September 11, 2025 • 21 mins
I would love to hear from you. Send me questions or comments.
The moment when you realize your parent is getting lost in familiar places marks the beginning of a different kind of grief. For those with loved ones experiencing early onset Alzheimer's – dementia that begins before age 65 – this journey starts much sooner than expected.
Drawing from my personal experience with my mother, who began showing symptoms in her mid-60s but wasn't diagnosed until much later, I explore the unique challenges of early onset Alzheimer's. Unlike the typical cases affecting those in their late 70s or 80s, this form strikes approximately 200,000 Americans earlier in life, accounting for about 3% of all Alzheimer's cases. The disease progresses more aggressively in younger patients, yet presents with symptoms that are often missed or misattributed to stress, depression, or normal aging.
Through my mother's story, I share the subtle warning signs we missed – her sudden refusal to drive, blaming it on disliking a new car; her reluctance to shop independently; her inability to follow simple television plots. These weren't just normal forgetfulness but manifestations of a brain changing far too soon. Early onset patients often experience unusual symptoms beyond memory loss, including difficulties processing visual information, recognizing faces (even of spouses and children), and significant declines in language, writing, and executive functioning skills. Perhaps most heartbreaking is that these patients typically maintain good physical health while experiencing profound cognitive decline – my mother remained mobile without assistance despite advanced dementia, surprising even her hospice nurses.
If you're caring for someone with dementia or noticing concerning changes in a loved one, please reach out through comments or my upcoming Instagram page. Share your experiences, suggest topics you'd like covered, or simply connect with others walking this difficult path. Together, we can navigate the complex journey of caregiving, memory loss, and the grief that comes when someone we love begins to forget.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:18):
Yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah,
(00:38):
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, a place where we're going
to talk about dementia,caregiving and grief.
I dedicate this podcast to mymom, who passed away about
almost two years ago now.
It's hard to believe fromdementia, and so I wanted to
talk about today.
So you know, get your cup oftea, cup of coffee, or, if
(01:03):
you're having a really rough day, get a glass of wine, and I
thought today we would talkabout early onset Alzheimer's,
because not a lot of people knowabout it and that's basically
what my mom had.
So there is a small portion ofAlzheimer's patients that are
younger than 65 when the firstsigns of dementia appear,
because most of the time whenyou think of Alzheimer's and
(01:24):
dementia, you think of peoplewho are older, like in their
late 70s and 80s, but it's notalways the case.
So a lot of times, people canget it early.
Scientists are working tounderstand why Alzheimer's can
strike patients earlier thanmost.
With it there is about I mean,the greatest factor is going to
(01:47):
be age for Alzheimer's, butthere is about 3% of the
Alzheimer's patients are roughlyabout 200,000 American adults
that the disease appears beforeage 65.
And that was basically my mom.
My mom died 10 days short ofher 76th birthday, so she was 75
(02:07):
.
And I know she had symptoms forat least 7 to 10 years, so she
was in her mid-60s when shestarted to develop some of these
signs.
So what the experts call thisis younger or early-onset
Alzheimer's and the disease isthe same regardless of when it
strikes.
(02:27):
And the underlining triggersand symptoms can differ from
patient to patient when theyexperience early onset
Alzheimer's compared with lateronset varieties.
So the differences maysometimes the scientists think
maybe that will hold somesecrets or that we're not sure.
So any diagnosis that comesbefore the age 65 is termed
(02:51):
early.
Not all the cases are the same.
An early onset variety of thedisease can be broken into about
two categories that a professorat Washington University talks
about.
The first category, they said,represents an overwhelming 97%
of early onset cases, or knownas sporadic Alzheimer's.
(03:12):
It's named because it shows uprandomly within the population,
likely because of genetics,lifestyle or environmental
factors.
And really, apart from the factthat the patients might start
showing symptoms in their 50s or60s, the symptoms and the
underlying brain changes theylead to, they're more or less
the same as when they strikeolder adults.
(03:35):
So now some research say thatit could be linked to head
trauma or vascular disease, tothe development of the
Alzheimer's at a younger thannormal age.
But there's really noestablished reason why some
people get sporadic Alzheimer'sbefore 65.
Now there is a rarer categoryof people that get it early and
(04:00):
that's referred to as genetic orfamiliar and that can show up
during a person in their 40s or50s or even earlier.
So that's not the one we'retalking about today.
