Registered Nurse, professor, and faith leader Dr. Fayron Epps joins Dana for a wide-ranging conversation about Alzheimer’s and other dementias in the African-American community, and how faith-based programs can provide resources for families and care partners facing the disease. Dana and Dr. Epps discuss the stigma surrounding an Alzheimer’s diagnosis, her faith-based psychoeducation programs ‘Alter,’ ‘Dementia-Friendly Online Worship,’ and ‘Caregiving while Black,’ and the larger implications of her research into dementia in marginalized communities.
Do you have a question for Dana? Email her directly at thememorywhisperer@gmail.com or visit www.thememorywhisperer.com for additional resources.
The Memory Whisperer is written and produced by Dana Territo, with help from editor Blake Langlinais. Additional production support from Ryan Martz and Julia Weaver. Special Thanks to Michael Andrews, a person with dementia, and Innovations in Dementia, CIC for our theme music. Logo graphics by Xdesign.
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See omnystudio.com/listener for privacy information.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:06):
It started with Peggy, someone with Alzheimer's who never knew
my name and who I companion at her nursing home
residence for twenty two years. Her influence in my life
and the values I received from growing up with grandparents
living in our home are the guiding forces in my
love and advocacy for the Alzheimer's population. I am a
(00:27):
newspaper columnist for The Advocate in Baton Rouge, Louisiana, and
the author of What My Grandchildren Taught Me About Alzheimer's Disease.
And now I'm launching a podcast. Hi, you're listening to
Dana Tito the Memory Whisper. Join me in these podcasts
as we engage in thoughtful conversations about Alzheimer's disease and
(00:49):
other dementias.
Speaker 2 (00:53):
I'm so happy today to welcome doctor Feyron Epps. Doctor
Fayron Epps is an Associate professor Tenure Track and join
the Nell hochgin Woodrift School of Nursing in August twenty
nineteen at Emmer University in Atlanta, Georgia. Her programs of
research involve evidence based practices for promoting the quality of
life for African Americans with dementia and their family caregivers.
(01:16):
She is particularly interested in exploring way's religious activities and
spiritual connectedness can provoke meaningful engagement among persons with dementia.
Doctor Epps oversees several faith based and psycho education research
projects such as Faith hat Dementia Friendly Online Worship and
caregiving while Black. Doctor Epps is also the founder of
(01:36):
the only nurse led dementia friendly congregation program called Alter Alter.
For this program, doctor Epps and her interdisciplinary team partner
with African American faith communities to provide them with the
necessary tools and resources needed to support familiespacing dementia. Her
ALTAR program received the twenty twenty one Maud's Innovation and
(01:59):
all Soimer's care Award and also the twenty twenty two
Innovation and Alzheimer's Caregiving Awards by the Roslin and Arthur
Gilbert Foundation. I'm so honored today to welcome doctor Faron
Epps as we not only talk about her award winning
ALTAR program, but also the effects of Alzheimer's disease on
the African American population. Welcome doctor Epps. You have such
(02:24):
an extensive background. I mean, you're into caregiver wellbeing, neurocognitive
diseases like Alzheimer's, vulnerable population, faith based elder health. While
you have a lot of irons in the fire, As
my grandmother would say, what do you like most?
Speaker 3 (02:44):
What is there I like? Well, you know, way, Dana,
all of them are kind of like intertwined. Sure, and
so it's not one more than the other, because I
represent all of them nowhere, no matter where I am whatever,
speaking about whatever research project, they all are intertwined. So
(03:04):
you know, I do faith based research, I do faith
based outreach, and everything is geared towards supporting those families
facing dementia in the African American community, and so supporting caregivers,
care partners, supporting those living with dementia or any type
of cognitive impairment.
Speaker 2 (03:25):
Well, as you well know, those over six million Americans
now living with Alzheimer's, and the numbers keep rising. We
know the greatest risk is age, along with heredity, family history,
and head injury. But with the information we're getting from
the Alzheimer's Association, Hispanics and African Americans and women seem
to be at a higher risk for the disease. Why
(03:46):
do you think we see these differences.
Speaker 3 (03:49):
I think, I mean, it's not about why. I think.
