May 16, 2025 • 38 mins
In this episode of Advice From Your Advocates, elder law attorney Bob Mannor talks with Douglas Lobdell, Program Manager at the Alzheimer’s Association, about the wide range of support available for families facing dementia—including those dealing with more than just Alzheimer’s.
Douglas shares insights from his years in senior care and highlights essential tools like the 24/7 helpline (800-272-3900), personalized care consultations, caregiver support groups, and educational programs. They also explore creative approaches to care, including how music and art therapy can tap into preserved areas of the brain.
Whether you’re a caregiver, elder care professional, or just planning for the future, this episode is packed with practical resources and compassionate guidance for every stage of the dementia journey.
Host: Attorney Bob Mannor
Guest: Douglas Lobdell, Program Manager with Alzheimer's Association
Executive Producer: Savannah Meksto
Assistant Producers: Samantha Noah, Shalene Gaul
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ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
You're listening to Advice from your Advocates, a
show where we provide elder lawadvice to professionals who work
with the elderly and theirfamilies.
Speaker 2 (00:10):
Welcome back to Advice from your Advocates.
I'm Bob Manor.
I'm a board-certified elder lawattorney here in Michigan and
I'm really excited about ourguest today.
So we have Douglas Lobdell fromthe Alzheimer's Association.
So we have Douglas Lobdell fromthe Alzheimer's Association.
Douglas has been a friend ofManor Law Group for I don't know
at least 10 years and he's avery passionate advocate for
(00:34):
those families that are dealingwith someone with dementia.
I'm really excited to haveDouglas here.
Welcome, doug.
Speaker 1 (00:45):
Can you just give us an idea of who you are and what
you do at the Alzheimer'sAssociation.
So my title with theAlzheimer's Association is
program manager, which doesn'treally clarify anything.
What that looks like in realityis recruiting, managing
volunteers, making sure thatsupport groups are happening and
available in different areas,as well as education programs.
But a large part of my rolealso includes making sure that
(01:05):
people know we're here and whatwe can do for folks that need us
in sometimes their darkesttimes, when they're dealing with
this disease and others.
Speaker 2 (01:13):
Absolutely, and you know, you and I have talked
about this frequently, about howso many people don't have an
understanding of all of theoptions and services that the
Alzheimer's Association offers,which is, you know, it's some
really important services andhelp.
Before we get into thespecifics of that, I want to ask
(01:37):
this very important question Doyou have to have Alzheimer's to
benefit from these programs, ordoes it cover all forms of
dementia?
Speaker 1 (01:45):
No, the answer is all forms of dementia.
If you were to look at my W-2,since everybody just got theirs
in the mail the organization Iwork for is actually the
Alzheimer's disease and allother related dementias, but
that's not quite as catchy on aflyer.
So the Alzheimer's Associationrolls off the tongue a little
bit easier.
Plus, it is the most commontype of dementia that we find.
Speaker 2 (02:07):
Yeah.
Speaker 1 (02:08):
But yes, any form of dementia or even just mild
cognitive impairment issues,they can provide some help.
Speaker 2 (02:14):
So I want to put an emphasis on that, about how the
Alzheimer's Association is allforms of dementia and I think
some of our listeners stillmight be have a little confusion
about that that dementia is adisease in and of itself.
And the reality is dementia isa category of diseases.
(02:35):
Right, it's so.
It's like saying somebody hascancer, okay.
We always ask then, what typeof cancer?
Unfortunately and I, you know,my staff and I, my team and I
have been we're talking aboutthis just last week I do feel
like there's a bit of ageismwhen it comes to the medical
staff and dementia is oftenwe'll get this diagnosis of
(02:55):
generalized dementia and thatthere's not any further analysis
of.
Okay, is it vascular, is itAlzheimer's, is it frontal,
temporal, is it Lewy body, youknow, and those things, the
diagnosis.
Certainly, if we had cancer, wewould want a very clear
diagnosis of what that is andwhat symptoms we're going to
(03:16):
have.
And unfortunately, sometimeswith dementia it is not.
It is just saying, okay, well,this person has generalized
dementia, okay, let's dig alittle deeper and figure out
what type of that is.
Just saying, okay, well, thisperson has generalized dementia,
okay, let's dig a little deeperand figure out what type of
that is?
Now, I know that the point thatyou're making is it doesn't
matter Alzheimer's Associationand related dementias are here
for everyone.
But I do like to make thatpoint that I'm always
(03:38):
recommending to families thatthey try to dig deeper and say,
okay, but what type?
Speaker 1 (03:42):
of dementia.
Do you think this is A showwhere we provide elder law
advice to professionals who workwith the elderly and their
families?
For a very long time and you'vebeen around long enough to see
this as well that F30unspecified dementia with
behavioral disturbance diagnosiswas all too common, right that?
was you got, send you home goodluck.
But where we are as far asresearch and treatment goes, the
(04:09):
importance of an accuratediagnosis is probably never been
more critical, because thetreatments that are coming out
for Alzheimer's disease will nothelp you if you have Lewy
body's dementia or vascular.
Similarly, we're going to treatvascular and Lewy body dementia
differently, not just onsymptom you know, symptom
management but as well asmedications that we administer
and things like that.
And you made the perfectanalogy there.
You wouldn't just accept theanswer I have cancer and call it
(04:31):
good because we treat everykind of cancer different, just
like we need to treat every kindof dementia different.
So you'll see, probably overthe next few years, a little bit
of an increase.
I don't want to use the wordmarketing campaign, but that's
the word that comes to mind fromthe association about the
importance of not just acceptingthat diagnosis and getting more
questions answered from yourdoctor so that your next steps
(04:51):
aren't steps into the dark.
Speaker 2 (04:53):
That's great.
I'm really glad to hear thatbecause I think that's so
important.
Let's get into some of thefirst of all, I know your
background.
If you want to give us a littlebit more about your background,
you've worked in all stages, Ithink, or many stages of helping
families deal with long-termcare issues and you've been a
(05:15):
passionate advocate all the wayalong.
You know you and I's firstinteraction was you volunteering
for the Alzheimer's Associationand not getting paid for it,
and it just shows how you knowthat this is an issue for you
that you're passionate about andI'm really glad that you're in
your current role.
(05:36):
But tell us a little bit aboutyour background.
Speaker 1 (05:38):
So I, by degree and licensure, I'm a social worker,
graduated in 2012.
And since then I haveexclusively worked in senior
health care of some sort,whether it's in skilled nursing
facilities, assisted living,memory care settings, and then,
inevitably, with the association.
That's the only thing that Iknow how to do.
Reality and um and like yousaid, we met the first time.
(05:59):
Well, doing math, it's a bignumber.
Now I want to say it's close to15 years ago, probably yeah, I
started volunteering with theAssociation for the Walk
Planning side, and I volunteeredstraight for 14 years before a
position became available that Iwas like it's time that I take
this jump and actually work forthem.
So it's definitely somethingthat I know, I love, I'm
(06:24):
passionate about, and I alsowant to see improvement and
change in as far as making surepeople aren't forgotten, because
we all know dementia isn't anormal part of aging.
It's a disease and it'ssomething that needs to be faced
, not ignored.
Speaker 2 (06:39):
So if we can get over that stigma, even better.
I was at a national conferencethis weekend, this past weekend,
that deals with long-term careand dementia and how lawyers can
help with that, and so one ofthe conversations that came up
is a sad conversation but it's atrue conversation and I think
we're all exposed to socialmedia.
(07:02):
We have TikTok running on,flipping, know, flipping through
the TikTok, flipping throughwhatever Facebook, whatever is
your preferred social media.
But every month it seems thereis some kind of hype about some
new drug or some new treatment.
And the conversation we werehaving at this conference was
it's not, we're not going to.
I mean, obviously Alzheimer'sAssociation talks about you know
(07:22):
that we're trying to find acure.
Not, we're not going to.
I mean, obviously Alzheimer'sAssociation talks about you know
that we're trying to find acure, but that's not going to
happen tomorrow.
And so the false hope I thinkthat sometimes comes out when
there's all this hype about thisdrug or that drug or whatever
it is, and of course we'realways working towards that.
But the sad reality is, forthose that are currently
(07:44):
experiencing dementia, they'renot probably going to benefit
from whatever medical advancesthat we have in 10, 20, 100
years and that we have to berealistic about the idea that if
we have a form of dementia,it's probably with the exception
of those short-term likedelirium it's probably only
(08:04):
going to get worse, that when wesee this stuff on social media
or elsewhere.
It isn't likely to provide acure in six months, right.
