When Your Aging Parent Needs Help - 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 Skinner.

Welcome to the show, everybody. I am so glad to have you here with us for another episode of the Truth, Lies Alzheimer's Show. And as you know, the purpose of this My goal on this show is to talk about every aspect of Alzheimer's disease and dementia, and yes, it does include the good, the bad, and the ugly. But our goal is to get to the truth, dispel the lies and myths, and unveil what I call the secret faces of Alzheimer's disease in order for you to understand what it's truly like to live with brain disease. My hope is to zoom outside the paradigm of it exclusively being a memory loss condition and to shift people's understanding of just how dramatically this disease impacts the lives of those who have it, as well as their caregivers and family members like you. And for that matter, anybody who's involved in the life of a person living with dementia. And it truly does impact everybody. So, for today's episode, I did some research. I read a lot of Dr. Kernison's advice. She is a specialist in gerontology, so she specializes in working with the aged and aging senior citizens, and she also specializes in dementia care and works with caregivers. So I know we've talked about this topic on previous episodes, but I really thought it would be valuable to share the perspective of a medical doctor, which You know, sometimes it's a little different. It varies a little bit from the psychosocial approach, and that's what I specialize in, from an actual scientific or medical approach. So, she wrote this article in her Better Health While Aging, which is practical information for aging health and family caregivers. So, this is what I'm going to share with you. So, the question to Dr. Kernison from a patient was, "My mother is 80 years old. She is very active despite breaking her hip 2 years ago." And she says she's a retired psych nurse and has shown signs in the past of paranoia. Lately, my mother has heard voices of her grandchildren in her home and called my sister. She also has difficulty with getting the right words to say out and has her sleep pattern out of whack and will call people at odd times of the night. With her independence comes the fact that she won't share any medical information because she thinks we are getting ready to commit her. So, Dr. Carnician says, "As many of you know, it's fairly common for aging adults to develop problems like the ones you are describing. Some older adults will also start leveling a lot of false accusations. So, understandably, these problems are frustrating and worrying for adult children." You are absolutely right to be concerned about your mom's safety. And then she, she says, I'm going to share some ideas for how you can get started assessing her. But she first wants to explain the most common causes of this type of behavior in older adults. Because one of the things you must do is help your mother or your loved one and the doctors figure out why she's developed these behavior changes and other symptoms, such as Alzheimer's disease, which is true about 40% of the time. And in my previous discussions with you about these same typical and common symptoms that we're going to go over— delusions, hallucinations, disorganized thoughts or speech, and paranoia, we have addressed those as very common occurrences, signs and symptoms of people living with Alzheimer's disease and related dementia. Now, it can happen regardless of whether or not a person's living with Alzheimer's and dementia, according to Dr. Carnison. So, what she says is, "It's often hard to get a resistant older parent medically evaluated, but still it's worth persisting in this because many causes of paranoia or other odd behavior in older treatment can be treated." Paranoid symptoms, for example, believing that someone is out to get you, or is taking your stuff, or is in the house at night, falls into a category of mental symptoms that is technically called psychosis. Symptoms of psychosis can include delusions. Again, that means believing things that aren't true or real, which can include false accusations. Hallucinations, which means seeing or hearing things that aren't there. Disorganized thoughts or speech, meaning saying or thinking things that seem illogical or bizarre to others. Psychosis is uncommon in the younger people because much more common as people get older, and that's because any of these symptoms can emerge when people's brains aren't working properly for some reason, like brain disease that is changing the brain and damaging the brain. But it's not limited to Alzheimer's disease and dementia. A 2015 review article on late-life psychosis, according to Dr. Carnison, estimates that 23% of people will develop symptoms of psychosis in late life. And this is not, again, not limited to people suffering from dementia. And let me remind you that I know I've told you the story of my grandmother. She was my very first experience with Alzheimer's disease and dementia. And I was absolutely shocked and taken aback the day I went to visit her and completely taken off guard when we were sitting in her living room and she started telling me about the birds that were living in her mattress and coming out at night and pecking at her face. And she also told me about the men who were constantly trying to break into her home to harm her and the rats that were proceeding to invade her home. And she even pointed to her wall in her living room and said, "Oh yeah, I see them running across the wall all the time." So that was my first introduction to Alzheimer's disease and a related dementia caused by damage to the brain, and experiencing somebody definitely having delusions, hallucinations, and paranoia— paranoid symptoms. Dr. Carnison likes to review this article because the authors organized the causes of late-life psychosis into 6 6 Ds, and here they are. So the first D is delirium. About 10% of the people suffer from delirium. And she