I think there's speculations and you know, the Alzheim's Association
and just put out some of their summary findings that
came from the aai CE and you know, a lot
of it just to me, it just goes right back
to maybe some of the lifestyle factors. And and I
(04:11):
want to say that the lifestyle behaves or the factors
are not sometimes they're not our personal choice, right, but
it's based on where we live, what we're exposed to,
what we have access to, what we do not have
access to. And then you know, now there there's a
lot of literature now it's starting to come out about
racial discrimination impacting cognitive decline, the stress and I think
(04:37):
and when we think about communities of color, uh, just
their everyday life, they they're they we I'm gonna say,
we we face unique challenges, We have different stressors as
we compare to white Americans, and so you know those
(04:57):
things we early on probably didn't think how it impacts
our cognitive health, but it really really does. And I
think now today we're starting to see more research and
more literature and people you know, exploring different theories as
it relates to that.
Speaker 2 (05:19):
I know in the South they talk about kind of
the trifecta diabetes, hypertension, high cholesterol with Does that do
you think have an effect you said about diet and
lifestyle earlier. Do you think that raises the numbers?
Speaker 3 (05:32):
Yeah, exactly because so I do. With me doing work
in the Black community, African American community there, we know
that vascular dementia is is very prevalent, and the vascular
dementia is directly related to those crinic health illnesses that
you just shared. So the diabetes, hypertension, crime, chronic kidney disease,
(05:58):
things that lead to stroll tias and things like that.
And so we spend a lot of time talking about
that and again we talk about it, but if we
really got to get to the solution and we go back,
a lot of these communities don't have access to certain
things that can help prevent or reduce their risk for
some of those chronic health conditions.
Speaker 2 (06:21):
There's a lot of barriers to care in those communities.
Speaker 3 (06:24):
Yeah, yea that there is. There is once we get
into the and even when we get into a care
system or a healthcare system, we are also at risk
effacing some type of discrimination and that's just what it is,
and so we just need to we just need to
be aware. And I think once we acknowledge that and
(06:48):
then do what we can to try to combat that
or just mitigate some of those structural racisms that are
in place and some of these things are then hope
we can start seeing some changes. But in the meantime
they none. You know, MY goal is to be able
to empower these families sure the knowledge that they need,
(07:11):
so when they are out there at the grocery store
or out there, you know, going to a healthcare provider,
that they know what to select, they know what questions
to ask, know what to look out for.
Speaker 2 (07:25):
I guess we need to educate more. Would that would
be a solution?
Speaker 3 (07:29):
I mean education? Of course, we always want to start
off with education, but we you can education is maybe
one puzzle. How about that we can say that education
is one piece of the puzzle and I will never
downplate education. Education is so important, but it's also changing systems,
(07:51):
revisiting how certain things are set up. But yeah, how
they're delivered and how we what can we do administratively
on the back end? What are those things that we
can do and that does not happen overnight. And I think,
you know, coupled with that, the education, we need to
(08:12):
have conversations, So conversations, you know, me being a nurse,
me having conversations with other nurse leaders or healthcare providers
within my network to talk about this.
Speaker 2 (08:28):
Start the conversation.
Speaker 3 (08:31):
That's it. Let's yeh, start the conversation. Let's have these
conversations so we can come up with ways that we
can change the system and put or just put things
in place.
Speaker 2 (08:53):
I've worked with caregivers in this population and they're very
timid to come forward about their loved one having Alzheimer's
or dementia. Do you find that or.
Speaker 3 (09:05):
Yeah, Well, first I would say that across the board,
all racial and ethnic groups, you will find some people
that are like that. Right, Since I do work with
the Black community, I'm just gonna really speak for that
community and for the Black community and the families that
I come across, they are a little bit more. You
can use the word like you said, timid to come
(09:27):
forth with that, and this is true. But I've noticed
more I'm out there, the more I'm having these conversations,
the more I'm doing education that they are less timid,
and it may not happen overnight, but so many people
now come up and say, oh, I care for so
and so, my mom has this blah blah blah where
(09:51):
no one else knew about that. And with me working
in the faith community, this is one of the topics
that are just it's just not discussed, right, many topics
that are not. And so now we're trying to really
kind of break that barrier and reduce that stigma, any shame,
any embarrassment that may be associated with that. You know,
(10:14):
many people are very proud, you know, and you know
now it is okay, and I think you they will
feel more comfortable sharing when they know that who they
shared with understands, right. And that's the one thing, if
you think about it, why would I share what's going
on with my kids to someone that does not have kids.
Speaker 2 (10:37):
You have to get to a point of trust.