Speaker 1 (08:14):
So a ton has happened in research lately.
If I had two, three hours ofyour time we could go over a lot
of that stuff, but I don't.
I will say, with the currentmedication treatments that are
coming out within the lastcouple of years, lekembe and
then Denonimab are the two mainones that are showing an actual
impact on the biology of thedisease.
You know, for years themedications have treated
(08:36):
symptoms Thinking back to 1996,when the very first ones came
out.
That's all symptom management.
At the end of the day itdoesn't actually affect the
amyloid plaques and tau tanglesthat are damaging the brain.
These new medications are,which is awesome because it's,
you know, something to beoptimistic about those
medications.
They'll have to be administeredearly in the disease process
(08:56):
and they based on research.
You know we're two, three yearsinto some of these medications.
There's not a ton of informationon longer term effects of it
but delaying symptoms up to sixto eight months, which for a
family and you know this,someone with a fresh diagnosis
six to eight months is alifetime.
From a researcher standpointthey might not see that as
relevant.
(09:17):
But for a family to be able tohave that extra six months or
more to plan for the future, tojust enjoy life in the present
before symptoms continue toprogress.
That can make or break a person.
But you're correct, becausesomeone right now in a late
stage of dementia, isn'teligible for that medication and
realistically, on a medicationthat is focused on that
(09:38):
pathology.
You know, clearing the plaquesand tangles if the damage is
already done in the brain.
We can't regrow the brain, notyet at least.
So those folks are still goingto benefit from the Alzheimer's
Association, but they're goingto benefit from the programs and
services side, which is thesupport and education and beyond
.
Speaker 2 (09:54):
Well, that's a great segue into what I want to make
sure that we have an opportunityto talk about, which is all of
the services that theAlzheimer's Association provides
.
Let's start with one and thenwe'll go into a lot of the
others.
But the hotline that you guyshave, I think, is really great,
(10:14):
because when we have a caregiverspouse or a caregiver child, it
can be really overwhelming andthe idea that I believe and you
can correct me, douglas, if I'mwrong this is a 24-hour hotline
that they can call and talk tosomebody that understands, you
know, that understands howdifficult and how challenging it
(10:35):
is to care for a loved one withdementia.
So tell us a little bit more,if you will, about that, I
believe.
24-hour hotline.
Speaker 1 (10:43):
Yeah, so our 24-hour helpline, 800-272-3900.
It's a number worth rememberingand it's exactly that 24 hours
a day, seven days a week.
It can be a crisis line, it canbe a resource line, it can be
an anything line.
I tell you what the folks thatwork on our helpline team are
the real MVPs, because theyfilter through a lot of
(11:04):
different things throughout theday and are able to connect
these that I or.
In my opinion, the best thingabout a 24-hour helpline is that
it covers the full spectrum.
It could be one in theafternoon.
My doctor just retired.
I need a new gerontologist formy mom.
I don't know of any in the area.
(11:25):
You call them and they'llcollect lists from the area that
you can seek out and try tofind a new doctor.
But it could also be two in themorning and you're caring for
your spouse and they're outsideand they're behavioral,
belligerent, upset and you don'tknow how to deal with the
situation, calm the situationdown.
You call the helpline.
They get a master's levelcounselor on the phone, walk you
through best practices, tipsand tricks that can help calm
(11:47):
the situation so that it can beresolved and hopefully prevent,
say, like a 911 call, and thenanywhere in between.
It's also through our helplinethat you can access all of our
other programs and services.
You know our website is great.
There's a ton of resources andanswers there, but it's a lot.
I mean it's a lot especially ifyou're not someone who's very
tech savvy so you can call thatnumber and get connected with
the exact same resources thatare there, whether it's support
(12:10):
groups to care, consultation.
Speaker 2 (12:15):
I think that's so important, what you just said
about helping families, perhapsgive them suggestions of how to
word things, and I'm rephrasingwhat you said, but I think
that's really important.
We work with so many familiesand it is difficult, from
whether it's your dad or yourmom or your spouse, to accept
(12:37):
that this isn't just them beingstubborn or them being.
You know that we have baggage,we have family baggage.
Right, we all have this baggagekind of rears its head, when
really this is the disease thatis causing that belligerence by
(12:58):
the person with some form ofdementia.
But we often in the marketplaceand the field that we both
practice is we call it behaviors, and so too often it's easy to
come in with that baggage andsay, well, this is my dad being
grumpy or stubborn.
Well, okay, maybe, but there'sprobably more to it than that
(13:20):
and it probably is related tohow his brain works now and that
yelling at him or arguing withhim is probably the absolute
worst choice in trying toresolve that issue and the idea
that there's a helpline thatthey can call and say, okay,
this is what's happening.
I need to deescalate this.
(13:41):
How do I do that?
And what I hear you telling meis that the folks that are on
that helpline would have thatadvice about not trying to make
it where you're fighting withyour dad or you're fighting with
your spouse.
It is addressing the person andunderstanding the disease and
realizing that there aretechniques or communication
(14:04):
styles that are going to beeffective.
Because the reality is youcould try to convince your dad
that has dementia that they'rewrong, but even if somehow you
were successful in convincingthem they're wrong, they will
forget that by the next day.
So trying to prove your pointis pointless, because by the
next day they'll have forgottenanything they had agreed to or
(14:26):
anything that they had maybecome to some realization about,
and so it's so important toaddress these conversations in
the right way and try to leavethat baggage behind this is a
(14:56):
person that is sick and this issomeone that needs my help.
Speaker 1 (14:57):
role and accepting that very true bit about it's
not them being like this, it'stheir brain that is damaged,
telling them to be like this.
You know we wouldn't look atyou know someone with an outward
disability and say, well,there's nothing wrong with you.
You're choosing to be like that, but because we can't see it,
because it's internal within ourbrain.
We have a bigger challengetrying to identify that as a
(15:18):
disease and not a stubborn, youknow, father or whatever it
might be.
Speaker 2 (15:21):
One of the other topics we addressed at this
conference I was at last weekendwas on the stigma of dementia
and how unfortunate that is andit's, you know, both sides.
It's the family feeling,unfortunately, sometimes the
family feeling embarrassed andnot, and the problem with that
is then they might one of myother podcast guests called this
cocoon cocoon into the houseand not receive the help and
(15:45):
resources they could get fromAlzheimer's and other groups,
not have that social interactionwhich is so important to keep a
quality of life and just sortof hide that person in the house
and how damaging that can be.
On the other side of it is thesocietal stigma.
You know, I don't know how manytimes I've seen this where I'm
(16:07):
at a restaurant or something andbecause of the years of
experience I can observe and seethat someone has some form of
dementia and sometimes, you know, the general public is not very
accepting of that, you know andI, and so I think it can kind
of go on both sides of it thefamily being, you know, wanting
(16:28):
to not involve the person in theoutside world and then the
outside world not being veryfriendly when it comes to the
different aspects of someonewith dementia.
Speaker 1 (16:40):
That's very, very true, something that the
association does well.
We have a couple of things fromthe association side I'd like
to mention.
First, it's a reminder to anyof your caregivers out there is
that self-care is not selfish.
Take care of yourself, get outof the house when you can,
because you cannot pour from anempty glass.
We know that.
From the association side ofthings, we do have, of course,
(17:02):
education and support programsthat address that.
But we also have socialengagement programs.
One of the local ones forGenesee County, livingston
County area, is the Art Sparkprogram.
I'm not sure if you're familiarwith it.
It's through the fia.
It is put on specifically forindividuals with mild to
moderate cognitive impairmentand their care partners to come
and do gallery tours with theirtrained docents.
(17:25):
They we have an amazing partnerthere, jennifer, who trained
docents to be able to handlesituations with individuals with
dementia.
So they get gallery and thenthey also do art making.
So anywhere from clay to theprint art I believe it was last
month or maybe it's this comingmonth they're actually doing
they're making paperweights inthe hot shop.
Basically, the intention of thesocial engagement program is to
(17:48):
make sure that someone doesn'tget a diagnosis and then lock
themselves away.
It's not going to help you tolock yourself away, so to be
able to maintain that socialactivity, be with people who are
in similar situations.
And again, just like all of ourother programs, that's a free
program that we offer.
Beyond that, I'm focused quitehard and in Genesee County it's
going quite well at least oneducating maybe non-healthcare
(18:11):
professionals in this, becausewhen we think of the statistic
that one in three seniors willat some point in their life
develop some form of dementia,everybody is going to encounter
somebody with dementia at somepoint, whether it's at the
library, whether it's at themovie theater, whether it's at a
restaurant.