Today we're talking about earlyonset, which is anything before,
like right around 65-ish orbefore that.
Because, like I said, most ofthe time when you think of
Alzheimer's and dementia, youthink of people who are older,
(04:24):
like late 70s and beyond.
That's what you think of.
So that's why a lot of timesyou think, oh, that's just old
age, that's not a big deal, so Iforgot that.
So what?
This is different.
So a lot of times with the earlyonset, obviously forgetfulness
and short-term memory is thefirst or one of the most common
(04:47):
symptoms with it.
I mean, everybody forgets about, everybody worries.
I should say right, Because weall forget at times and then we
think, oh God, you know I forgot.
You know, we all forget wherewe put our keys, we forget why
we walked into a room sometimes,or we forgot the list to go to
the store.
Or, you know, you come backfrom the store and you're like,
oh, I forgot that one item thatI really needed.
(05:09):
That's not what we're talkingabout with forgetfulness.
We're talking about that youforget somebody's birthday or a
graduation, or you go to thestore and you park your car and
you can't find the car, or youget lost going to a place that
you normally go to.
(05:29):
Those are the types of thingsthat we're referring to when
they talk about memory lapsesand forgetfulness.
Or you get disorientated easilywith that.
Another first stage symptom, asthey call it, of both early and
late onset alzheimer's includesproblems with judgment, decision
making, multitasking.
(05:51):
There might be changes in moodof personality.
There could be apathy,depression, irritability or
agitation and anxiety.
They're all common with that.
I mean, think about it.
How could it not change aperson?
Because they start to worry andanxiety.
Think about if, all of a sudden, you went to a store that you
always go to and now you don'tknow how you got there or you
(06:14):
don't know where the car is, oryou don't know how to get home.
You feel lost for those fewminutes.
Think about how you would feelwith that.
So how could your personalitynot change?
And so maybe you stopped goingto a lot of places, which is
kind of what my mom did.
She just my mom was never a bigdriver.
She would never drive on theexpressways or anything like
(06:35):
that, but she would drive to thelibrary, to the stores that
were close by to work, but shewould drive to the library, to
the stores that were close by towork.
And I remember, and thinkingback now, I realized that this
was probably a big sign, but Ididn't realize it at the time.
So my dad had bought a new carand she went with him to get the
car.
(06:55):
And after he bought the car,she said that she hated that car
, it was too big and she wasnever going to drive that car
again.
And she just stopped driving.
And thinking back now, I thinkI wonder if she got lost or got
disorientated when she wasdriving and she just stopped
(07:16):
driving.
That was her answer.
I mean, like I said, she neverdrove a lot anyway, but she just
blamed it on my dad and blamedit on the car.
That's why she couldn't driveanymore, because she hated the
car.
It was too big.
And I could see my mom doingthat, like if she got
disorientated or she got lostbecause she was always
(07:36):
directionally challenged and soit wouldn't.
We always would laugh that shewould get lost.
But I think it was more thanthat.
I also remember I had surgeryand I was up in the room and my
mom had been with me the wholetime and I said Mom, why don't
you go to the cafeteria and whydon't you go get a Coke?
(07:58):
Because she always loved herpop.
And I said, it'll be OK, I'llbe here, I'm just going to rest,
go on, go get a Coke.
And she walked out and she cameback a few minutes later
without the pop and I realized Ibet she got lost or got
disorientated and she came back.
Also, her and I used to alwaysgo shopping and you know it
(08:20):
would always be like we'd be inthe store and I'd go to my
section.
She'd go to her section and Iremember one of the last times
we went shopping together shejust stayed right by me.
She didn't want to go look, andI realized now it was because
she needed I was the anchor.
She needed to know where I wasin case she felt lost or
disorientated with it.
(08:40):
I mean, obviously there's othersymptoms too.
Some aren't as common and someare more particular to early
onset, like some of the youngerpatients, for example, might
develop a language variant whichmakes it difficult for them to
express their thoughts and words.
A lot of times, people affectedby the struggle come up with
common words, especially thenames of everyday objects.
You know, I mean, we all havethat sometimes, where we can't
(09:06):
come up with the word or we makeup a word for something else
with it.
I remember too, my mom.
I don't know where she hadgotten this cookie.
It was one of those reallypretty decorated cookies, but
she had it sitting out like itwas a knickknack and when I said
to her, oh, where'd you getthis cookie from?
