November 19, 2025 • 20 mins
This special holiday episode of Spotlight on Care offers practical, compassionate guidance for planning celebrations with loved ones living with Alzheimer’s or other dementias. Co-hosts Virginia and Steve share personal stories and helpful tips for creating calm, meaningful gatherings—from keeping events small and familiar to preparing guests in advance. They discuss the value of routines over traditions, involving the person with dementia in simple activities, and recognizing signs of stress or fatigue. The conversation encourages caregivers to slow down, adjust expectations, and focus on joy in the moment.
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Episode Transcript
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(00:06):
From the University ofCalifornia, Irvine, this is UCI
MIND's Spotlight on Care, thepodcast where we share stories,
experiences, tips and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Virginia (00:22):
Welcome to Spotlight on Care. I'm Virginia Naeve, and
I'm here with my wonderfulco-host, Mr. Steve O'Leary. We
got to thinking one day that itmight be helpful to our
listeners to hear some practicaltips on caring for a loved one
with Alzheimer's or otherdementia during celebrations,
(00:42):
birthdays, holidays and otherimportant family gatherings. We
all know that those things canbe filled with joy and tradition
and many happy family times, butthey can also bring stress,
sadness and a deep sense ofchange. How do you manage
everything and still findmoments of peace and joy for
(01:05):
yourself and family members,whether you are hosting,
visiting or just trying to getthrough the celebration, you are
not alone. And I would like tomention that we all could use a
little advice on how to handlethose situations. So let's get
started. I'm going to startasking the first question for
(01:27):
Steve, which will discuss theimportance of planning ahead and
setting realistic expectations.
Steve (01:35):
Yeah, that's a good segue after what you set up, because
things change. You have tomaintain your flexibility, you
have to really know a little bitabout what's going to happen on
the day, so you have to planahead and be prepared for it,
but at the same time, you haveto be aware that things are
going to change. Thinking aboutit from the standpoint of
traditions and routines, andwe're going to cover that a
(01:56):
little bit later in more detail,but the reality is, is that
quality of the experience is farmore important than quantity. So
don't worry about the fact thatyou were planning three hours.
If it's apparent everybody's hada great time and it's an hour
and a half, then it's great. Sobe open to new memories as you
go through these things. Knowthat the holiday or the
(02:17):
celebration that you'reexperiencing will be unique. And
kind of put your hat on aboutthe fact that this is going to
be a different one. Maybe someof the things that you used to
do will be different in thiscase. So try and prevent chaos.
The way this gets executed issometimes 20 people at a
celebration doesn't work as wellas maybe five or six. Trying to
(02:41):
figure out how to make it moreimportant for the loved one is
really the issue, rather thanhaving way too many people.
Virginia (02:47):
That's the key.
Steve (02:48):
So let me ask Virginia the next question
and familiar environment.
Virginia (02:55):
Well, if there are people out there like I am, the
holidays, the decorations comeout, the lights get strong. It
is crazy, chaos, fun if youdon't have dementia. I think
with dementia, we all need torealize that the brain has
(03:16):
changes and damage, and itaffects senses. Too much light,
too many sounds and too manypeople will guarantee agitation
for that person. So you justhave to remain sensitive to the
fact that those things, perhapsat one time in that person's
life, they loved it meant theyloved crowds and lots of food
(03:39):
and lots of things going on, butthat is sure to change with
dementia. Building in resttimes, there might be a place in
your home where the person withdementia can just take a break
from the fun chaos. So maybethere's a Barcalounger sitting
(04:00):
in a different room and justthat break can really help.
Photo albums, I found veryhelpful with my mom. It doesn't
have to be long, it doesn't haveto be thick and big, just grab a
few pictures, organize them, andat the bottom of the picture,
put the name of the person orpeople who are in the photo, and
(04:24):
that person with dementia cansit there and enjoy that photo
album. I found it extremelyhelpful. You just have to
redefine your concept of what isa successful event, and if you
found that there was some joyand some creative happiness that
(04:46):
happened during that time, thenconsider that a success. Okay,
Steve, talk about the importanceof routine over tradition.