So we also provide education tothose settings as well, so that
people are more competent andconfident when they're
(18:33):
potentially faced with thatsituation in their workplace,
where they're not expecting it.
You know especially you knowI've had meetings with banks
because that's a concerning area, you know this all too well the
risk for financial exploitationand someone who has memory loss
.
Speaker 2 (18:47):
So being able to identify those signs and
symptoms and concerns and whatto do to address them in every
other industry- and what to doto address them in every other
(19:09):
industry, on any transaction,until they have time to
investigate further to make surethat it's not someone taking
advantage or elder abuse.
We have the funny story You'llremember Rachel from our office
that was she's not with us,she's not.
She's still with us, but she'snot with the office anymore.
But you'll remember Rachel andhow sweet and genuine she is.
(19:31):
And she went to the bank withone of our clients and had her
manner law tag on her on hershirt.
And you went to the bank withone of our clients and had her
mannered law tag on her shirtand the bank was very skeptical
of this young, pretty girlsitting next to this older man
saying we need to transfer thismoney into this new account,
which we were doing for legaland appropriate purposes.
But I was appreciative of thefact that they didn't just let
(19:54):
it happen without really makingan inquiry.
That's what banks should bedoing is saying okay, well, this
may be legitimate.
We're not going to just acceptit on its face.
We're going to make sure thatthere is.
You know that it's not justsomebody taking advantage of
someone.
And, as funny as it was becauseof you, know the situation that
(20:16):
we were in and the person thatwent to the bank with our client
, I felt it was very appropriatefor the bank to be cautious and
not immediately follow throughon the transaction that we were
trying to do, and I mean it's agood sign that people are
willing to step up and beobservant of those.
Speaker 1 (20:34):
As far I mean, it's a scary world.
People are willing to step upand be observant of those.
As far I mean, it's a scaryworld and I think we've all
heard too many scams and all theother things we can encounter,
so that there's folks out therewho are maybe not necessarily
expected to care or respondbased on those.
It's not family, it's notfriends, but they're still
willing to step up and keep aneye on things as a good
(20:54):
indicator for society.
Speaker 2 (20:55):
In my head, the other thing I wanted to comment on
that you mentioned a bit ago wasthe socialization that
Alzheimer's Association couldprovide with the FIA and
different things.
What I've learned through theyears is that often, with any
form well, certain, especiallycertain forms of dementia that
well, they might not be able toremember what they had for
(21:17):
breakfast or whether they tooktheir pill or not, or even
sometimes your name they oftenwill have the ability, any sort
of the artistic part of thebrain, the creative part of the
brain, still works, and that'sreally interesting.
We had an occupationaltherapist that we had come speak
to us a while back this wasmany years ago actually but she
(21:39):
would work with folks withdementia that also had physical
limitations and were a fall riskand rather than trying to put a
note or just constantly remindthe person to use their walker,
she would come up with a song tosing about.
When you get up, you use thewalker and I'm not going to even
(22:00):
attempt to sing the songbecause nobody wants that, but
it was a very sing-songy, one ofthose brain worms that will
just stick in your head becauseit was a very catchy tune,
sing-songy kind of a song thatshe made up words to of catchy
tune, sing-songy kind of a songthat she made up words to what
she found and this is anecdotal,obviously, but what she found
was when they would sing thissong, enough that it really was
(22:23):
helpful in getting someone toremember to use their walker or
to use their cane, or you know,and really improve the fall risk
so that there's less likelythey're going to fall, and
that's just very interesting.
She explained it about the youknow, the neural connections,
the brain waves in the differentparts of the brain and how that
(22:44):
there's certain parts of thebrain that are not affected by
it, and one of them is thecreative.
So music, art, you know thosetypes of things.
You'll see sometimes somebodythat has significant dementia
and they can sit down at thepiano and play beautifully, and
so I thought that was afascinating thing in that
sometimes those are the waysthat well, we can't you know, we
(23:08):
can't just berate somebody fornot using their walker.
There might be ways that we canremind them to use their walker
by using different parts oftheir.
We can remind them to use theirwalker by using different parts
of their brain than what we'reused to.
Speaker 1 (23:18):
Yeah, and that goes along with a lot of other
person-centered care planningfor folks.
You're going to take what theycan do and if it's singing and
if it's remembering songs likethat, you're going to use that
to be able to help the situation.
Make sure you play on thatstrength and make sure you allow
them that independence as muchas possible.
But yeah, it is interesting.
I mean anecdotally, in myexperience working in skilled
(23:41):
nursing I had a resident onceupon a time and I'm sure you're
very well familiar with thecognitive assessments that we do
and things like that.
And I could never get much of aresponse out of this individual,
but I did sing it poorly, ofcourse, because I'm not a
vocalist either.
She was able to sing the words.
She couldn't say the words, butshe could sing the words and I
(24:02):
always found that to beinteresting and I look forward
someday to having a true, trueunderstanding of how that really
works in the brain, becauseit's very interesting.
Speaker 2 (24:10):
That is very interesting, Douglas, tell us a
little bit more about theAlzheimer's Association and how
they can help families.
I know we'll address one ofthem is the support group.
So I know that Alzheimer'sAssociation all over the country
has support groups.
We have one that we host at ouroffice.
But tell us first more aboutthe support groups and then
we'll get into some of the otherservices that Alzheimer's
(24:31):
Association does Of course.
Speaker 1 (24:33):
So our support groups are well, they're all over the
place.
Like you say, you have one inyour office In Genesee County.
We have seven support groups.
Our support groups arevolunteer-ran, so we actively
recruit and train our volunteersso they're able to facilitate
support groups in a safe andconfidential environment.
The idea of going through acaregiving journey of somebody
(24:55):
with Alzheimer's or other formof dementia is daunting.
So to be able to have otherpeople experience that can share
their experiences and theirwisdom is important.
I know I've often said whenpeople, people always have
specific questions.
Nobody has a general questionbut it's some very specific.
I'm caring for my parent andthis very specific thing keeps
(25:19):
happening.
I wish that I had all of theanswers but I don't.
I don't.
But a lot of times they'll findthose answers in their support
groups because other people haveencountered those very specific
behaviors and how they'vetackled them themselves.
But also just being able to goto a place and knowing you're
not alone in what you're doingand you know you're never family
, you know you might never seeeach other again in a few years.
(25:40):
But to have that support systemof people who truly understand
what you're experiencing and youunderstand what they're
experiencing is pretty moving.
Our groups, of course, are free.
They range in times andlocations so that we could try
to accommodate anybody withdifferent working schedules.
So I mean there's a pretty goodchance that you can find one
(26:01):
either on our website or you cancall the helpline and they'll
connect you with one directly aswell.
Speaker 2 (26:05):
That's great, douglas , tell us a little bit more
about some of the other waysthat the Alzheimer's Association
can help families.
Speaker 1 (26:12):
So we also offer education programs.
We have a full curriculum it'sabout two pages of different
topics that we present on.
All of our topics are very muchdesigned for family caregivers
or I guess I should saynon-professional caregivers to
be able to understand andprocess.
The programs range anywherefrom 10 warning signs and
(26:35):
healthy habits for brain andbody.
We also have a five-part serieson how to be an empowered
caregiver and maintainindependence and communication
barriers and behavioral barriers, as well as programs that are
specific to some of our DDIoutreach, like LGBTQ and
HIV-related dementias andindividuals with intellectual
disabilities or developmentaldisabilities and dementia as
(26:57):
well.
So we have a slew of topics.
We do, of course, also offerprofessional training for people
, say, working in skillednursing or physicians.
Those aren't considered commonprograms so I don't deal with
them so much.
But all of our regulareducation programs very
digestible, very beneficial forfolks that have no idea what
they're doing, because you don'tlearn how to care for someone
(27:19):
with dementia until you have tocare for someone with dementia.
Speaker 2 (27:21):
Same thing with every other disease.
Speaker 1 (27:23):
Paralleling that thought, we also offer care
consultation, which is one of,in my opinion, one of our most
valuable programs.
Essentially, you call thehelpline, they set you up with
one of our care counselors Inthis area.
It's Miranda, a very well-knownsocial worker in this area.
She's a master's level socialworker.
She'll meet with the family, doa comprehensive assessment,
build a care plan and thenfollow along for six months so
(27:46):
to actually be able to guide afamily with, say, a fresh
diagnosis or a new behavioralchange through what we know
works, but then also connectingwith local resources and support
programs in the area so that afamily is set up for success to
the best of their ability.