She was like that's not acookie.
I don't know what she thoughtit was, but it wasn't that.
So a lot of times too, theremight not be a loss of
(09:31):
recognition right away, but,like an example is, say, the
patient looks at a sandwich andhe or she might know what it is
and that they're supposed to eatit, but they might not be able
to get the word for it theydon't know what to call it for.
That A lot of times, too, withearly onset patients.
They also experience difficultyin processing visual
information, so they only seewhat's centered in their visual
(09:54):
field and they lose awareness ofthe rest.
So this could be like thatcould lead to tripping,
difficulty finding items evenwhen they're in plain sight, or
problems with driving with it.
Others might lose the abilityto recognize faces, including
those of their spouse and theirkids with it.
(10:15):
They did a 2016 study out of theUniversity of Montreal about
with early onset patients in theinitial stages of the disease,
and they also experienced moresevere decline in writing, math
skills and executive functioning.
It's a category of high-levelcognitive processes that include
planning and coordination.
When they did the brain scansof patients with early onset
(10:37):
Alzheimer's, they revealed thedifferences.
So they saw protein plaques andtingles, as well as reduced
brain volume, arecharacteristics of Alzheimer's,
but in early onset patients, allthese signs may show up in
unusual areas of the brain,including some that are not
related to memory, which makessense when you really start to
(10:58):
think about those things.
My mom, before she was inmemory care, she went to go get
a CT scan of her brain and shehad a hard time signing her name
.
She was so nervous she couldn'teven read the the paperwork and
I had to read it for her andshow her where to sign her name.
(11:19):
But she really didn't know howto do it anymore.
And what they have found withthis early onset is that the
disease is much more aggressive.
It's difficult to put specifictimelines for the form of the
disease because obviously withdementia and Alzheimer's it
varies from patient to patient.
But the progression of symptomsis usually much faster compared
(11:41):
to the late-onset Alzheimer's.
Now, not all aspects of thedisease are more severe.
In the early-onset variety,cognitive symptoms worsen more
quickly.
Younger Alzheimer's patientstend to be otherwise healthy,
free from heart disease,vascular disease and other
(12:01):
ailments that are often presentin patients who develop
Alzheimer's late in life.
Now the Alzheimer's willeventually lead to death,
usually due to infections, to anoverall weakening of the body.
But these patients may live forseveral years in good physical
health but with very severedementia.
And that was my mom.
I remember towards the end thehospice nurse was.
(12:24):
So she told me over and overagain how highly unusual my mom
was because she was still mobile, she could walk, she didn't
need a walker or anything likethat given the state of her
dementia, and that's becausehers was early onset.
I believe with that Because,like I said, my mom whenever I
got diagnosed she refused to getdiagnosed until it was too late
(12:47):
and she didn't know who me andmy dad were.
And then we had to take her tothe emergency room.
And a lot of times with this isthink about it.
Most primary care physicians aretrained in the common signs and
symptoms of Alzheimer's butthey're used to it in their
older patients.
They're not used to it to seethe diagnosis, the disease in
(13:07):
men and women in their 40s, 50sand 60s.
So it's harder to get thatdiagnosis with it because you're
not thinking about it, thatthat's what it could be, because
you're not thinking about it,that that's what it could be For
a lot of times.
Their symptoms are sometimesunusual or atypical, so the
doctor doesn't really know whatto look for.
It often takes the youngerpatients years after the onset
(13:30):
of their symptoms to get anaccurate diagnosis and many are
initially told they havedepression or some other
neurological condition.
And that was kind of well.
Like I said, my mom refused togo to the doctor.
I tried, I tried to get her togo to get diagnosed and she
wouldn't.
I took her to our primary caredoctor and you know he tried to
give her like just the10-question memory test and she
(13:52):
refused to answer it.
She absolutely refused toanswer it.
And I tried to take her to aneurologist and she hung up.
She hung up on when they triedto confirm the appointment she
was not going.
So for the early onset patients, they typically have more
traditional Alzheimer's symptomslike short-term memory
(14:12):
struggles.
A lot of times they'rediagnosed and they can come much
more quickly with it.
Most of the time the diagnosisis made by a neurologist based
on a person's symptoms andfamily history.
But those are only still partof the diagnostic mix.
There's other things you canlook at too.
They do have some tests thatare now available to identify
(14:33):
the presence of plaque andtangles in the brain of living
people.
