Episode 127

When Your Aging Parent Needs Help - Encore

We’re revisiting this episode because its insights remain as powerful and relevant today as when it first aired.

On today's episode of the Truth, Lies, & Alzheimer's Show, Lisa shares the advice of Dr. Leslie Kernisan, MD MPH, author of the book, "When Your Aging Parent Needs Help" about paranoid symptoms, delusions, hallucinations, and disorganized thoughts or speech, also known as psychosis. Dr. Kernisan is a gerontologist who specializes in the aged. Lisa explains Dr. Kernisan's definitions and symptoms of what to look for when symptoms of psychosis are occurring in our loved ones, some of the causes, and what you can do if you see this happening. Lisa also shares the opinion of Dr. Brittany Lamb, an ER Physician who specializes in dementia, as she answers the question, "Do people living with dementia feel pain?" So, please tune in...you won't want to miss this informative episode!

For more information: When Your Aging Parent Needs Help

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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Transcript
Lisa Skinner:

Welcome to the show, everybody. I am so glad to

Lisa Skinner:

have you here with us for another episode of the truth,

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lies and Alzheimer's show. And as you know, the purpose of this

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show is to talk about every aspect of Alzheimer's disease

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and dementia and death. It does include the good, the bad and

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the ugly, but our goal is to get to the truth, dispel the lies in

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this and unveil what I call the secret faces of Alzheimer's

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disease. In order for you to understand what it's truly like

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to live with brain disease, my hope is to zoom outside the

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paradigm of it exclusively being a memory loss condition, and to

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shift people's understanding of just how dramatically this

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disease impacts the lives of those who have it, as well as

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their caregivers and family members like you, and for that

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matter, anybody who's involved in the life of a person living

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with Dementia. And it truly does impact everybody. So for today's

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episode, I did some research. I read a lot of Dr carnison

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advice. He is a specialist in gerontology, so she specializes

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in working with the aged and aging senior citizens, and she

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also specializes in dementia care and works with caregivers.

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So I know we've talked about this topic on previous episodes,

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but I really thought it would be valuable to share the

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perspective of a medical doctor, which you know sometimes is a

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little different. It varies a little bit from the psychosocial

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approaches, and that's what I specialize in, from an actual

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scientific or medical approach. So she wrote this article in her

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better health while aging, which is practical information for

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aging health and family caregivers. So this is what I'm

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going to share with you. So the question to Dr kernesen from a

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patient was, my mother is 80 years old. She's very active,

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despite breaking her hip two years ago, and she says she's a

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retired psych nurse and has shown signs in the past of

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paranoia. Lately, my mother has heard voices of her

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grandchildren in her home and called my sister. She also has

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difficulty with getting the right words to say out, and has

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her sleep pattern out of whack, and will call people at odd

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times of the night with her independence comes the fact that

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she won't share any medical information because she thinks

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we are getting ready to commit her so Dr carnesian says, as

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many of you know, It's fairly common for aging adults to

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develop problems like the ones you are describing. Some older

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adults will also start leveling a lot of false accusations. So

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understandably, these problems are frustrating and worrying for

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adult children. You are absolutely right to be concerned

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about your mom's safety. And then she she says, I'm going to

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share some ideas for how you can get started assessing her, but

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she first wants to explain the most common causes of this type

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of behavior in older adults, because one of the things you

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must do is help your mother or your loved one and the doctors

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figure out why she's developed these behavior changes and other

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symptoms such as Alzheimer's disease, which is true about 40%

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of the time, and in My previous discussions with you about these

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same typical and common symptoms that we're going to go over,

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delusion, hallucinations, disorganized thoughts or speech

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and paranoia, we have addressed those as very common. The

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occurrences, signs and symptoms of people living with

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Alzheimer's disease and related dementia now can happen

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regardless of whether or not a person's living with Alzheimer's

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and dementia, according to Dr carnison, so what she says is

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it's often hard to get a resistant older parent medically

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evaluated, but still, it is worth persisting in this,

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because many causes of paranoia or other odd behavior in older

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treatments can be treated paranoid symptoms, for example,