Those are also offeredvirtually, like in our northern
part of Michigan, but here inGenesee County and the
surrounding areas it's offeredin person with Miranda or one of
(28:09):
our other care counselors,which is, I mean, an invaluable
resource for someone who isthrown into this journey.
By themselves.
It can be terrifying.
Speaker 2 (28:18):
I agree.
I think that's a tremendousresource because it is so
difficult to be able to filterdown all of the possible options
.
We have a chart that we'll handout to our clients that kind of
walks through the differencebetween home care and
independent living and assistedliving and memory care, all the
(28:41):
things along the way.
It is it all you know.
I would imagine to the averageperson who's just starting to
look into this it all kinds ofkind of blends together and that
it's really hard to distinguish.
You know we have some reallygreat independent livings that
would be completelyinappropriate for somebody that
has severe dementia and is awander risk, you know, and so
(29:04):
that would be, but they.
It's really hard for a lot offamilies to distinguish that
because you know they've heardabout how great this independent
living is but that under theright you know it might not be a
good fit for them.
So that service where you helpthe families really understand
what the needs are and what theoptions are, is just tremendous.
Speaker 1 (29:27):
And I feel too, it's nice to have a third party offer
that support.
I know I've spoken to our carecounselors many times and
stories that I hear about theymight even only be there once or
twice, but it's them and thetwo daughters that are at
different ends of theirunderstanding of the disease or
the spouse and the sibling, orthe spouse and the adult child
(29:50):
that are not on the same page asfar as what to expect, because
they're seeing it from twodifferent angles.
So a third party coming in to beable to kind of play advocate
for both sides and make surethat everybody's on the same
page in their journey, whetherit's looking for long-term care,
whether it's looking forresources to be able to stay out
of long-term care, to havesomebody who is 100% unbiased
(30:12):
and unwinded situation come inand offer just, you know,
empathy, but also resources andknowledge on the topic.
Speaker 2 (30:20):
I think that's so important to deal with the
family dynamic too.
I vividly recall a familymeeting I had with a client, and
the husband, the dad of thefamily, had expressed to me that
he was on his, he could not doit anymore.
The amount of need, on a minuteto minute basis, that he was
(30:41):
providing to his spouse was justexhausting him to the point of
illness, and he had reluctantlyexpressed that he did not feel
like he could do it anymore, atleast alone, whether his wife
was going to stay in the houseor get care outside of the house
.
That he could not do it and hadreached that point of pure,
(31:03):
pure exhaustion.
So he wasn't very confident inexpressing this to others.
I think there was a certainamount of sort of cultural guilt
and things like that.
And so we had the four kids Ibrought everybody in and anybody
that wanted to bring theirspouse could bring their spouse
(31:23):
sat around this big table andstarted talking about this, and
all of the kids were veryadamant that number one is dad
can do it, mom's not leaving thehouse and we're not bringing in
caregivers.
And I thought, oh, my goodness,you guys are in such denial
about the situation, and so Iturned to dad and I had him
(31:43):
express to his family, his kids,what he had expressed to me,
and they were in such denialthat they really had, they just
couldn't accept it at thatmeeting.
Now, it was a productivemeeting anyway, because not
everybody can, especially if youreally aren't aware, you didn't
really fully appreciate thesituation as it was.
Many people are not quick tomove off of what they believed
(32:08):
to be the answer, their answer.
And so well, it was not.
It seemed like a verydisappointing meeting that they
weren't listening to theirfather and how exhausted he was.
After over a week or two theystarted softening and realizing,
okay, this is, you know, partof it was raising the red flag
(32:30):
so that they would go and visittheir mom more often and kind of
see it, you know, face to face.
And after that they realized,okay, we can't put this burden.
You know, often the spouse isgoing to be of advanced age and
you know, the healthy spousemight be 80, 85, 75, whatever it
is, and we're expecting them toprovide 24-hour care, and often
(32:55):
it means 24-hour care, meaningthey're not getting sufficient
or good sleep at night.
And so I think, as difficult asthese conversations are for a
family.
It's a really good thing thatAlzheimer's Association helps to
move that conversation forward,because it is, you know, it's
(33:16):
difficult to imagine your mom oryour dad not being, you know,
not being that strong pillar ofa person that you grew up with
or that you know that they'renot capable of maybe sometimes
even getting to the bathroom orshowering or, you know,
sometimes eating, and so it'sreally important the service
(33:39):
that the Alzheimer's Associationoffers of being able to kind of
help with what are theappropriate care options, but
also part and parcel of that ishelping the family kind of wrap
their head around what's goingon.
Speaker 1 (33:54):
Yeah, and like I think I said it before, people
don't want to understand orthink about dementia and what it
looks like until theyabsolutely have to.
I always like to make a joke.
Whenever I'm at, say, a seniorresource fair or any kind of
tabling or public event, I swearpeople.
Look at my big purpletablecloth that says Alzheimer's
Association and I've never seenpeople run that senior health
(34:17):
fair.
Because, nobody wants to thinkabout it.
It's a scary topic.
We don't want to plan for it,but at the end of the day it's
only going to hurt us if weignore it and we don't think
about it and the stigma behindit from a societal standpoint in
my experience, it seems likeit's lessening, which is nice
Could it be better I mean to beable to be put in a position
(34:38):
where you know what's comingnext, whether it's good or it's
bad.
To be able to then take that andsay visit you or other
individuals that might be ableto help plan for the future.
Take that and say visit you orother individuals that might be
able to help plan for the future.
It's worth skipping over thefear and jumping to the well.
Maybe we should keep this inmind because otherwise you end
up in a situation where, likeyou say, families don't
understand what's going on, orhalf the family does and half
(35:01):
the family don't.
So to keep on tackling thatstigma and make sure that people
are aware that it's not likeit's a contagious disease.
It's not something that can beavoided either.
It's anybody with a brain is atrisk, right.
So getting people to understandthat and then working towards a
future that has the programsand services support the
(35:21):
understanding there, and thenthe family support, whatever it
might be, to come along with it.
Speaker 2 (35:26):
Well, I wore my purple tie because I knew I was
going to be talking to you today.
So one of the ways I know thatfolks will interact with or have
an opportunity to interact withAlzheimer's Association is the
annual walk.
So I know it's in this area.
It's typically, I thinkprobably across the country,
it's typically done in the falltime period, right?
So can I know that ourlisteners maybe have
(35:47):
participated in the walk, atleast you've heard of it, but
tell us a little bit more aboutthe Alzheimer's walk.
Speaker 1 (35:53):
So I tell you what it's.
My favorite thing it's not eventechnically my job.
But I will still help them nomatter what.
Because, to see, first andforemost, third weekend in
October I believe it's October19th this year will be the Flint
Walk to Alzheimer's.
It'll be downtown Flint on theflat lot, but in Michigan
there's 22 walks, so it's nothard to find one.
(36:14):
And then across the countrythere's 600 and some.
Speaker 2 (36:17):
There's opportunities .
Speaker 1 (36:19):
I will say that I've said it multiple times that all
of our programs are free oureducation, our support service,
our Wanderer, scholarships, care, consultation and it's because
of this, realistically, we haveplenty of fundraisers throughout
the year, as far as the longestday.
People have heard of differentlarger scale events, but Walk to
End Alzheimer's is the largestfundraising effort that we have.
(36:41):
That allows us to continuedoing what we're doing.
I think in 2023, across thecountry raised over $100 million
.
Wow, that went into programsand support went into research,
allows us to continue being thelargest private funder of
dementia resources or researchin the world because of this
event and it's fun, it'senjoyable.
(37:02):
Well, you know, you've been.
Speaker 2 (37:04):
Yeah, it is fun.
It is very fun.
Bring the kids there'sactivities.
You know you've been.
Yeah, it is fun.
It is very fun.
Bring the kids there'sactivities.
Speaker 1 (37:09):
You know there's tables that people are giving
away free stuff bubbles andbananas and whatever so it is a
fun day yes, and then, of course, I'll be there with my purple
tent to go, with my purple shirtand purple tablecloth, I'm with
programs and services andsupport, and it all culminates
in the promise garden ceremony,which is one of the more moving
things you'll experience, aspeople share their stories as to
(37:30):
why they're there and whythey'll continue to be there
until we don't have to be thereanymore.
But it's an event.
I mean the event's free toregister, free to attend.
We just hope that peoplefundraise a little bit along the
way.
Speaker 2 (37:40):
So, douglas Lobdell from the Alzheimer's Association
, thank you for coming on.
This has been very educationaland I really appreciate the
information and the work thatyou do.
Speaker 1 (37:50):
Thank you for having me.
It's nice to see you again,even if it's virtually.
Speaker 2 (37:54):
Right.