They usually use PET scans orspinal fluids analysis.
There's also genetic testingthat can reveal the mutation
linked to the rare, familiarform of early onset Alzheimer's.
I mean, you know, like I couldtake a blood test if I wanted to
as well.
But then part of me is justlike, do I really want to know?
(14:55):
I don't know.
It's one of those weird things.
It's like do you want to takethat blood test and find out
that you might have it, or doyou just want to, like, see what
happens?
I don't know.
It's one of those.
Unfortunately, the outcome isthe same whether it's early
onset or it's later onset.
There's just there's no curefor Alzheimer's.
(15:17):
So the life expectancy doesn'tvary much for the younger
patients compared to with peoplewho are in their 70s or 80s.
The average life expectancy foran Alzheimer's patient is
roughly 7 to 12 years after adiagnosis, but again, this can
vary greatly depending on yourdiagnosis and the person.
That's the thing about dementiaand Alzheimer's Every single
(15:41):
person is a little different.
There's no set course of it.
There's no predictability.
Yes, there are things that aresimilar and symptoms and things
that happen when their brainshuts down, but it's all
different for every person.
So that's why doctors have sucha hard time being able to tell
you what the progression is andthat's why it's so hard as a
(16:02):
caregiver, because you justdon't know every day is
different and you don't knowwhat will happen with it and
there's just nothing a doctorcan really do to cure or slow
down the disease.
There are some medications thatthey can prescribe that are
supposed to slow the progression, but at a certain point you
(16:25):
know, if you don't get thosediagnosed early enough, I don't
know how well they work for it.
I mean, obviously it can't hurtthe person but again, you have
to get it diagnosed for it toprobably really make that
difference for it.
And sometimes the medicationscan reduce the symptoms and they
can improve attention andoffsetting some of the early
memory difficulty.
(16:46):
They found that the drugs oftenwork more effectively in the
younger patients than in theolder patients.
They found Now there are thedrug companies are always
working on studies and to findthere are some studies that are
they're working on for the earlyonset Alzheimer's to better
understand the symptoms and riskfactors to provide care.
(17:08):
But it's hard for patients andcaregivers struggling with the
early onset Alzheimer's.
So there are different studiesthat people can do.
You can look those up as well.
Alzheimer's.
So there are different studiesthat people can do.
You can look those up as well.
There is two large studies thatare ongoing on the longitudinal
(17:29):
or longitudinal or leads earlyonset AD study and the
dominantly inherited Alzheimernetwork or DIAN study, if that's
something that you'reinterested in.
You know the more they study it, the more they can find
information.
Hopefully at one point there'llbe some drugs or there'll be
some diagnosis, butunfortunately early onset is the
same as the later onset, it'sjust that it progresses more
(17:53):
aggressively in the youngerperson.
And, like I said, that'sbasically what happened with my
mom.
She, I know she's, I know shehad it at least seven to 10
years before she actually,before she actually got
diagnosed.
And when I look back, like Isaid, she couldn't even follow
TV anymore, not even Hallmark,when those are easy to follow.
(18:15):
She and she was always oneperson who could, always she
could solve the mystery while wewere watching it or she stopped
reading and those types ofthings.
So what you need to look atwith people, you know, like I
said, forgetting things isnormal, but it's when they
forget birthdays or graduationsor important dates or they
(18:36):
forget to pay bills and theywere always on time with stuff,
they forget important things.
Their personality changes.
Like with my mom.
She always made such a big dealabout birthdays and there were
just little things that I couldtell she didn't remember or she
was different.
She always kind of leaned alittle bit towards a little
(18:57):
depressiveness or depression,but it seemed like it was more.
She didn't want to go out asmuch for that she, she wanted to
stay in more and more, eventhough that was closer to her
personality.
She wasn't a big group personbut she wanted to stay home
because I feel like I think it'sbecause she felt safe there.
She felt safe that that's whereher comfort was and she knew
(19:21):
she was safe in the house andshe knew where things were and
she was familiar with thosetypes of things.
So those are things you want tolook at.
With symptoms, especially withthe early onset Alzheimer's with
it, and, like I said, maybe atsome point they will find
medicines or a cure for thisawful, awful disease, because
(19:44):
it's a very hard disease on thecaretakers as well too.
It's not something that's easyto take care of, it just isn't.
It isn't like taking care ofcancer and things like that.