Speaker 3 (10:39):
That trust, and then I think it's a little bit
beyond trust, not just trust, just knowing that that other
person under kind of understands. They may have never supported
or cared for anybody with dementia, but if they know
about it, they will be more keen to listen and
(11:02):
maybe can help direct the person that comes to them
good resources. So you know, again to me creating these
dementia friendly communities and my work is dementia friendly faith
communities and keep they have those welcoming have this welcoming
environment so that these families do feel comfortable and they
(11:25):
will come forward. We're sharing what is going on and
get that help that they need and support.
Speaker 2 (11:34):
Not just but that's right, I think across the board,
there's still that stigma, you know. I mean it's a
lot easier to share I have cancer than I have
Alzheimer's or dementia.
Speaker 3 (11:44):
Especially with them there is no cure, right, you know
that that is that is really really hard. We just
did a survey with us against Alzheimer's a lists where
we surveyed I forgot so many people, but it was
about stigma, and so we surveyed caregivers, those living with dimension.
(12:06):
Just people are interested in brain health across the board,
and we'll be working in the upcoming months to shit
light on that to let people know that this still
this still exists, we still need to we have more
work to do toward this.
Speaker 2 (12:22):
Well, let's talk about women and women caregiving because we
know that three and five unpaid caregivers are women, and
this affects multiple generations. It's more common for wives to
provide informal care for a husband than vice versa, and
more than one third of dementia caregivers are daughters. Do
you feel there's enough emphasis and awareness on access to
(12:45):
health and resources for women and particularly African American women.
Speaker 3 (12:50):
Yeah, so I think if we talk about women over all,
I do think. I think there's an abundance of resources.
And it is no secret that majority of caregivers and
primary care partners are women, and so I think there
is a bundance of resources. They have the what is
(13:13):
it the WHAM Women's.
Speaker 2 (13:15):
Alzheimer's Alzheimer's Movement with Maria Striver.
Speaker 3 (13:18):
Yes, and so they've actually supported some of my work
that are doing in the faith communities. But you know,
they're a prime example of how they've taken They've seen
how important this is and they're making sure they develop
a platform for women that are either affected by dementia
or that are caregivers. So I think there are a
(13:39):
lot of resources. And if we go and we now
go and look at African American females again, I think
there's resources But the thing that we have to ask
ourselves and those that are delivering programs and developing programs,
are these resources responsive to the needs of African American crime?
(14:03):
I think now that said, and even if you go
into the LATINX community, yeah, there's a lot of resources,
but are they responsible to what this community, this group needs.
And I think that's the question at hand. And you know,
I have to say, being in this space, everything is
not responsible because what may may be really important in
(14:24):
crisis for the overall may not be for that specific group.
And I think that's the part as we go out
in different areas is to really take a minute and
understand and assess what is needed here, What are needed
for these families, for these caregivers to keep it going,
(14:47):
but to continue to be able to survive thrive on
this journey.
Speaker 2 (15:02):
You know, if you could have a call to action
for the African American community, what would that consist of.
Speaker 3 (15:07):
I don't know if it'd be. My call to action
for the African community would be no longer can be silent. Okay,
Like that's just my overall call. We no longer can
be silent. We have to speak up, We have to
share our experiences, so we can help each other and
learn from each other. As it relates to your question,
(15:28):
you're comment about the disconnective resources, I just think I
don't know if it's a disconnect I just think that
a lot of families, and then not just African American families,
the rural families, our families that are often underserved and
those underserved areas, they just don't know where to start
(15:51):
or where the sources are. And so again, there's so
many resources programs that are out there, and some times
there's so much it could be overwhelming. You know. I
talked to a caregiver and they were like, oh my god,
I can't still be working and then having to navigate
all of this because it is a lot, and you
got to that, so it can be so overwhelming. But
(16:13):
for some communities, they don't even know where to start.
They don't even know what to type in or or
if they don't have internet access, what number to call.
They just don't know that. And sometimes I can I
know this on of my colleagues. They make these assumptions
just because we know it so well, we just make
(16:34):
this assumption that everybody knows to start, and that's not
the case.
Speaker 2 (16:41):
Do you think one or recommendation might be too to
have this particular population and role in more clinical trials
so we would have more research in this area.
Speaker 3 (16:55):
Of course, it'd be so great if we can have
more representation of minority racial ethnic groups in the clinical trials.
I think that would be awesome, awesome, awesome, And I
think it is having having that representation in the clinical trials.