So if you enjoyed this episode,don't forget to subscribe.
You can find us on anywherethat you can find podcasts under
the title Advice from yourAdvocates.
If you'd like to see oursmiling faces, you can find that
on YouTube, because our well,most of you might be just here
to listen to the podcast.
Some might want to see thevideo, and that is on YouTube.
(38:15):
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manorlawgroupcom.
So thanks for joining us anddon't forget to subscribe.
You're listening to Advice from your Advocates, a
show where we provide elder lawadvice to professionals who work
with the elderly and theirfamilies.
Speaker 2 (00:10):
Welcome back to Advice from your Advocates.
I'm Bob Manor.
I'm a board-certified elder lawattorney here in Michigan and
I'm really excited about ourguest today.
So we have Douglas Lobdell fromthe Alzheimer's Association.
So we have Douglas Lobdell fromthe Alzheimer's Association.
Douglas has been a friend ofManor Law Group for I don't know
at least 10 years and he's avery passionate advocate for
(00:34):
those families that are dealingwith someone with dementia.
I'm really excited to haveDouglas here.
Welcome, doug.
Speaker 1 (00:45):
Can you just give us an idea of who you are and what
you do at the Alzheimer'sAssociation.
So my title with theAlzheimer's Association is
program manager, which doesn'treally clarify anything.
What that looks like in realityis recruiting, managing
volunteers, making sure thatsupport groups are happening and
available in different areas,as well as education programs.
But a large part of my rolealso includes making sure that
(01:05):
people know we're here and whatwe can do for folks that need us
in sometimes their darkesttimes, when they're dealing with
this disease and others.
Speaker 2 (01:13):
Absolutely, and you know, you and I have talked
about this frequently, about howso many people don't have an
understanding of all of theoptions and services that the
Alzheimer's Association offers,which is, you know, it's some
really important services andhelp.
Before we get into thespecifics of that, I want to ask
(01:37):
this very important question Doyou have to have Alzheimer's to
benefit from these programs, ordoes it cover all forms of
dementia?
Speaker 1 (01:45):
No, the answer is all forms of dementia.
If you were to look at my W-2,since everybody just got theirs
in the mail the organization Iwork for is actually the
Alzheimer's disease and allother related dementias, but
that's not quite as catchy on aflyer.
So the Alzheimer's Associationrolls off the tongue a little
bit easier.
Plus, it is the most commontype of dementia that we find.
Speaker 2 (02:07):
Yeah.
Speaker 1 (02:08):
But yes, any form of dementia or even just mild
cognitive impairment issues,they can provide some help.
Speaker 2 (02:14):
So I want to put an emphasis on that, about how the
Alzheimer's Association is allforms of dementia and I think
some of our listeners stillmight be have a little confusion
about that that dementia is adisease in and of itself.
And the reality is dementia isa category of diseases.
(02:35):
Right, it's so.
It's like saying somebody hascancer, okay.
We always ask then, what typeof cancer?
Unfortunately and I, you know,my staff and I, my team and I
have been we're talking aboutthis just last week I do feel
like there's a bit of ageismwhen it comes to the medical
staff and dementia is oftenwe'll get this diagnosis of
(02:55):
generalized dementia and thatthere's not any further analysis
of.
Okay, is it vascular, is itAlzheimer's, is it frontal,
temporal, is it Lewy body, youknow, and those things, the
diagnosis.
Certainly, if we had cancer, wewould want a very clear
diagnosis of what that is andwhat symptoms we're going to
(03:16):
have.
And unfortunately, sometimeswith dementia it is not.
It is just saying, okay, well,this person has generalized
dementia, okay, let's dig alittle deeper and figure out
what type of that is.
Just saying, okay, well, thisperson has generalized dementia,
okay, let's dig a little deeperand figure out what type of
that is?
Now, I know that the point thatyou're making is it doesn't
matter Alzheimer's Associationand related dementias are here
for everyone.
But I do like to make thatpoint that I'm always
(03:38):
recommending to families thatthey try to dig deeper and say,
okay, but what type?
Speaker 1 (03:42):
of dementia.
Do you think this is A showwhere we provide elder law
advice to professionals who workwith the elderly and their
families?
For a very long time and you'vebeen around long enough to see
this as well that F30unspecified dementia with
behavioral disturbance diagnosiswas all too common, right that?
was you got, send you home goodluck.
But where we are as far asresearch and treatment goes, the
(04:09):
importance of an accuratediagnosis is probably never been
more critical, because thetreatments that are coming out
for Alzheimer's disease will nothelp you if you have Lewy
body's dementia or vascular.
Similarly, we're going to treatvascular and Lewy body dementia
differently, not just onsymptom you know, symptom
management but as well asmedications that we administer
and things like that.
And you made the perfectanalogy there.
You wouldn't just accept theanswer I have cancer and call it
(04:31):
good because we treat everykind of cancer different, just
like we need to treat every kindof dementia different.
So you'll see, probably overthe next few years, a little bit
of an increase.
I don't want to use the wordmarketing campaign, but that's
the word that comes to mind fromthe association about the
importance of not just acceptingthat diagnosis and getting more
questions answered from yourdoctor so that your next steps
(04:51):
aren't steps into the dark.
Speaker 2 (04:53):
That's great.
I'm really glad to hear thatbecause I think that's so
important.
Let's get into some of thefirst of all, I know your
background.
If you want to give us a littlebit more about your background,
you've worked in all stages, Ithink, or many stages of helping
families deal with long-termcare issues and you've been a
(05:15):
passionate advocate all the wayalong.
You know you and I's firstinteraction was you volunteering
for the Alzheimer's Associationand not getting paid for it,
and it just shows how you knowthat this is an issue for you
that you're passionate about andI'm really glad that you're in
your current role.
(05:36):
But tell us a little bit aboutyour background.
Speaker 1 (05:38):
So I, by degree and licensure, I'm a social worker,
graduated in 2012.
And since then I haveexclusively worked in senior
health care of some sort,whether it's in skilled nursing
facilities, assisted living,memory care settings, and then,
inevitably, with the association.
That's the only thing that Iknow how to do.
Reality and um and like yousaid, we met the first time.
(05:59):
Well, doing math, it's a bignumber.
Now I want to say it's close to15 years ago, probably yeah, I
started volunteering with theAssociation for the Walk
Planning side, and I volunteeredstraight for 14 years before a
position became available that Iwas like it's time that I take
this jump and actually work forthem.
So it's definitely somethingthat I know, I love, I'm
(06:24):
passionate about, and I alsowant to see improvement and
change in as far as making surepeople aren't forgotten, because
we all know dementia isn't anormal part of aging.
It's a disease and it'ssomething that needs to be faced
, not ignored.
Speaker 2 (06:39):
So if we can get over that stigma, even better.
I was at a national conferencethis weekend, this past weekend,
that deals with long-term careand dementia and how lawyers can
help with that, and so one ofthe conversations that came up
is a sad conversation but it's atrue conversation and I think
we're all exposed to socialmedia.
(07:02):
We have TikTok running on,flipping, know, flipping through
the TikTok, flipping throughwhatever Facebook, whatever is
your preferred social media.
But every month it seems thereis some kind of hype about some
new drug or some new treatment.
And the conversation we werehaving at this conference was
it's not, we're not going to.
I mean, obviously Alzheimer'sAssociation talks about you know
(07:22):
that we're trying to find acure.
Not, we're not going to.
I mean, obviously Alzheimer'sAssociation talks about you know
that we're trying to find acure, but that's not going to
happen tomorrow.
And so the false hope I thinkthat sometimes comes out when
there's all this hype about thisdrug or that drug or whatever
it is, and of course we'realways working towards that.
But the sad reality is, forthose that are currently
(07:44):
experiencing dementia, they'renot probably going to benefit
from whatever medical advancesthat we have in 10, 20, 100
years and that we have to berealistic about the idea that if
we have a form of dementia,it's probably with the exception
of those short-term likedelirium it's probably only
(08:04):
going to get worse, that when wesee this stuff on social media
or elsewhere.
It isn't likely to provide acure in six months, right.
Speaker 1 (08:14):
So a ton has happened in research lately.
If I had two, three hours ofyour time we could go over a lot
of that stuff, but I don't.
I will say, with the currentmedication treatments that are
coming out within the lastcouple of years, lekembe and
then Denonimab are the two mainones that are showing an actual
impact on the biology of thedisease.
You know, for years themedications have treated
(08:36):
symptoms Thinking back to 1996,when the very first ones came
out.
That's all symptom management.