Steve (04:57):
Yeah, this is a tough one, because I experienced a
little of both, and we- I'll getto that story in a second- but
routine can be as simple asgetting up in the morning and
going to the breakfast table,eating breakfast, putting the
dishes in the sink. This givesyour loved one a sense of
control. That's what it's reallyall about when you talk about
the importance of routine andwhen the routine gets off,
(05:20):
stress increases. Stressincreases for your loved one,
and also increases for you,because you feel that stress
from your loved one. So insteadof making the tradition a
priority, focus on the routineof the process. So, you know, if
you'd always had Christmasdinner or birthdays were always
at a certain time at dinner,maybe you switch it up to a time
(05:40):
that's better for them. I thinkthat's really critical. And also
be aware of sundowning is aproblem, especially when you
think about doing events laterin the day. So we talked a
little bit about this already,about too many people, and I
think this is also true here interms of having the whole
family. Somebody suggested,well, maybe you even break up a
party, you know, especiallyChristmas, you could have
(06:02):
something one day and somethingthe next day. Who cares whether
or not it's on the 25th and the26th or the 24th and the 25th?
If it's broken up and they canhandle it better that way,
that's a great idea. So try andmaintain familiarity, and this
will lead into my story, butsmells and candles and things
like that are valuable. Singingis wonderful. In terms of music,
(06:25):
even have some familiar music inthe background is always
comforting and calming. I thinkthat also my story is, don't try
and make everything maintainfamiliarity. In my case, my wife
was a Dickens village fanatic.
Patty had, I think, somethinglike 40 houses and all sorts of
different people. We woulddecorate every place we could
(06:47):
with these families. And so Irecreated all of her Dickens
families with the help of mydaughter. And she was living in
a community at the time, and webrought her home, and I was just
waiting for her to go, "Oh, lookat this and oh, look at that."
And it was all something shehadn't seen in such a long time.
She didn't remember it. In fact,it was a little intimidating,
(07:09):
because we tried one type ofscene and another type of scene.
So I think this is a goodexample. We've been fine if we
just had a few pieces outinstead of trying to do the
whole Megillah. I think that'sthe beauty of making sure that
you have some routine andrealize that their attention
span is a lot less than it wouldbe previously.
Virginia (07:28):
That is so interesting that she did not remember that
she used to do that.
Steve (07:33):
And I think this talks just a little bit about routine
versus tradition. One thing toremember if you're going out to
eat, remember that home isbetter than restaurant.
Virginia (07:43):
Agreed.
Steve (07:43):
You know, you might like the idea that it's going to
sound more special and there'llbe a cake or whatever it is, but
that's another totally differentenvironment that they're not
accustomed to, so routine ofdoing it at home will be easier
and much more enjoyable forthem.
Virginia (07:57):
My mom had a reaction in a restaurant one time. We
thought it was going to be justfine, and everybody was happy.
And probably 10 minutes into themeal, she said, "Well, it's time
to go."
Steve (08:09):
Yeah, my experience was we would have special birthday
dinners with friends, you know,and we'd have maybe eight people
at the dinner, and she couldn'tfollow the conversation, so she
would shut down. And you couldjust see how unhappy she was and
stressful, whereas if we justhad maybe two couples, it would
have been a lot easier for herto follow. So again, thinking
about making it smaller, makingit better is a really good idea.
(08:31):
Speaking about doing things withfriends, let's talk about
preparing guests in advance.
Virginia (08:37):
I look back and I think I should have done a
little bit more of this. Friendsand family can feel out of
control, just as much as theperson with dementia if they
didn't know what to expect andthey're witnessing someone who
doesn't recognize them. Theadvice here is to tell your
(08:57):
friends and family what toexpect for whatever stage your
loved one is in. Dementia is aprogressive brain damage. I
looked up the name of thisbecause I didn't know this, but
there's a part of the brain thatis responsible for facial
recognition, and it's calledfusiform gyrus, and that gets
(09:18):
damaged, and the person withdementia can sit there and
think, "I don't know thesepeople. I don't know who they
are." If you explain that toyour relatives and your family
and your friends who come tocelebrate that they may not get
recognized, that will hopefullyease the pain that they're going
(09:39):
to feel, or the rejection andthe hurt if their loved one
doesn't recognize them. Be sureto have people when they
approach your loved one repeattheir names. Either someone
standing there can say, "Oh,this is your cousin Alice. This
is your uncle, Bob." Thatrelieves a lot of tension for
(10:02):
the person with dementia rightoff the bat, because they don't
have to remember that person'sname.
Steve (10:07):
So even when other people arrive, like you said,
repeating, you could say, "Well,yeah, this is Alice," like
you're reintroducing them to thewhole group, but you're also
reintroducing them to your
Virginia (10:17):
Yes, I think that you will, if you look at the face of
the person with dementia, theywill have this look of relief
that, "Oh, I don't have toremember that name."
Steve (10:27):
Yeah. I often thought about name tags, but then again,
it takes some of thepersonalization off. But it's an
interesting idea.