I think it would help with responding to the needs
(17:19):
and just responding to the different groups and making sure
that treatments, treatments, resources, education is relevant and effective.
Speaker 2 (17:34):
What project are you most proud of? Do you lean
into all of them?
Speaker 3 (17:39):
All of them, that's all of you are equally important.
I do want to share that the ALTAR program, so
that dementia Outreach program for congregations are black faith communities,
that is probably the the big one, right because this
is the cornerstone for many communities, but also but specifically
(18:01):
for the Black community, their faith community. The place of
worship has been the cornerstone for a lot of things,
not just being spiritually supported, but also just a place
to go, a safe place to go, a place to
go to get resources. You know, if we think about
civil rights movement. A lot of those movements were started
(18:22):
right at place of worship and so to me, that's
very significant for me to establish these partnerships with black
faith communities across the country to be able to focus
on dementia brain health awareness, that is really significant. And
out of those partnerships, I'm able to introduce them to
the research activities, the psycho education programs that you mentioned,
(18:45):
I'm able to share that with them. And caregiving while
black will probably be Yeah, they just all egals. They
got the faith had for people that cannot get to
their faith community. But the caregiving while black I have.
I think that's another one I'm really excited about because
this one really addresses the the cultural and practical reality
(19:07):
of supporting someone with dementia as a Black American or
as being black in America. And I think this is
this was way overdue and it is much much needed.
You know, you know, I've had caregivers say it felt
like when they're watching these videos because it's a for
us by us approach and they and for them to
(19:30):
see someone that looks like them, to see a healthcare provider,
see another caregiver that looks like them, sharing these tips
relatable examples that really just does something right. The information
is better received. And I'm not saying this caregiving while black.
It's the solution to all. I just think it's one again,
(19:50):
one piece of the puzzle, but it's a way. It's
the introduction to for others to follow behind me, just
introduce seeing these concepts. I'm not teaching anything different, but
it's the my delivery method of being able to show
them that this is how it relates to their life
(20:12):
and then addressing those unique stressors, those discrimination that we face.
Just calling it out as it is and being able
to address that in the education and not trying to
sleep sweep it under the rug. And I think oftentimes
that's what we often do, especially people that are not
comfortable talking about this. They sweep it under the rug.
(20:34):
But let's lift the rug up, let's talk about it,
and let's see how we can work with this, work
around it so we can have better meaningful outcomes.
Speaker 2 (20:46):
We need to let the elephant out of the room.
Speaker 3 (20:49):
That's it, Yes, elephant, I like it.
Speaker 2 (20:56):
Can your program alter? Can that be replicated in other communities,
faith based communities?
Speaker 1 (21:02):
Yeah?
Speaker 3 (21:02):
And so it actually could. So Alter is for the
black faith community, but other faith communities that are interested,
we look forward to working with them and sharing our
model and see how it can be adapted. It is
a uh our model that we have. It is it is.
(21:22):
The uniqueness is that it is tailored to the experiences
right of members of the African American community.
Speaker 2 (21:31):
Black, which what you were talking about earlier. We have
to know and accommodate their needs.
Speaker 3 (21:35):
So yes, yes we do. But these same concepts and
these same pillars that our program is built off of
can be applied to any faith community that's in another
racial ethnic area I mean group right, right.
Speaker 2 (21:52):
If you could leave with just one piece of advisor
recommend recommendation to our listeners, what would you give them
in general? What would you say is so important either
in caregiving or for those affected by the disease, What
would you tell them?
Speaker 3 (22:09):
I think I'll go back to what I said earlier.
We're no longer we no longer can be silent. So
no matter what the role that you're in, So either
being a caregiver, care partner, you being the person living
with dementia or a type of cognitive impairment, or even
(22:29):
being a provider, I think we no longer can just
be hush hush about this. We need to talk and
have conversations.
Speaker 2 (22:38):
Thank you for what all you do. I appreciate your
presence and your time today. You've given us such wonderful insights.
I've appreciated the conversation. Thank you so much.
Speaker 3 (22:47):
For Fehran, You're welcome.
Speaker 1 (22:54):
Well that's it for us today.
Speaker 2 (22:56):
Thank you for listening.
Speaker 1 (22:57):
The Memory Whisper is a production of iHeart and the
Seneca Women Podcast Network. It's produced by me Dana Turedo
in honor of Peggy and all those affected by Alzheimer's disease.