At the end of the day itdoesn't actually affect the
amyloid plaques and tau tanglesthat are damaging the brain.
These new medications are,which is awesome because it's,
you know, something to beoptimistic about those
medications.
They'll have to be administeredearly in the disease process
(08:56):
and they based on research.
You know we're two, three yearsinto some of these medications.
There's not a ton of informationon longer term effects of it
but delaying symptoms up to sixto eight months, which for a
family and you know this,someone with a fresh diagnosis
six to eight months is alifetime.
From a researcher standpointthey might not see that as
relevant.
(09:17):
But for a family to be able tohave that extra six months or
more to plan for the future, tojust enjoy life in the present
before symptoms continue toprogress.
That can make or break a person.
But you're correct, becausesomeone right now in a late
stage of dementia, isn'teligible for that medication and
realistically, on a medicationthat is focused on that
(09:38):
pathology.
You know, clearing the plaquesand tangles if the damage is
already done in the brain.
We can't regrow the brain, notyet at least.
So those folks are still goingto benefit from the Alzheimer's
Association, but they're goingto benefit from the programs and
services side, which is thesupport and education and beyond
.
Speaker 2 (09:54):
Well, that's a great segue into what I want to make
sure that we have an opportunityto talk about, which is all of
the services that theAlzheimer's Association provides
.
Let's start with one and thenwe'll go into a lot of the
others.
But the hotline that you guyshave, I think, is really great,
(10:14):
because when we have a caregiverspouse or a caregiver child, it
can be really overwhelming andthe idea that I believe and you
can correct me, douglas, if I'mwrong this is a 24-hour hotline
that they can call and talk tosomebody that understands, you
know, that understands howdifficult and how challenging it
(10:35):
is to care for a loved one withdementia.
So tell us a little bit more,if you will, about that, I
believe.
24-hour hotline.
Speaker 1 (10:43):
Yeah, so our 24-hour helpline, 800-272-3900.
It's a number worth rememberingand it's exactly that 24 hours
a day, seven days a week.
It can be a crisis line, it canbe a resource line, it can be
an anything line.
I tell you what the folks thatwork on our helpline team are
the real MVPs, because theyfilter through a lot of
(11:04):
different things throughout theday and are able to connect
these that I or.
In my opinion, the best thingabout a 24-hour helpline is that
it covers the full spectrum.
It could be one in theafternoon.
My doctor just retired.
I need a new gerontologist formy mom.
I don't know of any in the area.
(11:25):
You call them and they'llcollect lists from the area that
you can seek out and try tofind a new doctor.
But it could also be two in themorning and you're caring for
your spouse and they're outsideand they're behavioral,
belligerent, upset and you don'tknow how to deal with the
situation, calm the situationdown.
You call the helpline.
They get a master's levelcounselor on the phone, walk you
through best practices, tipsand tricks that can help calm
(11:47):
the situation so that it can beresolved and hopefully prevent,
say, like a 911 call, and thenanywhere in between.
It's also through our helplinethat you can access all of our
other programs and services.
You know our website is great.
There's a ton of resources andanswers there, but it's a lot.
I mean it's a lot especially ifyou're not someone who's very
tech savvy so you can call thatnumber and get connected with
the exact same resources thatare there, whether it's support
(12:10):
groups to care, consultation.
Speaker 2 (12:15):
I think that's so important, what you just said
about helping families, perhapsgive them suggestions of how to
word things, and I'm rephrasingwhat you said, but I think
that's really important.
We work with so many familiesand it is difficult, from
whether it's your dad or yourmom or your spouse, to accept
(12:37):
that this isn't just them beingstubborn or them being.
You know that we have baggage,we have family baggage.
Right, we all have this baggagekind of rears its head, when
really this is the disease thatis causing that belligerence by
(12:58):
the person with some form ofdementia.
But we often in the marketplaceand the field that we both
practice is we call it behaviors, and so too often it's easy to
come in with that baggage andsay, well, this is my dad being
grumpy or stubborn.
Well, okay, maybe, but there'sprobably more to it than that
(13:20):
and it probably is related tohow his brain works now and that
yelling at him or arguing withhim is probably the absolute
worst choice in trying toresolve that issue and the idea
that there's a helpline thatthey can call and say, okay,
this is what's happening.
I need to deescalate this.
(13:41):
How do I do that?
And what I hear you telling meis that the folks that are on
that helpline would have thatadvice about not trying to make
it where you're fighting withyour dad or you're fighting with
your spouse.
It is addressing the person andunderstanding the disease and
realizing that there aretechniques or communication
(14:04):
styles that are going to beeffective.
Because the reality is youcould try to convince your dad
that has dementia that they'rewrong, but even if somehow you
were successful in convincingthem they're wrong, they will
forget that by the next day.
So trying to prove your pointis pointless, because by the
next day they'll have forgottenanything they had agreed to or
(14:26):
anything that they had maybecome to some realization about,
and so it's so important toaddress these conversations in
the right way and try to leavethat baggage behind this is a
(14:56):
person that is sick and this issomeone that needs my help.
Speaker 1 (14:57):
role and accepting that very true bit about it's
not them being like this, it'stheir brain that is damaged,
telling them to be like this.
You know we wouldn't look atyou know someone with an outward
disability and say, well,there's nothing wrong with you.
You're choosing to be like that, but because we can't see it,
because it's internal within ourbrain.
We have a bigger challengetrying to identify that as a
(15:18):
disease and not a stubborn, youknow, father or whatever it
might be.
Speaker 2 (15:21):
One of the other topics we addressed at this
conference I was at last weekendwas on the stigma of dementia
and how unfortunate that is andit's, you know, both sides.
It's the family feeling,unfortunately, sometimes the
family feeling embarrassed andnot, and the problem with that
is then they might one of myother podcast guests called this
cocoon cocoon into the houseand not receive the help and
(15:45):
resources they could get fromAlzheimer's and other groups,
not have that social interactionwhich is so important to keep a
quality of life and just sortof hide that person in the house
and how damaging that can be.
On the other side of it is thesocietal stigma.
You know, I don't know how manytimes I've seen this where I'm
(16:07):
at a restaurant or something andbecause of the years of
experience I can observe and seethat someone has some form of
dementia and sometimes, you know, the general public is not very
accepting of that, you know andI, and so I think it can kind
of go on both sides of it thefamily being, you know, wanting
(16:28):
to not involve the person in theoutside world and then the
outside world not being veryfriendly when it comes to the
different aspects of someonewith dementia.
Speaker 1 (16:40):
That's very, very true, something that the
association does well.
We have a couple of things fromthe association side I'd like
to mention.
First, it's a reminder to anyof your caregivers out there is
that self-care is not selfish.
Take care of yourself, get outof the house when you can,
because you cannot pour from anempty glass.
We know that.
From the association side ofthings, we do have, of course,
(17:02):
education and support programsthat address that.
But we also have socialengagement programs.
One of the local ones forGenesee County, livingston
County area, is the Art Sparkprogram.
I'm not sure if you're familiarwith it.
It's through the fia.
It is put on specifically forindividuals with mild to
moderate cognitive impairmentand their care partners to come
and do gallery tours with theirtrained docents.
(17:25):
They we have an amazing partnerthere, jennifer, who trained
docents to be able to handlesituations with individuals with
dementia.
So they get gallery and thenthey also do art making.
So anywhere from clay to theprint art I believe it was last
month or maybe it's this comingmonth they're actually doing
they're making paperweights inthe hot shop.
Basically, the intention of thesocial engagement program is to
(17:48):
make sure that someone doesn'tget a diagnosis and then lock
themselves away.
It's not going to help you tolock yourself away, so to be
able to maintain that socialactivity, be with people who are
in similar situations.
And again, just like all of ourother programs, that's a free
program that we offer.
Beyond that, I'm focused quitehard and in Genesee County it's
going quite well at least oneducating maybe non-healthcare
(18:11):
professionals in this, becausewhen we think of the statistic
that one in three seniors willat some point in their life
develop some form of dementia,everybody is going to encounter
somebody with dementia at somepoint, whether it's at the
library, whether it's at themovie theater, whether it's at a
restaurant.
So we also provide education tothose settings as well, so that
people are more competent andconfident when they're
(18:33):
potentially faced with thatsituation in their workplace,
where they're not expecting it.
You know especially you knowI've had meetings with banks
because that's a concerning area, you know this all too well the
risk for financial exploitationand someone who has memory loss
.
Speaker 2 (18:47):
So being able to identify those signs and
symptoms and concerns and whatto do to address them in every
other industry- and what to doto address them in every other
(19:09):
industry, on any transaction,until they have time to
investigate further to make surethat it's not someone taking
advantage or elder abuse.