Virginia (10:35):
I love name tags.
Steve (10:36):
Yeah, I remember how many times we're in a meeting and
we're going to a group setting.
And I know that person, but Ican't remember their name. It
happens to all of us.
Virginia (10:44):
And you don't want to get caught looking at their name
tag.
Steve (10:48):
No. Well, yeah, you can just glance.
Virginia (10:50):
Yeah, you got to learn how to glance.
Steve (10:51):
Oh, maybe that's an interesting idea.
Virginia (10:53):
I know it's true. I haven't really thought about
that, but honestly, who cares?
And it would just make thatperson feel so much better. All
of us have a tendency to say,"Oh, do you remember when we
-whatever fill in the blank- andthe person is not going to
remember, most likely, what thatwonderful event was, and they
(11:14):
are forced to kind of fake areaction. So generally, you tell
your guests, don't use the
phrase (11:23):
"Do you remember?" It would just alleviate all kinds
of difficulties if they rememberthat.
Steve (11:30):
You're kind of bringing up the issue that they're most
worried about.
Virginia (11:33):
That's right.
Steve (11:34):
By saying, "Do you remember?" "I don't remember.
That's why I have this problem."But yeah, I think that's really
great advice, because you canjust start by saying, "Hey, was
a lot of fun when we did this,this and this," and always
remember- sorry- that alwaysremember that their short term
memory isn't as good as theirlong term memory. So if you're
(11:55):
going to tell a story that youthink they might recall, you
could certainly tell somethingthat might be further away in
your relationship, rather thansomething that happened like
last week.
Virginia (12:03):
That is absolutely true. My mom grew up down the
street from Cornell Universityin Ithaca, New York, and they
rented the third floor tostudents, and mom could very
easily talk about the fact thatthey had to do the laundry for
those students, but she couldn'tremember my name.
Steve (12:21):
That's a perfect example.
I think that kind of making meanother comment about the value
of photo albums. If you want tohelp get your loved one in the
mood for a celebration, never abad idea to bring out a photo
album prior to it to get themthinking about how much fun it
was and how these people arethey care. And I think Virginia
made an excellent point. It'sgreat to look at pictures, but I
(12:42):
don't remember what the namesare, so make sure even the names
and where it was, especiallyolder situations.
Virginia (12:49):
Yeah, no, that's an excellent idea. Just those
little tips can kind of ease thesituation and actually make
everybody kind of have a wholelot more fun. If you give your
loved one something to do, andalso have the guests pitch in a
little bit that can help asituation. My mom used to like
(13:10):
to fold napkins. Setting thetable can be a little confusing,
but it wouldn't hurt for them tobe given things to put on the
table, just wherever, and thensomebody else can arrange the
silverware. But if they're givenlittle tasks, I think it can
help asking your guests to"Gosh, would you mind picking up
a pie, some contribution to thecelebration?" People like to
(13:35):
help.
Steve (13:36):
I think you're really touching on an important issue
there, especially for the lovedone. They want to be involved.
If they're involved, they'regoing to feel more valued. If
everything moves around them andthey have no role in any of it,
they're going to feel likethey're not really included.
Virginia (13:51):
It's true.
Steve (13:51):
And I think you really cover a point. It could be
simple things, even in some ofthe preparation of some of the
meals, because, least in Patty'scase, she had all of these
things written on cards. So evenif it was discussion that Casey
and she were having about makingsomething together, she could be
reading what was on the card andcontributing to the process for
(14:11):
Casey who was actually doing thecooking. So there's lots of ways
to keep feeling like they'revalued.
Virginia (14:17):
Absolutely, getting good at monitoring for signs of
fatigue or stress. I couldalways tell when mom was getting
stressed. She fidgeted a lot.
She fidgeted with herfingernails, and she never did
that before dementia. So littlethings. Just look at their face,
if their face looks like they'renot having a good time that
(14:39):
little break of going intoanother room or just having a
little rest somewhere else, canrefresh them, and they can be
ready to come back and enjoy thecelebration, taking a break if
needed.
Steve (14:57):
Especially if you're the primary caregiver, you're going
to have a greater sense ofwhat's going on with your loved
one in these situations. Irecall, as I said, being out
many times for a meal withfriends, even at their home. And
of course, they're assumingeverything is just natural. As
Virginia said, I don't think Idid a very good job of briefing
(15:18):
them, and we got there, andthey're carrying on a
conversation and a speed withwhich the conversation is
occurring. And Patty couldn'tkeep up, so she tuned out. So I
think that you have to thinkabout how you have to slow
things down, slow things downfor them and slow things down
for yourself. What's the rush?