I offer a special thanks to my audio editor, Blake Longelonee,
and to Michael Andrews, a person with dementia, who gave
me permission to use his beautiful flute music for this podcast.
(23:20):
For more information or to reach me directly, head on
over to my website, The Memory Whisper dot com.
Speaker 2 (23:26):
And for those.
Speaker 1 (23:27):
Struggling with a diagnosis, remember my motto, the more you know,
the better it'll go.
Speaker 2 (23:33):
Blessings,
It started with Peggy, someone with Alzheimer's who never knew
my name and who I companion at her nursing home
residence for twenty two years. Her influence in my life
and the values I received from growing up with grandparents
living in our home are the guiding forces in my
love and advocacy for the Alzheimer's population. I am a
(00:27):
newspaper columnist for The Advocate in Baton Rouge, Louisiana, and
the author of What My Grandchildren Taught Me About Alzheimer's Disease.
And now I'm launching a podcast. Hi, you're listening to
Dana Tito the Memory Whisper. Join me in these podcasts
as we engage in thoughtful conversations about Alzheimer's disease and
(00:49):
other dementias.
Speaker 2 (00:53):
I'm so happy today to welcome doctor Feyron Epps. Doctor
Fayron Epps is an Associate professor Tenure Track and join
the Nell hochgin Woodrift School of Nursing in August twenty
nineteen at Emmer University in Atlanta, Georgia. Her programs of
research involve evidence based practices for promoting the quality of
life for African Americans with dementia and their family caregivers.
(01:16):
She is particularly interested in exploring way's religious activities and
spiritual connectedness can provoke meaningful engagement among persons with dementia.
Doctor Epps oversees several faith based and psycho education research
projects such as Faith hat Dementia Friendly Online Worship and
caregiving while Black. Doctor Epps is also the founder of
(01:36):
the only nurse led dementia friendly congregation program called Alter Alter.
For this program, doctor Epps and her interdisciplinary team partner
with African American faith communities to provide them with the
necessary tools and resources needed to support familiespacing dementia. Her
ALTAR program received the twenty twenty one Maud's Innovation and
(01:59):
all Soimer's care Award and also the twenty twenty two
Innovation and Alzheimer's Caregiving Awards by the Roslin and Arthur
Gilbert Foundation. I'm so honored today to welcome doctor Faron
Epps as we not only talk about her award winning
ALTAR program, but also the effects of Alzheimer's disease on
the African American population. Welcome doctor Epps. You have such
(02:24):
an extensive background. I mean, you're into caregiver wellbeing, neurocognitive
diseases like Alzheimer's, vulnerable population, faith based elder health. While
you have a lot of irons in the fire, As
my grandmother would say, what do you like most?
Speaker 3 (02:44):
What is there I like? Well, you know, way, Dana,
all of them are kind of like intertwined. Sure, and
so it's not one more than the other, because I
represent all of them nowhere, no matter where I am whatever,
speaking about whatever research project, they all are intertwined. So
(03:04):
you know, I do faith based research, I do faith
based outreach, and everything is geared towards supporting those families
facing dementia in the African American community, and so supporting caregivers,
care partners, supporting those living with dementia or any type
of cognitive impairment.
Speaker 2 (03:25):
Well, as you well know, those over six million Americans
now living with Alzheimer's, and the numbers keep rising. We
know the greatest risk is age, along with heredity, family history,
and head injury. But with the information we're getting from
the Alzheimer's Association, Hispanics and African Americans and women seem
to be at a higher risk for the disease. Why
(03:46):
do you think we see these differences.
Speaker 3 (03:49):
I think, I mean, it's not about why. I think.
I think there's speculations and you know, the Alzheim's Association
and just put out some of their summary findings that
came from the aai CE and you know, a lot
of it just to me, it just goes right back
to maybe some of the lifestyle factors. And and I
(04:11):
want to say that the lifestyle behaves or the factors
are not sometimes they're not our personal choice, right, but
it's based on where we live, what we're exposed to,
what we have access to, what we do not have
access to. And then you know, now there there's a
lot of literature now it's starting to come out about
racial discrimination impacting cognitive decline, the stress and I think
(04:37):
and when we think about communities of color, uh, just
their everyday life, they they're they we I'm gonna say,
we we face unique challenges, We have different stressors as
we compare to white Americans, and so you know those
(04:57):
things we early on probably didn't think how it impacts
our cognitive health, but it really really does. And I
think now today we're starting to see more research and
more literature and people you know, exploring different theories as
it relates to that.