says this is a very common condition of worse than usual mental function, often brought on by the stress of severe illness, surgery, or hospitalization. The second D affects about 11% of the people, are drugs, alcohol, and other toxins. The abuse of drugs, alcohol, or other toxins, or withdrawal from alcohol or other substances can also cause psychotic symptoms. Disease accounts for about 10%. And the article that she's quoting from says, many physical health problems can interfere with brain function. These include electrolyte problems, such as abnormal levels of sodium, potassium, calcium, or magnesium in the blood, low levels of vitamin B12 or folate, thyroid problems, Severe liver or kidney dysfunction, infections, and neurological diseases. Brain damage from minor strokes can also cause psychotic symptoms. Brain damage from minor strokes— and this is me talking— is what we attribute vascular dementia to. But it is very common to see those same behaviors and symptoms in people with vascular dementia. Depression is the next D and accounts for about 33%. And other mood disorders including bipolar disease, about 15% of people with major depression may experience a psychotic symptom, delusions of guilt or deserved punishment are especially common. And then we have dementia, another D, that includes about 40% and also includes Alzheimer's disease, Lewy body dementia, and others. And I have mentioned this before, but there are actually over 100 brain diseases that cause dementia. So, a lot of illnesses out there. Delusions are extremely common in dementia, especially delusions on theft, spousal infidelity, abandonment, and persecution. Hallucinations, especially visual hallucinations, are very common, and that's especially in Lewy body dementia. And then the last D is called delusional disorder, and that pertains to about 2%. And schizophrenia spectrum disorder is about 1%. Now, these two conditions have many symptoms that overlap with those of dementia, deliria, or other conditions affecting thinking. Doctors must exclude these more common conditions before diagnosing a person with schizophrenia or delusional disorder. Schizophrenia affects an estimated 0.1 to 0.5% of people over age 65. Many were diagnosed earlier in life, but some people can develop the condition later in life. Delusional disorder affects an estimated 0.03% of older adults. So, as you can see, when older adults experience delusions, hallucinations, and paranoid thoughts, there is almost always something more going on with their health. Figuring out what is beneath the crazy or irrational or paranoid behavior is key. So, according to Dr. Carnison, if you are witnessing these types of occurrences and signs and symptoms in your loved one, it might be Alzheimer's disease. It might be frontotemporal lobe disease. It might be Lewy body dementia, but it might also be a mental health serious situation going on. So what's the best thing to do? The best thing to do, obviously, is to take your loved one to their primary care physician and let them know your concerns, your experiences, it's what is going on. I thought that was really an invaluable perspective to share with you. The article that I was reading this from was first published in 2016. Then it was reviewed with minor updates, and those were made in September of 2023. If you're interested in reading more, about Dr. Kernesan, you can look her up. Her website is www.betterhealthwhileaging.net. I read a lot of the information that she publishes. I've read her book. And I think she is an excellent, excellent resource for— that wants more insight and information into our aging parents or anybody with— living with Alzheimer's disease and dementia. And then the second doctor that I'm going to share her insight with you, her name is Dr. Brittany Lamb, and I read a lot of her insights as well. Now she is an ER physician helping dementia family caregivers achieve peace of mind in their decision. She's an educator, speaker, and advocate. And in this particular piece, somebody wrote in and said, hey, Doc, meaning Dr. Lam, do people living with dementia feel Do you feel pain? And I wanted to address this because I am asked that question all the time. And of course, I give my answer, and it's based on my research, my experiences, and what I've seen from a psychosocial perspective. She's answering this question from a scientific and medical And the answer is 100% yes, they do feel pain. And the reason why I think this is really important is because I have a friend whose husband was diagnosed with early onset dementia. And when it finally came to the end of his disease, He told his wife that he was experiencing headaches, and the hospice nurse told my friend, "That's impossible. People with dementia don't feel pain." And I knew that was not correct, and she would not believe it because she could tell that he was in tremendous pain. Pain. So anyway, if any of you have ever wondered, yes, you're hearing it straight from the medical doctor's mouth. They do absolutely feel pain. Now, she also says they may struggle to tell us where they are feeling it, but they do feel it. And we've talked a lot about that, how to recognize their unmet needs, and to recognize if they are uncomfortable or in pain or just, you know, need something. So, one tip that she has for caregivers and care partners is to pay attention to the person's nonverbal cues. You start learning them now, and I've gone over this as well. Dementia or not, people do some of the same things nonverbally. And she says, and they're the same things I described in another episode, "We grimace, we breathe heavily, we hold our breath, rub the area, we let out moans, we sweat, we vomit, and we roll around." So, we want to recognize and treat pain when it is the cause of a change in someone's behavior because untreated it can increase the risk of delirium. So, that is Dr. Lam's perspective on whether people living with dementia do feel pain. And I'm glad that I found a reference to just