It's not like we have to get itdone and we can cover less and
have more fun and make itsimple. I love your suggestion
(15:40):
about doing things while you'retogether that makes it fun, and
the more stuff you do that, evenif it's silly, stuff, like, you
know, blowing little tootors, orputting a hat on your head or
whatever it might be, make itfestive like that.
Virginia (15:55):
I know traditions you kind of want your celebration to
go like the successful onesalways have before. But for this
situation with someone withdementia, it's not going to be
the same, so you have to just gowith the flow.
Steve (16:12):
Yeah, and you know as it's going along, you can sense
that it's done. I think Virginiamade a really good idea about
taking a break to see if you canrecapture it, but sometimes
you'll see that your loved onejust isn't participating any
more, can't keep up or justshutting down. So a break
becomes purposeful. But let'ssay you planned on a dinner that
was going to be two or threehours together, and all of a
(16:34):
sudden it was apparent rightafter the meal that it was over.
It's okay. Yeah, and makeeverybody aware in terms of the
preparing, how she's doing, orhe's doing, and how they're
feeling. And the key is thatthey come away from this
experience in a positive way,rather than feeling like, "Oh my
gosh, this was just terrible."
Virginia (16:53):
Right, you want to look back and think we had a
joyful, successful celebration,and we just had to go with the
flow.
Steve (17:01):
Well, how does that relate to the person who's
actually doing the planning, andwhat do they have to worry
about?
Virginia (17:08):
I was going to ask you, Steve, I think you came up
with some good ideas onprioritizing self care.
Steve (17:14):
Well, I think self care is, you know, critical. You need
to make sure you are lessstressed going into these
arrangements, and if you'reexcited, you're anticipating
that it's going to be wonderfuland if you build your
expectations way up there andall of a sudden it doesn't
happen, the stress that you'regoing to feel,like the food
wasn't ready on time, or someoneshowed up late, all of these
(17:36):
things, you have to adapt and gowith the flow on these things.
And reducing your stress interms of getting prepared,
getting a good night's rest,making sure you're exercising.
You don't want to run into oneof these celebrations and be
exhausted. If you came off aflight and you're running into
something, you got to take timefor yourself. Of course, that
goes for any situation, really,but especially for a celebration
(17:57):
that you want to be special.
Virginia (17:58):
It's true. Just see if you can take a break and go take
a walk, either before or after.
That will help.
Steve (18:05):
I do this discussion about, how do you deal with
stressful situations while we'retalking about it, and I remember
learning a technique aboutliterally excusing yourself from
a conversation. Patty would beasking me questions for the
umpteenth time, and I would say,"Ah, excuse me, I need to go to
the bathroom." I didn't reallyneed to go to the bathroom, but
(18:26):
it gave me that mental break soI didn't get upset or angry
about the fact that she wasdoing it. Those are the kind of
things that you can do thatreally help.
Virginia (18:34):
Yes, good advice.
Well, Steve, what do you think,did we forget anything?
Steve (18:40):
You know, I think one thing we could talk a little bit
about is not being fearful aboutthese celebrations and how
meaningful they can be for yourloved one, as well as your-
especially your intimatefamily,- as long as you don't
set expectations way too high,it's an opportunity. And in
Patty's case, she was in acommunity, and I brought her
(19:02):
home, thinking this was going tobe just like all the Christmases
we'd had. So my expectationswere sky high, and it was a
disappointment. And actually, itworked out pretty good when I
reflected on it, but I expectedlike I said, she was going to
recognize all the work we'd putin and how excited she was, and
that were all her favoritemeals. Really, it was a good
(19:25):
time together, and that's allthat really mattered. So kind of
realize that it can't beeverything that you used to
have. It can be, as we said,routines are more important.
Virginia (19:34):
That's right, very good. Well?
Steve (19:36):
Well, let's just kind of wrap up by saying thank you,
Virginia. She put a lot of workinto all these questions, as
usual, and you know, it's agreat time in the year. And just
look forward to taking advantageof it, enjoying it. And we hope
you'll tune in for futurepodcasts. We always look forward
to that. And if you have anytips that you'd like to send to
us about topics we should cover,we'd love that.
Virginia (19:58):
Love that. Thank you very much.
Steve (20:00):
You're welcome. Thank you.
Spotlight on Care is produced bythe University of California,
Irvine, Institute on MemoryImpairments and Neurological
Disorders, UCI MIND. Interviewsfocus on personal caregiving
journeys and may not representthe views of UCI MIND.