Speaker 2 (05:19):
I know in the South they talk about kind of
the trifecta diabetes, hypertension, high cholesterol with Does that do
you think have an effect you said about diet and
lifestyle earlier. Do you think that raises the numbers?
Speaker 3 (05:32):
Yeah, exactly because so I do. With me doing work
in the Black community, African American community there, we know
that vascular dementia is is very prevalent, and the vascular
dementia is directly related to those crinic health illnesses that
you just shared. So the diabetes, hypertension, crime, chronic kidney disease,
(05:58):
things that lead to stroll tias and things like that.
And so we spend a lot of time talking about
that and again we talk about it, but if we
really got to get to the solution and we go back,
a lot of these communities don't have access to certain
things that can help prevent or reduce their risk for
some of those chronic health conditions.
Speaker 2 (06:21):
There's a lot of barriers to care in those communities.
Speaker 3 (06:24):
Yeah, yea that there is. There is once we get
into the and even when we get into a care
system or a healthcare system, we are also at risk
effacing some type of discrimination and that's just what it is,
and so we just need to we just need to
be aware. And I think once we acknowledge that and
(06:48):
then do what we can to try to combat that
or just mitigate some of those structural racisms that are
in place and some of these things are then hope
we can start seeing some changes. But in the meantime
they none. You know, MY goal is to be able
to empower these families sure the knowledge that they need,
(07:11):
so when they are out there at the grocery store
or out there, you know, going to a healthcare provider,
that they know what to select, they know what questions
to ask, know what to look out for.
Speaker 2 (07:25):
I guess we need to educate more. Would that would
be a solution?
Speaker 3 (07:29):
I mean education? Of course, we always want to start
off with education, but we you can education is maybe
one puzzle. How about that we can say that education
is one piece of the puzzle and I will never
downplate education. Education is so important, but it's also changing systems,
(07:51):
revisiting how certain things are set up. But yeah, how
they're delivered and how we what can we do administratively
on the back end? What are those things that we
can do and that does not happen overnight. And I think,
you know, coupled with that, the education, we need to
(08:12):
have conversations, So conversations, you know, me being a nurse,
me having conversations with other nurse leaders or healthcare providers
within my network to talk about this.
Speaker 2 (08:28):
Start the conversation.
Speaker 3 (08:31):
That's it. Let's yeh, start the conversation. Let's have these
conversations so we can come up with ways that we
can change the system and put or just put things
in place.
Speaker 2 (08:53):
I've worked with caregivers in this population and they're very
timid to come forward about their loved one having Alzheimer's
or dementia. Do you find that or.
Speaker 3 (09:05):
Yeah, Well, first I would say that across the board,
all racial and ethnic groups, you will find some people
that are like that. Right, Since I do work with
the Black community, I'm just gonna really speak for that
community and for the Black community and the families that
I come across, they are a little bit more. You
can use the word like you said, timid to come
(09:27):
forth with that, and this is true. But I've noticed
more I'm out there, the more I'm having these conversations,
the more I'm doing education that they are less timid,
and it may not happen overnight, but so many people
now come up and say, oh, I care for so
and so, my mom has this blah blah blah where
(09:51):
no one else knew about that. And with me working
in the faith community, this is one of the topics
that are just it's just not discussed, right, many topics
that are not. And so now we're trying to really
kind of break that barrier and reduce that stigma, any shame,
any embarrassment that may be associated with that. You know,
(10:14):
many people are very proud, you know, and you know
now it is okay, and I think you they will
feel more comfortable sharing when they know that who they
shared with understands, right. And that's the one thing, if
you think about it, why would I share what's going
on with my kids to someone that does not have kids.
Speaker 2 (10:37):
You have to get to a point of trust.
Speaker 3 (10:39):
That trust, and then I think it's a little bit
beyond trust, not just trust, just knowing that that other
person under kind of understands. They may have never supported
or cared for anybody with dementia, but if they know
about it, they will be more keen to listen and
(11:02):
maybe can help direct the person that comes to them
good resources. So you know, again to me creating these
dementia friendly communities and my work is dementia friendly faith
communities and keep they have those welcoming have this welcoming
environment so that these families do feel comfortable and they
(11:25):
will come forward. We're sharing what is going on and
get that help that they need and support.
