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Bill In Congress Could ‘Alleviate Burdens On Caregivers’

Millions of families nationwide find themselves caring for loved ones in their own family. Sen. Shelley Moore Capito experienced those issues as she provided care for her own parents. She recently introduced legislation into the U.S. Senate to help alleviate burdens on caregivers.

Millions of families nationwide find themselves caring for loved ones in their own family. That includes stress and confusion — especially when it comes to dealing with a parent’s finances and the services that are available to them.

U.S. Sen. Shelley Moore Capito, R-W.Va., experienced those issues as she provided care for her own parents. She recently introduced legislation into the U.S. Senate to help alleviate burdens on caregivers.

For his series, “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas discussed the situation and the pending legislation with Capito.

The transcript below has been lightly edited for clarity.

Douglas: We’ve both cared for our parents. Let’s just talk about that experience for a second. So you cared for both of your parents, right? I believe I read that it was your mother first. And then your father began to decline? Or do I have that backwards?

Capito: That’s right. My mother really had a longer slope into full out dementia. She became very isolated, worried about losing her mind. It was sad to watch, but dad could kind of compensate and help her and answer the questions time and time again. And then when he slipped, he went much faster. That was in 2010.

Then it began a long slog for me and my brother and sister to have four years of caring for them, having them being cared for, and trying to figure all this out. It began slow, and then it just all of a sudden, almost one day, we’ve got real issues here.

I think that’s what happens in families, when it’s a couple one can kind of compensate or cover up for the other. And then when that person, when your healthy person goes down, you realize all the things that maybe you should have been paying a little bit more attention to.

Douglas: I asked the question because your father was the caregiver for your mother and did all of those things that we’re discussing. And then when he began to decline, then suddenly it fell to the next generation, to our generation, to step up and to provide that care.

Capito: It was challenging for us in that none of the three of us lived right there. You can always go back and look, and I’m sure you’ve done this yourself, could I have addressed this earlier, sooner or better? But you’re doing the best you can. And I think that’s what caregivers all across this nation are doing.

Douglas: Yeah, I’ve certainly gone in my head. Should have done this? Should have changed this sooner?

I’ll be honest with you, when I see information about newly introduced legislation, I generally don’t pay a whole lot of attention to it. I know how many steps it takes to become finished legislation. But tell me about this bill to alleviate the care or the burden on caregivers.

Capito: I think what I realized from my own personal experience, and then once I became sort of known as somebody who has lived this experience, is that going through all the insurance, every time they were admitted to the hospital, you have to get another document to sign, you signed the same document every time, why can’t the X-rays, or the testing be transmitted from one hospital to the next?

You have the burden of trying to figure out how to care best for your parents, but then all of the hurdles that you have to jump through, whether it’s for insurance purposes, or HIPAA, or the refrigerator breaks down, all of these things just come cascading down. And you end up with a lot of difficulties in terms of trying to figure out procedures, forms, communications, eligibility, whether you’re talking about Medicare or Social Security.

I think we could make it easier on caregivers who are trying to face this, to make it more streamlined, or at least have these agencies look at how they could streamline their processes to make it easier.

Douglas: That was one of the things that I struggled with, who do I go to to find out how to care for my mom? It’s very frustrating.

Capito: You are looking at financial data, too. That’s another thing. I mean, that’s different than what this act for caregivers or alleviating barriers for caregivers would do, but financial institutions, I think could help you a lot more in terms of trying to figure out credit card and bank accounts, so that not only do you have, “How am I going to get the health care? How am I going to pay for this?” And if they can’t communicate to you successfully, where is everything? I don’t know about you, but I spent a lot of time trying to unwind and figure out how to do all this.

It was a labor of love for me, but it was extremely time consuming and emotionally draining. And then you’re trying to have your life at the same time. My parents actually got very, very ill in 2014, which was the year I was running my first Senate race, and I’m like, wow, what am I going to do? Finally my mother, in the memory unit, in September of 2014, when my campaign obviously was almost over in November, my mother died.

I remember a campaign meeting that I had the day before she died. And I just looked at my campaign team, and I said, “I can’t do all this. My mother is dying.” I had no idea she was gonna die the next day, but I could see. And I really think my mother was looking in my eyes going, “She’s really tired. I might as well just hang it up. She needs a break.”

Pictured here with her father, the late-Gov. Arch Moore, in 1962. Shelley Moore Capito was one of her father and mother’s caregivers as they struggled with memory loss later in the life.

*Photo courtesy of the West Virginia & Regional History Center/WVU Libraries*

Douglas: You were in the U.S. House leading up to that, too. You had a full schedule going on with them and living in D.C., or at least commuting back and forth.