We have the funny story You'llremember Rachel from our office
that was she's not with us,she's not.
She's still with us, but she'snot with the office anymore.
But you'll remember Rachel andhow sweet and genuine she is.
(19:31):
And she went to the bank withone of our clients and had her
manner law tag on her on hershirt.
And you went to the bank withone of our clients and had her
mannered law tag on her shirtand the bank was very skeptical
of this young, pretty girlsitting next to this older man
saying we need to transfer thismoney into this new account,
which we were doing for legaland appropriate purposes.
But I was appreciative of thefact that they didn't just let
(19:54):
it happen without really makingan inquiry.
That's what banks should bedoing is saying okay, well, this
may be legitimate.
We're not going to just acceptit on its face.
We're going to make sure thatthere is.
You know that it's not justsomebody taking advantage of
someone.
And, as funny as it was becauseof you, know the situation that
(20:16):
we were in and the person thatwent to the bank with our client
, I felt it was very appropriatefor the bank to be cautious and
not immediately follow throughon the transaction that we were
trying to do, and I mean it's agood sign that people are
willing to step up and beobservant of those.
Speaker 1 (20:34):
As far I mean, it's a scary world.
People are willing to step upand be observant of those.
As far I mean, it's a scaryworld and I think we've all
heard too many scams and all theother things we can encounter,
so that there's folks out therewho are maybe not necessarily
expected to care or respondbased on those.
It's not family, it's notfriends, but they're still
willing to step up and keep aneye on things as a good
(20:54):
indicator for society.
Speaker 2 (20:55):
In my head, the other thing I wanted to comment on
that you mentioned a bit ago wasthe socialization that
Alzheimer's Association couldprovide with the FIA and
different things.
What I've learned through theyears is that often, with any
form well, certain, especiallycertain forms of dementia that
well, they might not be able toremember what they had for
(21:17):
breakfast or whether they tooktheir pill or not, or even
sometimes your name they oftenwill have the ability, any sort
of the artistic part of thebrain, the creative part of the
brain, still works, and that'sreally interesting.
We had an occupationaltherapist that we had come speak
to us a while back this wasmany years ago actually but she
(21:39):
would work with folks withdementia that also had physical
limitations and were a fall riskand rather than trying to put a
note or just constantly remindthe person to use their walker,
she would come up with a song tosing about.
When you get up, you use thewalker and I'm not going to even
(22:00):
attempt to sing the songbecause nobody wants that, but
it was a very sing-songy, one ofthose brain worms that will
just stick in your head becauseit was a very catchy tune,
sing-songy kind of a song thatshe made up words to of catchy
tune, sing-songy kind of a songthat she made up words to what
she found and this is anecdotal,obviously, but what she found
was when they would sing thissong, enough that it really was
(22:23):
helpful in getting someone toremember to use their walker or
to use their cane, or you know,and really improve the fall risk
so that there's less likelythey're going to fall, and
that's just very interesting.
She explained it about the youknow, the neural connections,
the brain waves in the differentparts of the brain and how that
(22:44):
there's certain parts of thebrain that are not affected by
it, and one of them is thecreative.
So music, art, you know thosetypes of things.
You'll see sometimes somebodythat has significant dementia
and they can sit down at thepiano and play beautifully, and
so I thought that was afascinating thing in that
sometimes those are the waysthat well, we can't you know, we
(23:08):
can't just berate somebody fornot using their walker.
There might be ways that we canremind them to use their walker
by using different parts oftheir.
We can remind them to use theirwalker by using different parts
of their brain than what we'reused to.
Speaker 1 (23:18):
Yeah, and that goes along with a lot of other
person-centered care planningfor folks.
You're going to take what theycan do and if it's singing and
if it's remembering songs likethat, you're going to use that
to be able to help the situation.
Make sure you play on thatstrength and make sure you allow
them that independence as muchas possible.
But yeah, it is interesting.
I mean anecdotally, in myexperience working in skilled
(23:41):
nursing I had a resident onceupon a time and I'm sure you're
very well familiar with thecognitive assessments that we do
and things like that.
And I could never get much of aresponse out of this individual,
but I did sing it poorly, ofcourse, because I'm not a
vocalist either.
She was able to sing the words.
She couldn't say the words, butshe could sing the words and I
(24:02):
always found that to beinteresting and I look forward
someday to having a true, trueunderstanding of how that really
works in the brain, becauseit's very interesting.
Speaker 2 (24:10):
That is very interesting, Douglas, tell us a
little bit more about theAlzheimer's Association and how
they can help families.
I know we'll address one ofthem is the support group.
So I know that Alzheimer'sAssociation all over the country
has support groups.
We have one that we host at ouroffice.
But tell us first more aboutthe support groups and then
we'll get into some of the otherservices that Alzheimer's
(24:31):
Association does Of course.
Speaker 1 (24:33):
So our support groups are well, they're all over the
place.
Like you say, you have one inyour office In Genesee County.
We have seven support groups.
Our support groups arevolunteer-ran, so we actively
recruit and train our volunteersso they're able to facilitate
support groups in a safe andconfidential environment.
The idea of going through acaregiving journey of somebody
(24:55):
with Alzheimer's or other formof dementia is daunting.
So to be able to have otherpeople experience that can share
their experiences and theirwisdom is important.
I know I've often said whenpeople, people always have
specific questions.
Nobody has a general questionbut it's some very specific.
I'm caring for my parent andthis very specific thing keeps
(25:19):
happening.
I wish that I had all of theanswers but I don't.
I don't.
But a lot of times they'll findthose answers in their support
groups because other people haveencountered those very specific
behaviors and how they'vetackled them themselves.
But also just being able to goto a place and knowing you're
not alone in what you're doingand you know you're never family
, you know you might never seeeach other again in a few years.
(25:40):
But to have that support systemof people who truly understand
what you're experiencing and youunderstand what they're
experiencing is pretty moving.
Our groups, of course, are free.
They range in times andlocations so that we could try
to accommodate anybody withdifferent working schedules.
So I mean there's a pretty goodchance that you can find one
(26:01):
either on our website or you cancall the helpline and they'll
connect you with one directly aswell.
Speaker 2 (26:05):
That's great, douglas , tell us a little bit more
about some of the other waysthat the Alzheimer's Association
can help families.
Speaker 1 (26:12):
So we also offer education programs.
We have a full curriculum it'sabout two pages of different
topics that we present on.
All of our topics are very muchdesigned for family caregivers
or I guess I should saynon-professional caregivers to
be able to understand andprocess.
The programs range anywherefrom 10 warning signs and
(26:35):
healthy habits for brain andbody.
We also have a five-part serieson how to be an empowered
caregiver and maintainindependence and communication
barriers and behavioral barriers, as well as programs that are
specific to some of our DDIoutreach, like LGBTQ and
HIV-related dementias andindividuals with intellectual
disabilities or developmentaldisabilities and dementia as
(26:57):
well.
So we have a slew of topics.
We do, of course, also offerprofessional training for people
, say, working in skillednursing or physicians.
Those aren't considered commonprograms so I don't deal with
them so much.
But all of our regulareducation programs very
digestible, very beneficial forfolks that have no idea what
they're doing, because you don'tlearn how to care for someone
(27:19):
with dementia until you have tocare for someone with dementia.
Speaker 2 (27:21):
Same thing with every other disease.
Speaker 1 (27:23):
Paralleling that thought, we also offer care
consultation, which is one of,in my opinion, one of our most
valuable programs.
Essentially, you call thehelpline, they set you up with
one of our care counselors Inthis area.
It's Miranda, a very well-knownsocial worker in this area.
She's a master's level socialworker.
She'll meet with the family, doa comprehensive assessment,
build a care plan and thenfollow along for six months so
(27:46):
to actually be able to guide afamily with, say, a fresh
diagnosis or a new behavioralchange through what we know
works, but then also connectingwith local resources and support
programs in the area so that afamily is set up for success to
the best of their ability.
Those are also offeredvirtually, like in our northern
part of Michigan, but here inGenesee County and the
surrounding areas it's offeredin person with Miranda or one of
(28:09):
our other care counselors,which is, I mean, an invaluable
resource for someone who isthrown into this journey.
By themselves.
It can be terrifying.
Speaker 2 (28:18):
I agree.
I think that's a tremendousresource because it is so
difficult to be able to filterdown all of the possible options
.
We have a chart that we'll handout to our clients that kind of
walks through the differencebetween home care and
independent living and assistedliving and memory care, all the
(28:41):
things along the way.