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believing that someone is out to get you or is taking your stuff

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or is in the house at night, falls into a category of mental

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symptoms that is technically called psychosis. Symptoms of

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psychosis can include delusions. Again, that means believing

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things that aren't true or real, which can include false

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accusations, hallucinations, which means seeing or hearing

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things that aren't there, disorganized thoughts or speech,

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meaning saying or thinking things that seem illogical or

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bizarre to others. Psychosis is uncommon in the younger people,

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because much more common as people get older, and that's

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because any of these symptoms can emerge when people's brains

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aren't working properly for some reason, like brain disease, that

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is changing the brain and damaging the brain. But it's not

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limited to Alzheimer's disease and dementia. A 2015 review

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article on late life psychosis, according to Dr carnison,

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estimates that 23% of people will develop symptoms of

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psychosis in late life, and this is not again, not limited to

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people suffering from dementia. And let me remind you that I

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know I told you the story of my grandmother. She was my very

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first experience with Alzheimer's disease and

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dementia, and I was absolutely shocked and taken aback the day

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I went to visit her and completely taken off guard when

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we were sitting in her living room, and she started telling me

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about the birds that were living in her mattress and coming out

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at night and pecking at her face. And she also told me about

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the men who were constantly trying to break into her home to

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harm her, and the rats that were proceeding to invade her home.

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And she even pointed to her wall in her living room. Said, Oh

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yeah, I see them running across the wall all the time. So that

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was my first introduction to Alzheimer's disease and a

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related dementia caused by damage to the brain and

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experiencing somebody definitely Having delusions, hallucinations

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and paranoia, paranoid symptoms. Dr carnison liked to review this

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article because the authors organized the causes of late

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life psychosis into six ds, and here they are. So the first D is

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delirium. About 10% of the people suffer from delirium. And

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she says this is a very common condition of worse than usual

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mental function, often brought on by the stress of severe

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illness, surgery or hospitalization. The second D

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affects about 11% of the people are drugs, alcohol and other

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toxins. The abuse of drugs, alcohol or other toxins, or

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withdrawal from alcohol or other substances can also cause

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psychotic symptoms, disease accounts for about 10%

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and the article that she's quoting from says many physical

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health problems can interfere with brain function. These

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include electrolyte problems, such as abnormal levels of

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sodium, potassium. Calcium or magnesium in the blood, low

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levels of vitamin B, 12 or folate, thyroid problems, severe

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liver or kidney dysfunction. Infections and neurological

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diseases. Brain damage from minor strokes can also cause

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psychosis, symptoms, brain damage from minor strokes, and

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this is me talking is what we attribute vascular dementia to,

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but it is very common to see those same behaviors and

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symptoms in people with vascular dementia. Depression is the next

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B and accounts for about 33% and other mood disorders, including

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bipolar disease, about 15% of people with major depression may

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experience a psychotic symptom, delusions of guilt or deserved

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punishment are especially common, and then we have

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dementia, another D that includes About 40% and also

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includes Alzheimer's disease, Lewy body dementia and others.

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And I have mentioned this before, but there are actually

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over 100 brain diseases that cause dementia. So a lot of

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illnesses out there, delusions are extremely common in

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dementia, especially delusions on theft, spousal infidelity,

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abandonment and persecution. Hallucinations, especially

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visual hallucinations, are very common, and that's especially in

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Lewy body dementia. And then the last D is called delusional

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disorder, and that pertains to about 2% and schizophrenia

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Spectrum Disorders about 1% now these two conditions have many

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symptoms that overlap with those of dementia, deliria or other

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conditions affecting thinking, doctors must exclude these more

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common conditions before diagnosing a person with

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schizophrenia or delusional disorder. Schizophrenia affects

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an estimated 0.1 to 0.5% of people over age 65 many were

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diagnosed earlier in life, but some people can develop the

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condition later in life. Delusional disorder affects an

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estimated 0.03% of older adults. So as you can see, when older

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adults experience delusions, hallucinations and paranoid

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thoughts, there is almost always something more going on with