A lot of caregivers, just generally speaking, have moved away, we’ve moved all over the country. Families aren’t located within 10 miles of each other anymore. Who do you call? Who do you rely on?

Capito: I have an older brother and a younger sister. They were very helpful, but at the end of the day, one person ends up making those decisions, and that person was me.

Douglas: Why has the system grown to to be such a challenge for caregivers?

Capito: I think a lot of it has to do with people living longer. It’s not all about dementia, it could be broken hips or heart failure, whatever. I think people are living longer. And so I think that presents a challenge because, are they living healthy all the way to the day they die? Of course not. And so I think that’s a challenge. I think our society is much more mobile, as we said, so many people have moved away from home. We have families that maybe 30, 40 years ago, maybe the wife wasn’t working, but we have many more women in the workforce, dual occupation couples.

My mother’s mother had the same issue in the ’60s and ’70s. Once it was unmanageable at home, she went into a nursing home for like eight years. We don’t do that anymore. And because that’s not the modality that’s really the best treatment for certain types of things. I think that’s got some impact on it. And the cost of caring.

If you can’t quit your job and move across the country, which a lot of people do, it becomes very, very hard and you look at the cost and you say to yourself, it’s probably the least costly way to do it. And the best I’m going to feel about is if I just drop out of the workforce for right now and manage this. So I think it’s all kinds of factors like that.

Douglas: Nationwide, there’s 53 million family caregivers, but even in West Virginia, we’re looking at a quarter of a million people in a state of 1.8 million people. That’s kind of astounding. That’s one-in-eight, one-in-seven people in the state is a family caregiver for another 100,000 people who need the care.

Capito: That’s where something like the Credit for Caregiving Act, which is another one we put out, and it’s been out there for a couple years, to try to give some financial relief in the form of a tax credit for family caregivers. You try to attack it that way a little bit to maybe ease the burden. The nice thing about this issue, which is not too nice, but it’s totally bipartisan, and because this has no barriers in terms of how it hits people in terms of their politics, obviously. It’s one of the issues that we can work on together. I’m a big believer in medical research and development of new therapies and earlier treatment and earlier diagnosis.

So all of these things kind of drive me because of my personal experience, not that I hadn’t seen it in other families but until you hit it yourself, you really don’t understand what’s going on. And so that’s why I’ve sort of taken this on as one of my causes that I think we could make a difference on.

Douglas: Any prognostication on the possibility of this, this moving on through and out of committee and onto the floor?

Capito: This is national Family Caregivers Month, so it’s a good month to be talking about it. The bill probably doesn’t have a burden, but we’ll need to attach it onto another bill going through the Health Committee. We’re looking for those opportunities and it has bipartisan co-sponsorships. We’ve just put it out there. So we’ll see what happens. We’ve been trying to look for what we say is a vehicle to get it passed.

Fur Trapping In W.Va. And A Blue Ribbon Winner, Inside Appalachia

This week on Inside Appalachia, we visit with West Virginia trappers to learn about the fur trade in the 21st Century. We also meet a county fair champion who keeps racking up the blue ribbons and has released a cookbook of some of her favorites. And we hear an update on the Mountain Valley Pipeline. Construction has begun again, but some people wonder if it’s even needed.

This week, we visit with West Virginia trappers to learn about the fur trade in the 21st century.

We also meet a county fair champion who keeps racking up the blue ribbons and has released a cookbook of some of her favorites.

And we hear an update on the Mountain Valley Pipeline. Construction has begun again, but some people wonder if it’s even needed.

These stories and more this week, Inside Appalachia.

In This Episode:

The West Virginia Fur Trade In The 21st Century
Blue Ribbon-Winning Fair Food
Cruising With Vintage Vehicles
The Mountain Valley Pipeline Saga Continues
Extended Family Pitching In To Care For Dementia Patients

The West Virginia Fur Trade In The 21st Century

Before coal or timber, the fur trade was one of Appalachia’s first industries.

Fur trapping flourished for centuries, made fortunes and led to wars and was still lucrative into the last few generations.

Now, most West Virginia fur trappers struggle to earn a living, but some have adapted or found new careers using their particular skills. Folkways Reporter Lauren Griffin brought us the story.

Blue Ribbon-Winning Fair Food

There’s nothing quite like the county fair, where you can pet a goat or get motion sick on the tilt-a-whirl.

A staple of county and state fairs are the annual craft competitions, where the hopeful vie for the coveted blue ribbon.

Few people have been as successful as Russell County, Virginia resident Linda Skeens, who has won hundreds of ribbons, become a social media sensation and released a cookbook featuring some of her winning recipes.

Producer Bill Lynch spoke with her about winning contests and collecting recipes.