Individuals concerned aboutcognitive disorders, prevention,
(20:20):
or treatment should seek expertdiagnosis and care. Please
subscribe to the Spotlight onCare podcast. Wherever you
listen for more information,visit mind.uci.edu.
From the University ofCalifornia, Irvine, this is UCI
MIND's Spotlight on Care, thepodcast where we share stories,
experiences, tips and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Virginia (00:22):
Welcome to Spotlight on Care. I'm Virginia Naeve, and
I'm here with my wonderfulco-host, Mr. Steve O'Leary. We
got to thinking one day that itmight be helpful to our
listeners to hear some practicaltips on caring for a loved one
with Alzheimer's or otherdementia during celebrations,
(00:42):
birthdays, holidays and otherimportant family gatherings. We
all know that those things canbe filled with joy and tradition
and many happy family times, butthey can also bring stress,
sadness and a deep sense ofchange. How do you manage
everything and still findmoments of peace and joy for
(01:05):
yourself and family members,whether you are hosting,
visiting or just trying to getthrough the celebration, you are
not alone. And I would like tomention that we all could use a
little advice on how to handlethose situations. So let's get
started. I'm going to startasking the first question for
(01:27):
Steve, which will discuss theimportance of planning ahead and
setting realistic expectations.
Steve (01:35):
Yeah, that's a good segue after what you set up, because
things change. You have tomaintain your flexibility, you
have to really know a little bitabout what's going to happen on
the day, so you have to planahead and be prepared for it,
but at the same time, you haveto be aware that things are
going to change. Thinking aboutit from the standpoint of
traditions and routines, andwe're going to cover that a
(01:56):
little bit later in more detail,but the reality is, is that
quality of the experience is farmore important than quantity. So
don't worry about the fact thatyou were planning three hours.
If it's apparent everybody's hada great time and it's an hour
and a half, then it's great. Sobe open to new memories as you
go through these things. Knowthat the holiday or the
(02:17):
celebration that you'reexperiencing will be unique. And
kind of put your hat on aboutthe fact that this is going to
be a different one. Maybe someof the things that you used to
do will be different in thiscase. So try and prevent chaos.
The way this gets executed issometimes 20 people at a
celebration doesn't work as wellas maybe five or six. Trying to
(02:41):
figure out how to make it moreimportant for the loved one is
really the issue, rather thanhaving way too many people.
Virginia (02:47):
That's the key.
Steve (02:48):
So let me ask Virginia the next question
and familiar environment.
Virginia (02:55):
Well, if there are people out there like I am, the
holidays, the decorations comeout, the lights get strong. It
is crazy, chaos, fun if youdon't have dementia. I think
with dementia, we all need torealize that the brain has
(03:16):
changes and damage, and itaffects senses. Too much light,
too many sounds and too manypeople will guarantee agitation
for that person. So you justhave to remain sensitive to the
fact that those things, perhapsat one time in that person's
life, they loved it meant theyloved crowds and lots of food
(03:39):
and lots of things going on, butthat is sure to change with
dementia. Building in resttimes, there might be a place in
your home where the person withdementia can just take a break
from the fun chaos. So maybethere's a Barcalounger sitting
(04:00):
in a different room and justthat break can really help.
Photo albums, I found veryhelpful with my mom. It doesn't
have to be long, it doesn't haveto be thick and big, just grab a
few pictures, organize them, andat the bottom of the picture,
put the name of the person orpeople who are in the photo, and
(04:24):
that person with dementia cansit there and enjoy that photo
album. I found it extremelyhelpful. You just have to
redefine your concept of what isa successful event, and if you
found that there was some joyand some creative happiness that
(04:46):
happened during that time, thenconsider that a success. Okay,
Steve, talk about the importanceof routine over tradition.
Steve (04:57):
Yeah, this is a tough one, because I experienced a
little of both, and we- I'll getto that story in a second- but
routine can be as simple asgetting up in the morning and
going to the breakfast table,eating breakfast, putting the
dishes in the sink. This givesyour loved one a sense of
control. That's what it's reallyall about when you talk about
the importance of routine andwhen the routine gets off,
(05:20):
stress increases. Stressincreases for your loved one,
and also increases for you,because you feel that stress
from your loved one. So insteadof making the tradition a
priority, focus on the routineof the process. So, you know, if
you'd always had Christmasdinner or birthdays were always
at a certain time at dinner,maybe you switch it up to a time
(05:40):
that's better for them. I thinkthat's really critical. And also
be aware of sundowning is aproblem, especially when you
think about doing events laterin the day. So we talked a
little bit about this already,about too many people, and I
think this is also true here interms of having the whole
family. Somebody suggested,well, maybe you even break up a
party, you know, especiallyChristmas, you could have
(06:02):
something one day and somethingthe next day. Who cares whether
or not it's on the 25th and the26th or the 24th and the 25th?