So well, hopefully I've givenyou some good information today
(20:08):
as we continue, please reach outto me.
I love if you'd reach out andtalk to me.
Drop me a comment on my pagefor that.
I'm hoping to get an Instagramaccount coming up for this as
well, so you can kind of talkwith me and let me know what
topics you'd like me to cover orsomeone to interview, or just
what you like, what you didn'tlike, what we can do for it, and
(20:31):
so I hope you enjoyed your cupof tea, your cup of coffee or
your glass of wine, if youneeded to, and join me next time
right here on Patty's Place.
Yeah, yeah, yeah, yeah, yeah, yeah, yeah, yeah,
(00:38):
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, yeah, yeah, yeah, yeah,
yeah, yeah, yeah, yeah, yeah,yeah, a place where we're going
to talk about dementia,caregiving and grief.
I dedicate this podcast to mymom, who passed away about
almost two years ago now.
It's hard to believe fromdementia, and so I wanted to
talk about today.
So you know, get your cup oftea, cup of coffee, or, if
(01:03):
you're having a really rough day, get a glass of wine, and I
thought today we would talkabout early onset Alzheimer's,
because not a lot of people knowabout it and that's basically
what my mom had.
So there is a small portion ofAlzheimer's patients that are
younger than 65 when the firstsigns of dementia appear,
because most of the time whenyou think of Alzheimer's and
(01:24):
dementia, you think of peoplewho are older, like in their
late 70s and 80s, but it's notalways the case.
So a lot of times, people canget it early.
Scientists are working tounderstand why Alzheimer's can
strike patients earlier thanmost.
With it there is about I mean,the greatest factor is going to
(01:47):
be age for Alzheimer's, butthere is about 3% of the
Alzheimer's patients are roughlyabout 200,000 American adults
that the disease appears beforeage 65.
And that was basically my mom.
My mom died 10 days short ofher 76th birthday, so she was 75
(02:07):
.
And I know she had symptoms forat least 7 to 10 years, so she
was in her mid-60s when shestarted to develop some of these
signs.
So what the experts call thisis younger or early-onset
Alzheimer's and the disease isthe same regardless of when it
strikes.
(02:27):
And the underlining triggersand symptoms can differ from
patient to patient when theyexperience early onset
Alzheimer's compared with lateronset varieties.
So the differences maysometimes the scientists think
maybe that will hold somesecrets or that we're not sure.
So any diagnosis that comesbefore the age 65 is termed
(02:51):
early.
Not all the cases are the same.
An early onset variety of thedisease can be broken into about
two categories that a professorat Washington University talks
about.
The first category, they said,represents an overwhelming 97%
of early onset cases, or knownas sporadic Alzheimer's.
(03:12):
It's named because it shows uprandomly within the population,
likely because of genetics,lifestyle or environmental
factors.
And really, apart from the factthat the patients might start
showing symptoms in their 50s or60s, the symptoms and the
underlying brain changes theylead to, they're more or less
the same as when they strikeolder adults.
(03:35):
So now some research say thatit could be linked to head
trauma or vascular disease, tothe development of the
Alzheimer's at a younger thannormal age.
But there's really noestablished reason why some
people get sporadic Alzheimer'sbefore 65.
Now there is a rarer categoryof people that get it early and
(04:00):
that's referred to as genetic orfamiliar and that can show up
during a person in their 40s or50s or even earlier.
So that's not the one we'retalking about today.
Today we're talking about earlyonset, which is anything before,
like right around 65-ish orbefore that.
Because, like I said, most ofthe time when you think of
Alzheimer's and dementia, youthink of people who are older,
(04:24):
like late 70s and beyond.
That's what you think of.
So that's why a lot of timesyou think, oh, that's just old
age, that's not a big deal, so Iforgot that.
So what?
This is different.
So a lot of times with the earlyonset, obviously forgetfulness
and short-term memory is thefirst or one of the most common
(04:47):
symptoms with it.
I mean, everybody forgets about, everybody worries.
I should say right, Because weall forget at times and then we
think, oh God, you know I forgot.
You know, we all forget wherewe put our keys, we forget why
we walked into a room sometimes,or we forgot the list to go to
the store.
Or, you know, you come backfrom the store and you're like,
oh, I forgot that one item thatI really needed.
(05:09):
That's not what we're talkingabout with forgetfulness.