reinforce that this is absolutely true. They feel a lot of things that some of us are not actually even aware of. They may not be obvious to us, but it's absolutely true. So that is the information for today's episode. I am going to now share with you my What's News, and the title of this I want to share is excess dementia-related deaths declined in second year of COVID-19 pandemic. I know that we're at the tail end of the pandemic, but you know, you are hearing a lot about it in the news these days because we're expecting a resurgence of another wave. Wave of it. So I think this is really invaluable information to know. Dementia-related deaths rose substantially during the first year of the COVID-19 pandemic but fell in the second year. The decline during year 2 appears to largely be due to decreased cases of COVID— in nursing home and long-term care settings, according to an NIA-funded study published in the JAMA Neurology. Researchers from the University of California, San Francisco, and other institutions analyzed death certificates of more than 2 million adults 65 years old and older that mention Alzheimer's disease or a related dementia from the National Center for Health Statistics mortality surveillance system. Next, they analyze the U.S. Census Bureau Population Estimates Program data from January 2014 to February 2020 to estimate the number of dementia-related deaths that would have been expected had the pandemic not happened. The difference between expected and actual death during the first year, which was March 2020 to February of 2021, and the second year, which was March 2021 to February of 2022 of the pandemic, were considered excess deaths. Now, to understand how the availability of vaccines influenced excess mortality, the researchers analyzed COVID-19 vaccination data from the U.S. Centers for Disease Control and Prevention COVID Data Tracker. In addition to examining the overall population, the researchers analyzed data on age, race, ethnicity, and place of death. In the first pandemic year, there were nearly 95,000 excess dementia-related deaths. And then the number declined by 77% in the second year to approximately 22,000 excess deaths. So, in the first year it went from 95,000 to 22,000 in the second year. Significant year 2 declines occurred for all demographic groups and was associated with the vaccine rollout. In states with faster vaccine rollout and greater coverage, there were larger reductions in excess dementia-related deaths. So, all groups experienced declines in year 2, not everyone experienced the same level of decline. Nursing home and long-term care residents experienced the largest decrease in year 2 excess deaths, while those living at home only experienced modest declines. This may suggest that older adults with Alzheimer's or a related dementia living in the community rather than in nursing and long-term care facilities may not have equally benefited from COVID-19 prevention efforts. Racial and ethnic disparities in excess deaths were also apparent throughout the pandemic. Now, to conclude this, they say examining the number of additional deaths related to dementia during the pandemic— and observing any fluctuations can offer valuable insights into the effectiveness of COVID-19 prevention and treatments developed in the initial year of the pandemic, particularly in safeguarding older adults. Now, a limitation of the study was the use of death certificate data from 2022 that had not yet been finalized. So the next step may involve investigating the reasons behind the persistently high number of excess deaths among older adults with dementia who lived at home throughout the pandemic. Additionally, these findings highlight the need to identify measures that can help reduce disparities in excess deaths among various groups. So there you have it. I think that that study definitely supports the value of the vaccines. A lot of people, I think, are still under the misconception that they really were ineffective because people still get COVID. This is true. People do still get COVID. The difference is before the vaccine, the death rates were out of control. After the vaccine, the people who were vaccinated were less seriously ill and survived— had a very high survival rate. And there's your difference. Okay. So, the reference for that is Chen, R., et al. Excess mortality with Alzheimer's disease and related dementias as an underlying or contributing cause during the COVID-19 pandemic in the U.S., JAMA Neurology 2023. If you want to look that up and read that for yourself. Okay. Well, that is going to conclude this episode for the Truth, Lies Alzheimer's show. I'm your host, Lisa Skinner. I will be back next week with another new and informative episode and hopefully information that you will find worthwhile and valuable. And I want to thank all of you again for taking the time to listen today. And, you know, I've said this many times, there is so much to cover. And I'm going to share everything that I can find to share with you through my experience, my knowledge, and my research to keep you updated on the latest information pertaining to living with Alzheimer's disease and related dementia. If you as a family member or caregiver are going through this journey now. I hope that the tips and strategies and insights that I'm able to share with you does make your world a little easier to live in, and I hope that it helps you provide a high-quality purposeful, and meaningful life for your loved one living with Alzheimer's disease. So, again, remember what I like to say: dementia awareness is every day. And the kindness is the ability to speak with love, listen with compassion, and act with patience. All very necessary attributes to have in order to outlast Alzheimer's disease. Thanks again for being with us. We'll be back next week with another new episode of Truth, Lies Alzheimer's Show. Thanks.

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 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.