If it's broken up and they canhandle it better that way,
that's a great idea. So try andmaintain familiarity, and this
will lead into my story, butsmells and candles and things
like that are valuable. Singingis wonderful. In terms of music,
(06:25):
even have some familiar music inthe background is always
comforting and calming. I thinkthat also my story is, don't try
and make everything maintainfamiliarity. In my case, my wife
was a Dickens village fanatic.
Patty had, I think, somethinglike 40 houses and all sorts of
different people. We woulddecorate every place we could
(06:47):
with these families. And so Irecreated all of her Dickens
families with the help of mydaughter. And she was living in
a community at the time, and webrought her home, and I was just
waiting for her to go, "Oh, lookat this and oh, look at that."
And it was all something shehadn't seen in such a long time.
She didn't remember it. In fact,it was a little intimidating,
(07:09):
because we tried one type ofscene and another type of scene.
So I think this is a goodexample. We've been fine if we
just had a few pieces outinstead of trying to do the
whole Megillah. I think that'sthe beauty of making sure that
you have some routine andrealize that their attention
span is a lot less than it wouldbe previously.
Virginia (07:28):
That is so interesting that she did not remember that
she used to do that.
Steve (07:33):
And I think this talks just a little bit about routine
versus tradition. One thing toremember if you're going out to
eat, remember that home isbetter than restaurant.
Virginia (07:43):
Agreed.
Steve (07:43):
You know, you might like the idea that it's going to
sound more special and there'llbe a cake or whatever it is, but
that's another totally differentenvironment that they're not
accustomed to, so routine ofdoing it at home will be easier
and much more enjoyable forthem.
Virginia (07:57):
My mom had a reaction in a restaurant one time. We
thought it was going to be justfine, and everybody was happy.
And probably 10 minutes into themeal, she said, "Well, it's time
to go."
Steve (08:09):
Yeah, my experience was we would have special birthday
dinners with friends, you know,and we'd have maybe eight people
at the dinner, and she couldn'tfollow the conversation, so she
would shut down. And you couldjust see how unhappy she was and
stressful, whereas if we justhad maybe two couples, it would
have been a lot easier for herto follow. So again, thinking
about making it smaller, makingit better is a really good idea.
(08:31):
Speaking about doing things withfriends, let's talk about
preparing guests in advance.
Virginia (08:37):
I look back and I think I should have done a
little bit more of this. Friendsand family can feel out of
control, just as much as theperson with dementia if they
didn't know what to expect andthey're witnessing someone who
doesn't recognize them. Theadvice here is to tell your
(08:57):
friends and family what toexpect for whatever stage your
loved one is in. Dementia is aprogressive brain damage. I
looked up the name of thisbecause I didn't know this, but
there's a part of the brain thatis responsible for facial
recognition, and it's calledfusiform gyrus, and that gets
(09:18):
damaged, and the person withdementia can sit there and
think, "I don't know thesepeople. I don't know who they
are." If you explain that toyour relatives and your family
and your friends who come tocelebrate that they may not get
recognized, that will hopefullyease the pain that they're going
(09:39):
to feel, or the rejection andthe hurt if their loved one
doesn't recognize them. Be sureto have people when they
approach your loved one repeattheir names. Either someone
standing there can say, "Oh,this is your cousin Alice. This
is your uncle, Bob." Thatrelieves a lot of tension for
(10:02):
the person with dementia rightoff the bat, because they don't
have to remember that person'sname.
Steve (10:07):
So even when other people arrive, like you said,
repeating, you could say, "Well,yeah, this is Alice," like
you're reintroducing them to thewhole group, but you're also
reintroducing them to your
Virginia (10:17):
Yes, I think that you will, if you look at the face of
the person with dementia, theywill have this look of relief
that, "Oh, I don't have toremember that name."
Steve (10:27):
Yeah. I often thought about name tags, but then again,
it takes some of thepersonalization off. But it's an
interesting idea.
Virginia (10:35):
I love name tags.
Steve (10:36):
Yeah, I remember how many times we're in a meeting and
we're going to a group setting.
And I know that person, but Ican't remember their name. It
happens to all of us.
Virginia (10:44):
And you don't want to get caught looking at their name
tag.