We're talking about that youforget somebody's birthday or a
graduation, or you go to thestore and you park your car and
you can't find the car, or youget lost going to a place that
you normally go to.
(05:29):
Those are the types of thingsthat we're referring to when
they talk about memory lapsesand forgetfulness.
Or you get disorientated easilywith that.
Another first stage symptom, asthey call it, of both early and
late onset alzheimer's includesproblems with judgment, decision
making, multitasking.
(05:51):
There might be changes in moodof personality.
There could be apathy,depression, irritability or
agitation and anxiety.
They're all common with that.
I mean, think about it.
How could it not change aperson?
Because they start to worry andanxiety.
Think about if, all of a sudden, you went to a store that you
always go to and now you don'tknow how you got there or you
(06:14):
don't know where the car is, oryou don't know how to get home.
You feel lost for those fewminutes.
Think about how you would feelwith that.
So how could your personalitynot change?
And so maybe you stopped goingto a lot of places, which is
kind of what my mom did.
She just my mom was never a bigdriver.
She would never drive on theexpressways or anything like
(06:35):
that, but she would drive to thelibrary, to the stores that
were close by to work, but shewould drive to the library, to
the stores that were close by towork.
And I remember, and thinkingback now, I realized that this
was probably a big sign, but Ididn't realize it at the time.
So my dad had bought a new carand she went with him to get the
car.
(06:55):
And after he bought the car,she said that she hated that car
, it was too big and she wasnever going to drive that car
again.
And she just stopped driving.
And thinking back now, I thinkI wonder if she got lost or got
disorientated when she wasdriving and she just stopped
(07:16):
driving.
That was her answer.
I mean, like I said, she neverdrove a lot anyway, but she just
blamed it on my dad and blamedit on the car.
That's why she couldn't driveanymore, because she hated the
car.
It was too big.
And I could see my mom doingthat, like if she got
disorientated or she got lostbecause she was always
(07:36):
directionally challenged and soit wouldn't.
We always would laugh that shewould get lost.
But I think it was more thanthat.
I also remember I had surgeryand I was up in the room and my
mom had been with me the wholetime and I said Mom, why don't
you go to the cafeteria and whydon't you go get a Coke?
(07:58):
Because she always loved herpop.
And I said, it'll be OK, I'llbe here, I'm just going to rest,
go on, go get a Coke.
And she walked out and she cameback a few minutes later
without the pop and I realized Ibet she got lost or got
disorientated and she came back.
Also, her and I used to alwaysgo shopping and you know it
(08:20):
would always be like we'd be inthe store and I'd go to my
section.
She'd go to her section and Iremember one of the last times
we went shopping together shejust stayed right by me.
She didn't want to go look, andI realized now it was because
she needed I was the anchor.
She needed to know where I wasin case she felt lost or
disorientated with it.
(08:40):
I mean, obviously there's othersymptoms too.
Some aren't as common and someare more particular to early
onset, like some of the youngerpatients, for example, might
develop a language variant whichmakes it difficult for them to
express their thoughts and words.
A lot of times, people affectedby the struggle come up with
common words, especially thenames of everyday objects.
You know, I mean, we all havethat sometimes, where we can't
(09:06):
come up with the word or we makeup a word for something else
with it.
I remember too, my mom.
I don't know where she hadgotten this cookie.
It was one of those reallypretty decorated cookies, but
she had it sitting out like itwas a knickknack and when I said
to her, oh, where'd you getthis cookie from?
She was like that's not acookie.
I don't know what she thoughtit was, but it wasn't that.
So a lot of times too, theremight not be a loss of
(09:31):
recognition right away, but,like an example is, say, the
patient looks at a sandwich andhe or she might know what it is
and that they're supposed to eatit, but they might not be able
to get the word for it theydon't know what to call it for.
That A lot of times, too, withearly onset patients.
They also experience difficultyin processing visual
information, so they only seewhat's centered in their visual
(09:54):
field and they lose awareness ofthe rest.
So this could be like thatcould lead to tripping,
difficulty finding items evenwhen they're in plain sight, or
problems with driving with it.
Others might lose the abilityto recognize faces, including
those of their spouse and theirkids with it.
(10:15):
They did a 2016 study out of theUniversity of Montreal about
with early onset patients in theinitial stages of the disease,
and they also experienced moresevere decline in writing, math
skills and executive functioning.