Speaker 2 (11:34):
Not just but that's right, I think across the board,
there's still that stigma, you know. I mean it's a
lot easier to share I have cancer than I have
Alzheimer's or dementia.
Speaker 3 (11:44):
Especially with them there is no cure, right, you know
that that is that is really really hard. We just
did a survey with us against Alzheimer's a lists where
we surveyed I forgot so many people, but it was
about stigma, and so we surveyed caregivers, those living with dimension.
(12:06):
Just people are interested in brain health across the board,
and we'll be working in the upcoming months to shit
light on that to let people know that this still
this still exists, we still need to we have more
work to do toward this.
Speaker 2 (12:22):
Well, let's talk about women and women caregiving because we
know that three and five unpaid caregivers are women, and
this affects multiple generations. It's more common for wives to
provide informal care for a husband than vice versa, and
more than one third of dementia caregivers are daughters. Do
you feel there's enough emphasis and awareness on access to
(12:45):
health and resources for women and particularly African American women.
Speaker 3 (12:50):
Yeah, so I think if we talk about women over all,
I do think. I think there's an abundance of resources.
And it is no secret that majority of caregivers and
primary care partners are women, and so I think there
is a bundance of resources. They have the what is
(13:13):
it the WHAM Women's.
Speaker 2 (13:15):
Alzheimer's Alzheimer's Movement with Maria Striver.
Speaker 3 (13:18):
Yes, and so they've actually supported some of my work
that are doing in the faith communities. But you know,
they're a prime example of how they've taken They've seen
how important this is and they're making sure they develop
a platform for women that are either affected by dementia
or that are caregivers. So I think there are a
(13:39):
lot of resources. And if we go and we now
go and look at African American females again, I think
there's resources But the thing that we have to ask
ourselves and those that are delivering programs and developing programs,
are these resources responsive to the needs of African American crime?
(14:03):
I think now that said, and even if you go
into the LATINX community, yeah, there's a lot of resources,
but are they responsible to what this community, this group needs.
And I think that's the question at hand. And you know,
I have to say, being in this space, everything is
not responsible because what may may be really important in
(14:24):
crisis for the overall may not be for that specific group.
And I think that's the part as we go out
in different areas is to really take a minute and
understand and assess what is needed here, What are needed
for these families, for these caregivers to keep it going,
(14:47):
but to continue to be able to survive thrive on
this journey.
Speaker 2 (15:02):
You know, if you could have a call to action
for the African American community, what would that consist of.
Speaker 3 (15:07):
I don't know if it'd be. My call to action
for the African community would be no longer can be silent. Okay,
Like that's just my overall call. We no longer can
be silent. We have to speak up, We have to
share our experiences, so we can help each other and
learn from each other. As it relates to your question,
(15:28):
you're comment about the disconnective resources, I just think I
don't know if it's a disconnect I just think that
a lot of families, and then not just African American families,
the rural families, our families that are often underserved and
those underserved areas, they just don't know where to start
(15:51):
or where the sources are. And so again, there's so
many resources programs that are out there, and some times
there's so much it could be overwhelming. You know. I
talked to a caregiver and they were like, oh my god,
I can't still be working and then having to navigate
all of this because it is a lot, and you
got to that, so it can be so overwhelming. But
(16:13):
for some communities, they don't even know where to start.
They don't even know what to type in or or
if they don't have internet access, what number to call.
They just don't know that. And sometimes I can I
know this on of my colleagues. They make these assumptions
just because we know it so well, we just make
(16:34):
this assumption that everybody knows to start, and that's not
the case.
Speaker 2 (16:41):
Do you think one or recommendation might be too to
have this particular population and role in more clinical trials
so we would have more research in this area.
Speaker 3 (16:55):
Of course, it'd be so great if we can have
more representation of minority racial ethnic groups in the clinical trials.
I think that would be awesome, awesome, awesome, And I
think it is having having that representation in the clinical trials.
I think it would help with responding to the needs
(17:19):
and just responding to the different groups and making sure
that treatments, treatments, resources, education is relevant and effective.
Speaker 2 (17:34):
What project are you most proud of? Do you lean
into all of them?
Speaker 3 (17:39):
All of them, that's all of you are equally important.