Steve (10:48):
No. Well, yeah, you can just glance.
Virginia (10:50):
Yeah, you got to learn how to glance.
Steve (10:51):
Oh, maybe that's an interesting idea.
Virginia (10:53):
I know it's true. I haven't really thought about
that, but honestly, who cares?
And it would just make thatperson feel so much better. All
of us have a tendency to say,"Oh, do you remember when we
-whatever fill in the blank- andthe person is not going to
remember, most likely, what thatwonderful event was, and they
(11:14):
are forced to kind of fake areaction. So generally, you tell
your guests, don't use the
phrase (11:23):
"Do you remember?" It would just alleviate all kinds
of difficulties if they rememberthat.
Steve (11:30):
You're kind of bringing up the issue that they're most
worried about.
Virginia (11:33):
That's right.
Steve (11:34):
By saying, "Do you remember?" "I don't remember.
That's why I have this problem."But yeah, I think that's really
great advice, because you canjust start by saying, "Hey, was
a lot of fun when we did this,this and this," and always
remember- sorry- that alwaysremember that their short term
memory isn't as good as theirlong term memory. So if you're
(11:55):
going to tell a story that youthink they might recall, you
could certainly tell somethingthat might be further away in
your relationship, rather thansomething that happened like
last week.
Virginia (12:03):
That is absolutely true. My mom grew up down the
street from Cornell Universityin Ithaca, New York, and they
rented the third floor tostudents, and mom could very
easily talk about the fact thatthey had to do the laundry for
those students, but she couldn'tremember my name.
Steve (12:21):
That's a perfect example.
I think that kind of making meanother comment about the value
of photo albums. If you want tohelp get your loved one in the
mood for a celebration, never abad idea to bring out a photo
album prior to it to get themthinking about how much fun it
was and how these people arethey care. And I think Virginia
made an excellent point. It'sgreat to look at pictures, but I
(12:42):
don't remember what the namesare, so make sure even the names
and where it was, especiallyolder situations.
Virginia (12:49):
Yeah, no, that's an excellent idea. Just those
little tips can kind of ease thesituation and actually make
everybody kind of have a wholelot more fun. If you give your
loved one something to do, andalso have the guests pitch in a
little bit that can help asituation. My mom used to like
(13:10):
to fold napkins. Setting thetable can be a little confusing,
but it wouldn't hurt for them tobe given things to put on the
table, just wherever, and thensomebody else can arrange the
silverware. But if they're givenlittle tasks, I think it can
help asking your guests to"Gosh, would you mind picking up
a pie, some contribution to thecelebration?" People like to
(13:35):
help.
Steve (13:36):
I think you're really touching on an important issue
there, especially for the lovedone. They want to be involved.
If they're involved, they'regoing to feel more valued. If
everything moves around them andthey have no role in any of it,
they're going to feel likethey're not really included.
Virginia (13:51):
It's true.
Steve (13:51):
And I think you really cover a point. It could be
simple things, even in some ofthe preparation of some of the
meals, because, least in Patty'scase, she had all of these
things written on cards. So evenif it was discussion that Casey
and she were having about makingsomething together, she could be
reading what was on the card andcontributing to the process for
(14:11):
Casey who was actually doing thecooking. So there's lots of ways
to keep feeling like they'revalued.
Virginia (14:17):
Absolutely, getting good at monitoring for signs of
fatigue or stress. I couldalways tell when mom was getting
stressed. She fidgeted a lot.
She fidgeted with herfingernails, and she never did
that before dementia. So littlethings. Just look at their face,
if their face looks like they'renot having a good time that
(14:39):
little break of going intoanother room or just having a
little rest somewhere else, canrefresh them, and they can be
ready to come back and enjoy thecelebration, taking a break if
needed.
Steve (14:57):
Especially if you're the primary caregiver, you're going
to have a greater sense ofwhat's going on with your loved
one in these situations. Irecall, as I said, being out
many times for a meal withfriends, even at their home. And
of course, they're assumingeverything is just natural. As
Virginia said, I don't think Idid a very good job of briefing
(15:18):
them, and we got there, andthey're carrying on a
conversation and a speed withwhich the conversation is
occurring. And Patty couldn'tkeep up, so she tuned out. So I
think that you have to thinkabout how you have to slow
things down, slow things downfor them and slow things down
for yourself. What's the rush?
It's not like we have to get itdone and we can cover less and
have more fun and make itsimple. I love your suggestion
(15:40):
about doing things while you'retogether that makes it fun, and
the more stuff you do that, evenif it's silly, stuff, like, you
know, blowing little tootors, orputting a hat on your head or
whatever it might be, make itfestive like that.