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their help, figuring out what is beneath the crazy or irrational

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or paranoid behavior is key. So according to Dr carneson, if you

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are witnessing these types of occurrences and signs and

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symptoms in your loved one, it might be Alzheimer's disease, it

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might be frontotemporal lobe disease, it might be Lewy body

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dementia, but it might also be a mental health period situation

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going on. So what's the best thing to do? The best thing to

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do, obviously, is to take your loved one to their primary care

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physician and let them know your concerns, your experiences, what

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is going on. I thought that was really an invaluable perspective

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to share with you the article that I was reading from was

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first published in 2016 then it was reviewed with minor updates,

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and those were made in September of 2023 if you're interested in

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reading more about Dr carnezon, you can look her up. Her website

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is www.betterhealthwilaging.net I read a lot of the information

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that she publishes. I've read her book, and I think she is a.

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An excellent, excellent resource for such that wants more insight

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and information into our aging parents, or anybody with living

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with Alzheimer's disease and dementia, and then the second

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doctor that I'm going to share her insight with you. Her name

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is Dr Brittany lamb, and I read a lot of her insights as well.

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Now she is an ER physician helping dementia family

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caregivers, but she's peace of mind in their decision, she's an

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educator, maker and advocate. And in this particular piece,

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somebody wrote in and said, Hey, Doc, meaning Dr lamb, do people

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living with dementia feel pain? And I wanted to address this

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because I am asked that question all the time, and of course, I

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give my answer, and it's based on my research, my experiences,

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and what I've seen from a psychosocial perspective, she's

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answering this question from a scientific and medical

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perspective, and the answer is 100% yes, they do feel pain. And

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the reason why I think this is really important is because I

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have a friend whose husband was diagnosed with early onset

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dementia, and when it finally came to the end of his disease,

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he told his wife that he was experiencing headaches, and the

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hospice nurse told my friend, that's impossible. People with

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dementia don't feel pain, and I knew that was not correct, and

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he would not believe it, because she could tell that he was in

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tremendous pain. So anyway, if any of you have ever wondered,

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yes, you're hearing it straight from the medical doctor's mouth.

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They do absolutely feel pain. Now, she also says they may

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struggle to tell us where they are feeling it, but they do feel

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it, and we've talked a lot about that, how to recognize their

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unmet needs and to recognize if they are uncomfortable or in

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pain or just, you know, need something. So one tip that she

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has for caregivers and care partners is to pay attention to

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the person's nonverbal cues. You start learning them now, and

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I've gone over this as well, dementia or not, people do some

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of the same things, non verbally, and she says, and

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they're the same things I described in another episode, We

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grimace, we breathe heavily, we hold our breath, rub the area,

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we let out moan, we sweat, we vomit, and we roll around so we

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want to recognize and treat pain when it is the cause of a change

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in someone's behavior, because untreated, it can increase the

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risk of delirium. So that is Dr lamb's perspective on whether

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people living with dementia do feel pain. And I'm glad that I

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found a reference to just reinforce that this is

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absolutely true. They feel a lot of things that some of us are

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not actually even aware of. They they may it may not be obvious

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to us, but it's absolutely true. So that is the information for

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today's episode I am going to now share with you my what news

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and the title of this chair

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is excess dementia related deaths declined in second year

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of covid 19 pandemic. I know that kind of we're at the tail

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end of the pandemic, but you know, you are hearing a lot

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about it in the news these days because we're expecting a

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resurgence of a wave of it. So I think this is really. Really

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invaluable information to know dementia related deaths rose

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substantially during the first year of the covid 19 pandemic,

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but still in the second year, the decline during year two

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appears to largely be due to decrease the covid in nursing

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home and long term care settings, according to an Nia

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funded study published in the Jama neurology research from the

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University of California San Francisco and other

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institutions, analyzed death certificates of more than 2

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million adults 65 years old and older that mention Alzheimer's

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disease or a related dementia from the National Center for

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Health Statistics mortality surveillance system. Next they

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analyze the US Census Bureau population estimates program

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data from January 2014 to February 2020 to estimate the

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number of dementia related deaths that would have been