It's a category of high-levelcognitive processes that include
planning and coordination.
When they did the brain scansof patients with early onset
(10:37):
Alzheimer's, they revealed thedifferences.
So they saw protein plaques andtingles, as well as reduced
brain volume, arecharacteristics of Alzheimer's,
but in early onset patients, allthese signs may show up in
unusual areas of the brain,including some that are not
related to memory, which makessense when you really start to
(10:58):
think about those things.
My mom, before she was inmemory care, she went to go get
a CT scan of her brain and shehad a hard time signing her name
.
She was so nervous she couldn'teven read the the paperwork and
I had to read it for her andshow her where to sign her name.
(11:19):
But she really didn't know howto do it anymore.
And what they have found withthis early onset is that the
disease is much more aggressive.
It's difficult to put specifictimelines for the form of the
disease because obviously withdementia and Alzheimer's it
varies from patient to patient.
But the progression of symptomsis usually much faster compared
(11:41):
to the late-onset Alzheimer's.
Now, not all aspects of thedisease are more severe.
In the early-onset variety,cognitive symptoms worsen more
quickly.
Younger Alzheimer's patientstend to be otherwise healthy,
free from heart disease,vascular disease and other
(12:01):
ailments that are often presentin patients who develop
Alzheimer's late in life.
Now the Alzheimer's willeventually lead to death,
usually due to infections, to anoverall weakening of the body.
But these patients may live forseveral years in good physical
health but with very severedementia.
And that was my mom.
I remember towards the end thehospice nurse was.
(12:24):
So she told me over and overagain how highly unusual my mom
was because she was still mobile, she could walk, she didn't
need a walker or anything likethat given the state of her
dementia, and that's becausehers was early onset.
I believe with that Because,like I said, my mom whenever I
got diagnosed she refused to getdiagnosed until it was too late
(12:47):
and she didn't know who me andmy dad were.
And then we had to take her tothe emergency room.
And a lot of times with this isthink about it.
Most primary care physicians aretrained in the common signs and
symptoms of Alzheimer's butthey're used to it in their
older patients.
They're not used to it to seethe diagnosis, the disease in
(13:07):
men and women in their 40s, 50sand 60s.
So it's harder to get thatdiagnosis with it because you're
not thinking about it, thatthat's what it could be, because
you're not thinking about it,that that's what it could be For
a lot of times.
Their symptoms are sometimesunusual or atypical, so the
doctor doesn't really know whatto look for.
It often takes the youngerpatients years after the onset
(13:30):
of their symptoms to get anaccurate diagnosis and many are
initially told they havedepression or some other
neurological condition.
And that was kind of well.
Like I said, my mom refused togo to the doctor.
I tried, I tried to get her togo to get diagnosed and she
wouldn't.
I took her to our primary caredoctor and you know he tried to
give her like just the10-question memory test and she
(13:52):
refused to answer it.
She absolutely refused toanswer it.
And I tried to take her to aneurologist and she hung up.
She hung up on when they triedto confirm the appointment she
was not going.
So for the early onset patients, they typically have more
traditional Alzheimer's symptomslike short-term memory
(14:12):
struggles.
A lot of times they'rediagnosed and they can come much
more quickly with it.
Most of the time the diagnosisis made by a neurologist based
on a person's symptoms andfamily history.
But those are only still partof the diagnostic mix.
There's other things you canlook at too.
They do have some tests thatare now available to identify
(14:33):
the presence of plaque andtangles in the brain of living
people.
They usually use PET scans orspinal fluids analysis.
There's also genetic testingthat can reveal the mutation
linked to the rare, familiarform of early onset Alzheimer's.
I mean, you know, like I couldtake a blood test if I wanted to
as well.
But then part of me is justlike, do I really want to know?
(14:55):
I don't know.
It's one of those weird things.
It's like do you want to takethat blood test and find out
that you might have it, or doyou just want to, like, see what
happens?
I don't know.
It's one of those.
Unfortunately, the outcome isthe same whether it's early
onset or it's later onset.
There's just there's no curefor Alzheimer's.
(15:17):
So the life expectancy doesn'tvary much for the younger
patients compared to with peoplewho are in their 70s or 80s.
The average life expectancy foran Alzheimer's patient is
roughly 7 to 12 years after adiagnosis, but again, this can
vary greatly depending on yourdiagnosis and the person.
That's the thing about dementiaand Alzheimer's Every single
(15:41):
person is a little different.