It is it all you know.
I would imagine to the averageperson who's just starting to
look into this it all kinds ofkind of blends together and that
it's really hard to distinguish.
You know we have some reallygreat independent livings that
would be completelyinappropriate for somebody that
has severe dementia and is awander risk, you know, and so
(29:04):
that would be, but they.
It's really hard for a lot offamilies to distinguish that
because you know they've heardabout how great this independent
living is but that under theright you know it might not be a
good fit for them.
So that service where you helpthe families really understand
what the needs are and what theoptions are, is just tremendous.
Speaker 1 (29:27):
And I feel too, it's nice to have a third party offer
that support.
I know I've spoken to our carecounselors many times and
stories that I hear about theymight even only be there once or
twice, but it's them and thetwo daughters that are at
different ends of theirunderstanding of the disease or
the spouse and the sibling, orthe spouse and the adult child
(29:50):
that are not on the same page asfar as what to expect, because
they're seeing it from twodifferent angles.
So a third party coming in to beable to kind of play advocate
for both sides and make surethat everybody's on the same
page in their journey, whetherit's looking for long-term care,
whether it's looking forresources to be able to stay out
of long-term care, to havesomebody who is 100% unbiased
(30:12):
and unwinded situation come inand offer just, you know,
empathy, but also resources andknowledge on the topic.
Speaker 2 (30:20):
I think that's so important to deal with the
family dynamic too.
I vividly recall a familymeeting I had with a client, and
the husband, the dad of thefamily, had expressed to me that
he was on his, he could not doit anymore.
The amount of need, on a minuteto minute basis, that he was
(30:41):
providing to his spouse was justexhausting him to the point of
illness, and he had reluctantlyexpressed that he did not feel
like he could do it anymore, atleast alone, whether his wife
was going to stay in the houseor get care outside of the house
.
That he could not do it and hadreached that point of pure,
(31:03):
pure exhaustion.
So he wasn't very confident inexpressing this to others.
I think there was a certainamount of sort of cultural guilt
and things like that.
And so we had the four kids Ibrought everybody in and anybody
that wanted to bring theirspouse could bring their spouse
(31:23):
sat around this big table andstarted talking about this, and
all of the kids were veryadamant that number one is dad
can do it, mom's not leaving thehouse and we're not bringing in
caregivers.
And I thought, oh, my goodness,you guys are in such denial
about the situation, and so Iturned to dad and I had him
(31:43):
express to his family, his kids,what he had expressed to me,
and they were in such denialthat they really had, they just
couldn't accept it at thatmeeting.
Now, it was a productivemeeting anyway, because not
everybody can, especially if youreally aren't aware, you didn't
really fully appreciate thesituation as it was.
Many people are not quick tomove off of what they believed
(32:08):
to be the answer, their answer.
And so well, it was not.
It seemed like a verydisappointing meeting that they
weren't listening to theirfather and how exhausted he was.
After over a week or two theystarted softening and realizing,
okay, this is, you know, partof it was raising the red flag
(32:30):
so that they would go and visittheir mom more often and kind of
see it, you know, face to face.
And after that they realized,okay, we can't put this burden.
You know, often the spouse isgoing to be of advanced age and
you know, the healthy spousemight be 80, 85, 75, whatever it
is, and we're expecting them toprovide 24-hour care, and often
(32:55):
it means 24-hour care, meaningthey're not getting sufficient
or good sleep at night.
And so I think, as difficult asthese conversations are for a
family.
It's a really good thing thatAlzheimer's Association helps to
move that conversation forward,because it is, you know, it's
(33:16):
difficult to imagine your mom oryour dad not being, you know,
not being that strong pillar ofa person that you grew up with
or that you know that they'renot capable of maybe sometimes
even getting to the bathroom orshowering or, you know,
sometimes eating, and so it'sreally important the service
(33:39):
that the Alzheimer's Associationoffers of being able to kind of
help with what are theappropriate care options, but
also part and parcel of that ishelping the family kind of wrap
their head around what's goingon.
Speaker 1 (33:54):
Yeah, and like I think I said it before, people
don't want to understand orthink about dementia and what it
looks like until theyabsolutely have to.
I always like to make a joke.
Whenever I'm at, say, a seniorresource fair or any kind of
tabling or public event, I swearpeople.
Look at my big purpletablecloth that says Alzheimer's
Association and I've never seenpeople run that senior health
(34:17):
fair.
Because, nobody wants to thinkabout it.
It's a scary topic.
We don't want to plan for it,but at the end of the day it's
only going to hurt us if weignore it and we don't think
about it and the stigma behindit from a societal standpoint in
my experience, it seems likeit's lessening, which is nice
Could it be better I mean to beable to be put in a position
(34:38):
where you know what's comingnext, whether it's good or it's
bad.
To be able to then take that andsay visit you or other
individuals that might be ableto help plan for the future.
Take that and say visit you orother individuals that might be
able to help plan for the future.
It's worth skipping over thefear and jumping to the well.
Maybe we should keep this inmind because otherwise you end
up in a situation where, likeyou say, families don't
understand what's going on, orhalf the family does and half
(35:01):
the family don't.
So to keep on tackling thatstigma and make sure that people
are aware that it's not likeit's a contagious disease.
It's not something that can beavoided either.
It's anybody with a brain is atrisk, right.
So getting people to understandthat and then working towards a
future that has the programsand services support the
(35:21):
understanding there, and thenthe family support, whatever it
might be, to come along with it.
Speaker 2 (35:26):
Well, I wore my purple tie because I knew I was
going to be talking to you today.
So one of the ways I know thatfolks will interact with or have
an opportunity to interact withAlzheimer's Association is the
annual walk.
So I know it's in this area.
It's typically, I thinkprobably across the country,
it's typically done in the falltime period, right?
So can I know that ourlisteners maybe have
(35:47):
participated in the walk, atleast you've heard of it, but
tell us a little bit more aboutthe Alzheimer's walk.
Speaker 1 (35:53):
So I tell you what it's.
My favorite thing it's not eventechnically my job.
But I will still help them nomatter what.
Because, to see, first andforemost, third weekend in
October I believe it's October19th this year will be the Flint
Walk to Alzheimer's.
It'll be downtown Flint on theflat lot, but in Michigan
there's 22 walks, so it's nothard to find one.
(36:14):
And then across the countrythere's 600 and some.
Speaker 2 (36:17):
There's opportunities .
Speaker 1 (36:19):
I will say that I've said it multiple times that all
of our programs are free oureducation, our support service,
our Wanderer, scholarships, care, consultation and it's because
of this, realistically, we haveplenty of fundraisers throughout
the year, as far as the longestday.
People have heard of differentlarger scale events, but Walk to
End Alzheimer's is the largestfundraising effort that we have.
(36:41):
That allows us to continuedoing what we're doing.
I think in 2023, across thecountry raised over $100 million
.
Wow, that went into programsand support went into research,
allows us to continue being thelargest private funder of
dementia resources or researchin the world because of this
event and it's fun, it'senjoyable.
(37:02):
Well, you know, you've been.
Speaker 2 (37:04):
Yeah, it is fun.
It is very fun.
Bring the kids there'sactivities.
You know you've been.
Yeah, it is fun.
It is very fun.
Bring the kids there'sactivities.
Speaker 1 (37:09):
You know there's tables that people are giving
away free stuff bubbles andbananas and whatever so it is a
fun day yes, and then, of course, I'll be there with my purple
tent to go, with my purple shirtand purple tablecloth, I'm with
programs and services andsupport, and it all culminates
in the promise garden ceremony,which is one of the more moving
things you'll experience, aspeople share their stories as to
(37:30):
why they're there and whythey'll continue to be there
until we don't have to be thereanymore.
But it's an event.
I mean the event's free toregister, free to attend.
We just hope that peoplefundraise a little bit along the
way.
Speaker 2 (37:40):
So, douglas Lobdell from the Alzheimer's Association
, thank you for coming on.
This has been very educationaland I really appreciate the
information and the work thatyou do.
Speaker 1 (37:50):
Thank you for having me.
It's nice to see you again,even if it's virtually.
Speaker 2 (37:54):
Right.
So if you enjoyed this episode,don't forget to subscribe.
You can find us on anywherethat you can find podcasts under
the title Advice from yourAdvocates.
If you'd like to see oursmiling faces, you can find that
on YouTube, because our well,most of you might be just here
to listen to the podcast.
Some might want to see thevideo, and that is on YouTube.
(38:15):
You can also find and subscribeon our website, which is
manorlawgroupcom.
So thanks for joining us anddon't forget to subscribe.
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