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expected had the pandemic not happened, the difference between

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expected and actual death during the first year, which was March

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2020, to February of 2021, and the second year, which was March

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2021, to February of 2022, of the pandemic were considered

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excess deaths. Now to understand how the availability of vaccines

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influence excess mortality, the researchers analyzed covid 19

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vaccination data from the US Centers for Disease Control and

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Prevention covid data tracker, in addition to examining the

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overall population, the researchers analyzed data on

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age, race, ethnicity and place of death. In the first pandemic

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year, there were nearly 95,000 excess dominance related deaths,

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and then the number declined by 77% in the second year to

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approximately 22,000 excess deaths. So in the first year, it

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went from 95,000 to 22,000 in the second year, significant

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year two declines occurred for all demographic groups and was

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associated with the vaccine rollout. In states with faster

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vaccine rollout and greater coverage, there were larger

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reductions in excess dementia related deaths, so all groups

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experienced declines in year two, not everyone experienced

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the same level of decline. Nursing Home and long term care

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residents experienced the largest decrease in year two,

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excess deaths, while those living at home only experienced

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modest declines. This may suggest that older adults with

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Alzheimer's or a related dementia living in the

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community, rather than in nursing and long term care

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facilities, may not have equally benefited from covid 19

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prevention efforts, racial and ethnic disparities in death were

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also apparent throughout the pandemic. Now, to conclude this,

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they say, examining the number of additional deaths related to

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dementia during the pandemic, and observing any fluctuations

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can offer valuable insight into the effectiveness of covid 19

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prevention and treatments developed in the initial Year of

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the pandemic, particularly in safeguarding older adults. Now a

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limitation of the study was the use of death certificate data

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from 2022 that had not yet been finalized. So the next step may

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involve investigating the reasons behind the persistently

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high number of excess deaths among older adults with dementia

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who lived at home throughout the pandemic. Additionally, these

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findings highlight the need to identify measures that can help

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reduce disparities in excess deaths among various groups. So

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there you have it. I think. That study definitely supports the

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value of the vaccines. A lot of people, I think, are still under

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the misconception that they really were ineffective because

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people still get covid. This is true, people do still get covid.

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The difference is, before the vaccine, the death rates were

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out of control. After the vaccine, the people who were

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vaccinated were less seriously ill and survived, had a very

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high survival rate, and there's your difference. Okay, so the

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reference for that study is Chen R et al, excess mortality with

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Alzheimer's disease and related dementias as an underlying or

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contributing cause during the covid 19 pandemic in the US Jama

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neurology 2023, if you want to look that up and read that for

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yourself, okay, well, that is going to conclude this episode

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for the truth, lies and Alzheimer's Show. I'm your host,

Lisa Skinner:

Lisa Skinner. I will be back next week with another new and

Lisa Skinner:

informative episode and hopefully information that you

Lisa Skinner:

will find worthwhile and valuable. And I want to thank

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all of you again for taking the time to listen today. And you

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know, I've said this many times, there is so much to cover, and

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I'm going to share everything that I can find, to share with

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you through my experience, my knowledge and my research to

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keep you updated on the latest information pertaining to living

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with Alzheimer's disease and related dementia, if you as a

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family member or caregiver are going through this journey now,

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I hope that the tips and strategies and insights that I'm

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able to share with you does make your world a little easier to

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live in, and I hope that it helps you provide a high

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quality, purposeful and meaningful life for your loved

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one living with Alzheimer's disease. So again, remember what

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I like to say, dementia awareness is every day, and the

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kindness is the ability to speak with love, listen with

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compassion and act with patients, all very necessary

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attributes to have in order to outlast Alzheimer's disease.

Lisa Skinner:

Thanks again for being with us, and we'll be back next week with

Lisa Skinner:

another new episode of truth lies in Alzheimer's show.

Lisa Skinner:

Thanks.

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About the Podcast

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Truth, Lies & Alzheimer's

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About your host

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Lisa Skinner, CDP, CDT

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 Skinner’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 they can have a better-quality relationship with their loved ones through education and offering 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.