There's no set course of it.
There's no predictability.
Yes, there are things that aresimilar and symptoms and things
that happen when their brainshuts down, but it's all
different for every person.
So that's why doctors have sucha hard time being able to tell
you what the progression is andthat's why it's so hard as a
(16:02):
caregiver, because you justdon't know every day is
different and you don't knowwhat will happen with it and
there's just nothing a doctorcan really do to cure or slow
down the disease.
There are some medications thatthey can prescribe that are
supposed to slow the progression, but at a certain point you
(16:25):
know, if you don't get thosediagnosed early enough, I don't
know how well they work for it.
I mean, obviously it can't hurtthe person but again, you have
to get it diagnosed for it toprobably really make that
difference for it.
And sometimes the medicationscan reduce the symptoms and they
can improve attention andoffsetting some of the early
memory difficulty.
(16:46):
They found that the drugs oftenwork more effectively in the
younger patients than in theolder patients.
They found Now there are thedrug companies are always
working on studies and to findthere are some studies that are
they're working on for the earlyonset Alzheimer's to better
understand the symptoms and riskfactors to provide care.
(17:08):
But it's hard for patients andcaregivers struggling with the
early onset Alzheimer's.
So there are different studiesthat people can do.
You can look those up as well.
Alzheimer's.
So there are different studiesthat people can do.
You can look those up as well.
There is two large studies thatare ongoing on the longitudinal
(17:29):
or longitudinal or leads earlyonset AD study and the
dominantly inherited Alzheimernetwork or DIAN study, if that's
something that you'reinterested in.
You know the more they study it, the more they can find
information.
Hopefully at one point there'llbe some drugs or there'll be
some diagnosis, butunfortunately early onset is the
same as the later onset, it'sjust that it progresses more
(17:53):
aggressively in the youngerperson.
And, like I said, that'sbasically what happened with my
mom.
She, I know she's, I know shehad it at least seven to 10
years before she actually,before she actually got
diagnosed.
And when I look back, like Isaid, she couldn't even follow
TV anymore, not even Hallmark,when those are easy to follow.
(18:15):
She and she was always oneperson who could, always she
could solve the mystery while wewere watching it or she stopped
reading and those types ofthings.
So what you need to look atwith people, you know, like I
said, forgetting things isnormal, but it's when they
forget birthdays or graduationsor important dates or they
(18:36):
forget to pay bills and theywere always on time with stuff,
they forget important things.
Their personality changes.
Like with my mom.
She always made such a big dealabout birthdays and there were
just little things that I couldtell she didn't remember or she
was different.
She always kind of leaned alittle bit towards a little
(18:57):
depressiveness or depression,but it seemed like it was more.
She didn't want to go out asmuch for that she, she wanted to
stay in more and more, eventhough that was closer to her
personality.
She wasn't a big group personbut she wanted to stay home
because I feel like I think it'sbecause she felt safe there.
She felt safe that that's whereher comfort was and she knew
(19:21):
she was safe in the house andshe knew where things were and
she was familiar with thosetypes of things.
So those are things you want tolook at.
With symptoms, especially withthe early onset Alzheimer's with
it, and, like I said, maybe atsome point they will find
medicines or a cure for thisawful, awful disease, because
(19:44):
it's a very hard disease on thecaretakers as well too.
It's not something that's easyto take care of, it just isn't.
It isn't like taking care ofcancer and things like that.
So well, hopefully I've givenyou some good information today
(20:08):
as we continue, please reach outto me.
I love if you'd reach out andtalk to me.
Drop me a comment on my pagefor that.
I'm hoping to get an Instagramaccount coming up for this as
well, so you can kind of talkwith me and let me know what
topics you'd like me to cover orsomeone to interview, or just
what you like, what you didn'tlike, what we can do for it, and
(20:31):
so I hope you enjoyed your cupof tea, your cup of coffee or
your glass of wine, if youneeded to, and join me next time
right here on Patty's Place.
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Las Culturistas with Matt Rogers and Bowen Yang
Ding dong! Join your culture consultants, Matt Rogers and Bowen Yang, on an unforgettable journey into the beating heart of CULTURE. Alongside sizzling special guests, they GET INTO the hottest pop-culture moments of the day and the formative cultural experiences that turned them into Culturistas. Produced by the Big Money Players Network and iHeartRadio.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.