can cause dementia, such as Alzheimer's or Frontotemporal dementia. These gene based therapies are also being used to reduce the production of proteins involved in a dementia causing disease, like the tau proteins that we see in Alzheimer's disease. Another research that's happening is what's called repurposing medicines, repurposing existing drugs used for another condition is often quicker way of finding medicines to treat dementia, instead of the years and years and years and years of clinical trials and all The experimental processes that we have to legally go through so they're, they're working on that. So there are some current medications being explored as possible treatments for Alzheimer's and vascular dementia, which is caused by many strokes and strokes that are used for one of them is type two diabetes. They're experimenting with high blood pressure medications, and this one's a little surprising, medications used for erectile dysfunction. Experts know that damage to the brain caused by Alzheimer's disease can start many, many, many years before the symptoms appear. If people at risk of Alzheimer's could be identified earlier in the stage process. It is hoped that treatments could be offered that would slow down or even stop the disease. So far, they haven't been able to accomplish this, but that's what they're working on. Now you've probably heard of PET scans. These are specialized brain scans, P, E, T scans have been developed to study two proteins, the amyloid and tau in the brains of those with Alzheimer's disease. The aim of the PET scan is to increase the understanding of the disease process and also to identify those people who will benefit most from new drug treatments. The caveat is that although PET scans are sometimes used to help with a dementia diagnosis, these highly specialized scans are still mainly being used as part of clinical trials. I know they're available in some institutions, I've known people who have had them, but they're they're not readily available to everybody yet, and some insurance companies just won't pay for them. A number of different trials are now underway in people who are currently well, but are at increased risk of Alzheimer's disease. So even if we find an effective care for dementia, the best approach would be to try to prevent it from happening in the first place. Research has shown that the risk factors of heart disease and stroke, such as raised blood pressure, diabetes, obesity and smoking, are also huge risk factors for developing Alzheimer's disease and related dementia. So by modifying or changing these risk factors in midlife, the risk of dementia could be reduced by up to 30 to 40% I also want you to know this update, which I find really a little unnerving, that neurological diseases now surpass cardiovascular diseases as the leading cause of global morbidity and disability affecting over 3 billion people worldwide. A study published in Lancet neurology reveals that 20 per. Percent rise in neurological conditions over the last two decades, with stroke, dementia, diabetic neuropathy and autism among the most prevalent. However, prevention strategies such as Vax, vaccines and reducing risk factors like high blood pressure and smoking do offer hope. Prioritizing brain health through public education campaigns and accessible guidelines is essential to combat this growing crisis and improve global health outcomes. So I want to just restate for you. This is current information as of now. There is no known cure for treating Alzheimer's disease or related dementia, and there is no known way to reverse the symptoms of Alzheimer's disease and dementia. It is a progressive neurodegenerative disease that cannot be changed, reversed or cured. So the only exception to that, there's a couple exceptions, alcohol dementia has we've seen some ability to reverse that when people go through rehab, not always, but sometimes, just depends on how much damage has been done to the brain by the alcohol and then there, of course, there's mild cognitive impairment, because, as I've mentioned before, not all people who Who display mild cognitive impairment progress to dementia. They do if the mild cognitive impairment is caused by a brain disease like Alzheimer's, but mild cognitive impairment is not always caused by a brain disease. There are other reasons why people might be displaying um,

Lisa Skinner: 00:27:26

cognitive loss, memory loss, but that's the only exception, really, right now that that that if your mild cognitive impairment is caused by Alzheimer's disease, it is not reversible. It's not curable. It is reversible if it is not being caused by Alzheimer's disease, and they clear up what is causing it, which could be a medical condition. All right, so that's what I have for you for today, thanks again for being here with me. I appreciate you listening to the information I bring to you every week on the Truth Lies and Alzheimer's show. I'm Lisa Skinner, your host. I hope you all have a very blessed week, and I look forward to having you back next week with another brand new episode. So take care for now, and I will be back very soon. Thanks again, everybody.