Virginia (15:55):
I know traditions you kind of want your celebration to
go like the successful onesalways have before. But for this
situation with someone withdementia, it's not going to be
the same, so you have to just gowith the flow.
Steve (16:12):
Yeah, and you know as it's going along, you can sense
that it's done. I think Virginiamade a really good idea about
taking a break to see if you canrecapture it, but sometimes
you'll see that your loved onejust isn't participating any
more, can't keep up or justshutting down. So a break
becomes purposeful. But let'ssay you planned on a dinner that
was going to be two or threehours together, and all of a
(16:34):
sudden it was apparent rightafter the meal that it was over.
It's okay. Yeah, and makeeverybody aware in terms of the
preparing, how she's doing, orhe's doing, and how they're
feeling. And the key is thatthey come away from this
experience in a positive way,rather than feeling like, "Oh my
gosh, this was just terrible."
Virginia (16:53):
Right, you want to look back and think we had a
joyful, successful celebration,and we just had to go with the
flow.
Steve (17:01):
Well, how does that relate to the person who's
actually doing the planning, andwhat do they have to worry
about?
Virginia (17:08):
I was going to ask you, Steve, I think you came up
with some good ideas onprioritizing self care.
Steve (17:14):
Well, I think self care is, you know, critical. You need
to make sure you are lessstressed going into these
arrangements, and if you'reexcited, you're anticipating
that it's going to be wonderfuland if you build your
expectations way up there andall of a sudden it doesn't
happen, the stress that you'regoing to feel,like the food
wasn't ready on time, or someoneshowed up late, all of these
(17:36):
things, you have to adapt and gowith the flow on these things.
And reducing your stress interms of getting prepared,
getting a good night's rest,making sure you're exercising.
You don't want to run into oneof these celebrations and be
exhausted. If you came off aflight and you're running into
something, you got to take timefor yourself. Of course, that
goes for any situation, really,but especially for a celebration
(17:57):
that you want to be special.
Virginia (17:58):
It's true. Just see if you can take a break and go take
a walk, either before or after.
That will help.
Steve (18:05):
I do this discussion about, how do you deal with
stressful situations while we'retalking about it, and I remember
learning a technique aboutliterally excusing yourself from
a conversation. Patty would beasking me questions for the
umpteenth time, and I would say,"Ah, excuse me, I need to go to
the bathroom." I didn't reallyneed to go to the bathroom, but
(18:26):
it gave me that mental break soI didn't get upset or angry
about the fact that she wasdoing it. Those are the kind of
things that you can do thatreally help.
Virginia (18:34):
Yes, good advice.
Well, Steve, what do you think,did we forget anything?
Steve (18:40):
You know, I think one thing we could talk a little bit
about is not being fearful aboutthese celebrations and how
meaningful they can be for yourloved one, as well as your-
especially your intimatefamily,- as long as you don't
set expectations way too high,it's an opportunity. And in
Patty's case, she was in acommunity, and I brought her
(19:02):
home, thinking this was going tobe just like all the Christmases
we'd had. So my expectationswere sky high, and it was a
disappointment. And actually, itworked out pretty good when I
reflected on it, but I expectedlike I said, she was going to
recognize all the work we'd putin and how excited she was, and
that were all her favoritemeals. Really, it was a good
(19:25):
time together, and that's allthat really mattered. So kind of
realize that it can't beeverything that you used to
have. It can be, as we said,routines are more important.
Virginia (19:34):
That's right, very good. Well?
Steve (19:36):
Well, let's just kind of wrap up by saying thank you,
Virginia. She put a lot of workinto all these questions, as
usual, and you know, it's agreat time in the year. And just
look forward to taking advantageof it, enjoying it. And we hope
you'll tune in for futurepodcasts. We always look forward
to that. And if you have anytips that you'd like to send to
us about topics we should cover,we'd love that.
Virginia (19:58):
Love that. Thank you very much.
Steve (20:00):
You're welcome. Thank you.
Spotlight on Care is produced bythe University of California,
Irvine, Institute on MemoryImpairments and Neurological
Disorders, UCI MIND. Interviewsfocus on personal caregiving
journeys and may not representthe views of UCI MIND.
Individuals concerned aboutcognitive disorders, prevention,
(20:20):
or treatment should seek expertdiagnosis and care. Please
subscribe to the Spotlight onCare podcast. Wherever you
listen for more information,visit mind.uci.edu.
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