I do want to share that the ALTAR program, so
that dementia Outreach program for congregations are black faith communities,
that is probably the the big one, right because this
is the cornerstone for many communities, but also but specifically
(18:01):
for the Black community, their faith community. The place of
worship has been the cornerstone for a lot of things,
not just being spiritually supported, but also just a place
to go, a safe place to go, a place to
go to get resources. You know, if we think about
civil rights movement. A lot of those movements were started
(18:22):
right at place of worship and so to me, that's
very significant for me to establish these partnerships with black
faith communities across the country to be able to focus
on dementia brain health awareness, that is really significant. And
out of those partnerships, I'm able to introduce them to
the research activities, the psycho education programs that you mentioned,
(18:45):
I'm able to share that with them. And caregiving while
black will probably be Yeah, they just all egals. They
got the faith had for people that cannot get to
their faith community. But the caregiving while black I have.
I think that's another one I'm really excited about because
this one really addresses the the cultural and practical reality
(19:07):
of supporting someone with dementia as a Black American or
as being black in America. And I think this is
this was way overdue and it is much much needed.
You know, you know, I've had caregivers say it felt
like when they're watching these videos because it's a for
us by us approach and they and for them to
(19:30):
see someone that looks like them, to see a healthcare provider,
see another caregiver that looks like them, sharing these tips
relatable examples that really just does something right. The information
is better received. And I'm not saying this caregiving while black.
It's the solution to all. I just think it's one again,
(19:50):
one piece of the puzzle, but it's a way. It's
the introduction to for others to follow behind me, just
introduce seeing these concepts. I'm not teaching anything different, but
it's the my delivery method of being able to show
them that this is how it relates to their life
(20:12):
and then addressing those unique stressors, those discrimination that we face.
Just calling it out as it is and being able
to address that in the education and not trying to
sleep sweep it under the rug. And I think oftentimes
that's what we often do, especially people that are not
comfortable talking about this. They sweep it under the rug.
(20:34):
But let's lift the rug up, let's talk about it,
and let's see how we can work with this, work
around it so we can have better meaningful outcomes.
Speaker 2 (20:46):
We need to let the elephant out of the room.
Speaker 3 (20:49):
That's it, Yes, elephant, I like it.
Speaker 2 (20:56):
Can your program alter? Can that be replicated in other communities,
faith based communities?
Speaker 1 (21:02):
Yeah?
Speaker 3 (21:02):
And so it actually could. So Alter is for the
black faith community, but other faith communities that are interested,
we look forward to working with them and sharing our
model and see how it can be adapted. It is
a uh our model that we have. It is it is.
(21:22):
The uniqueness is that it is tailored to the experiences
right of members of the African American community.
Speaker 2 (21:31):
Black, which what you were talking about earlier. We have
to know and accommodate their needs.
Speaker 3 (21:35):
So yes, yes we do. But these same concepts and
these same pillars that our program is built off of
can be applied to any faith community that's in another
racial ethnic area I mean group right, right.
Speaker 2 (21:52):
If you could leave with just one piece of advisor
recommend recommendation to our listeners, what would you give them
in general? What would you say is so important either
in caregiving or for those affected by the disease, What
would you tell them?
Speaker 3 (22:09):
I think I'll go back to what I said earlier.
We're no longer we no longer can be silent. So
no matter what the role that you're in, So either
being a caregiver, care partner, you being the person living
with dementia or a type of cognitive impairment, or even
(22:29):
being a provider, I think we no longer can just
be hush hush about this. We need to talk and
have conversations.
Speaker 2 (22:38):
Thank you for what all you do. I appreciate your
presence and your time today. You've given us such wonderful insights.
I've appreciated the conversation. Thank you so much.
Speaker 3 (22:47):
For Fehran, You're welcome.
Speaker 1 (22:54):
Well that's it for us today.
Speaker 2 (22:56):
Thank you for listening.
Speaker 1 (22:57):
The Memory Whisper is a production of iHeart and the
Seneca Women Podcast Network. It's produced by me Dana Turedo
in honor of Peggy and all those affected by Alzheimer's disease.
I offer a special thanks to my audio editor, Blake Longelonee,
and to Michael Andrews, a person with dementia, who gave
me permission to use his beautiful flute music for this podcast.
(23:20):
For more information or to reach me directly, head on
over to my website, The Memory Whisper dot com.
Speaker 2 (23:26):
And for those.
Speaker 1 (23:27):
Struggling with a diagnosis, remember my motto, the more you know,
the better it'll go.
Speaker 2 (23:33):
Blessings,
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