Cruising With Vintage Vehicles

For over 50 years, in Roanoke, Virginia, on any given Friday night, you can see modified cars and trucks with neon lights, spinning rims and streamlined spoilers strutting from north to south and back again. And often — you’ll see old timey antique cars out there among them.

Host Mason Adams reported this story in 2020, about a family of mechanics who have spent years developing the skills to get those vintage cars just right.

The Mountain Valley Pipeline Saga Continues

We’ve reported on the Mountain Valley Pipeline for years. Completion of the pipeline has been held up because a federal court keeps throwing out its permits. The U.S. Supreme Court recently ruled to allow work to resume again. But some energy analysts question whether the pipeline is even needed.

WVPB’s Curtis Tate spoke with Suzanne Mattei of the Institute for Energy Economics and Financial Analysis.

Extended Family Pitching In To Care For Dementia Patients

Spouses or adult children typically care for people with dementia, but more and more extended family members are taking on that role. CareEx is a project at the Center for Gerontology at Virginia Tech that studies extended family caregivers in central Appalachia.

WVPB’s Eric Douglas spoke with project coordinator Brandy McCann about their work.

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Our theme music is by Matt Jackfert. Other music this week was provided by the Carolina Chocolate Drops, Sturgill Simpson, Ron Mullennex, Mary Hott and Noam Pikelny.

Bill Lynch is our producer. Zander Aloi is our associate producer. Our executive producer is Eric Douglas. Kelley Libby is our editor. Our audio mixer is Patrick Stephens.

You can send us an email: InsideAppalachia@wvpublic.org.

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Inside Appalachia is a production of West Virginia Public Broadcasting.

Research Project Examines Extended Family Dementia Caregiving

A group at the Center for Gerontology at Virginia Tech is researching extended family members who become dementia caregivers throughout central Appalachia. They want to understand how these caregivers moved into that role.

Caregiving for family members with dementia can be difficult and stressful. For many of those caregivers, it progresses from helping out a little bit to sometimes becoming a full-time job.

Now, a group at the Center for Gerontology at Virginia Tech is researching extended family members who become dementia caregivers throughout central Appalachia. They want to understand how these caregivers moved into that role.

For his series “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas speaks with Project Coordinator Brandy McCann, to find out what they are looking for.

This interview has been lightly edited for clarity.

Douglas: You’re researching caregivers, family, familial caregivers for people with dementia?

McCann: That’s right. This study is focused specifically on extended family caregivers. I will just tell you quickly about how we came to be studying extended family. So the primary investigators for this study were doing a study based in Appalachian Virginia on service use and dementia caregiving. They noticed that about 10 to 15 percent of the sample was extended family caregivers. When we say that, we mean siblings who are helping out, grandchildren, nieces and nephews and just other extended family caregivers, because typically it’s an adult child or a spouse who is in that primary caregiving role.

Douglas: For what it’s worth, I’m in that role. My mother has middle stage dementia, and I’ve been dealing with that for the last several years. But you’re not talking about me caring for my mother, you’re talking about the rest of the family, the aunts and the siblings.

McCann: They’re often classified as “others” in research. How did these other family members get to be in this caregiving role? In that study, they were in a primary caregiving role as the first contact. So, now we’re doing this larger study. We started out in Virginia and now we’re interviewing people in North Carolina and Maryland, West Virginia, and the broader region, all the surrounding states of Virginia. We wanted to understand more about how these extended family caregivers came to be in that role, their family histories, what challenges they might face, in terms of service use, because we are very interested in understanding barriers to service use the families may face.

Douglas: What have you found so far?

McCann: We know there are larger demographic changes in the country and in the region. In family science, we used to talk about families as being shaped like a pyramid. There were maybe one or two older adults at the top, middle generation, a few more and then a lot of younger generation. You had this large circle of younger people to care for an older person. And now we see in family demography that there are fewer of those younger generations to care for an older adult. And so they talk about moving from a pyramid structure to a beanpole structure. There might be one niece, for example, who’s caring for not only her mother, but her aunts as well. We also see divorce and re-partnering across the lifespan, greater numbers of that. So maybe now stepchildren can be involved in the care of a person who’s having memory loss or dementia.

Douglas: I wonder too, if the kids have moved away, and now the kids are four states away, so it falls to somebody else to take care of grandma?

McCann: Absolutely, absolutely. And we see that maybe there’s a sibling who’s doing the day to day checking in, that kind of thing, and making sure that the person can still stay in their home. And maybe the adult child is the power of attorney, but they’re out of state and they’re maybe making some decisions, but they’re sharing the work of caregiving, so to speak.

Douglas: What’s the scale of this? Are we talking 30 percent of seniors in this category, 50 percent? Do you have any grasp?

McCann: That’s one of the things that we’re finding, even measuring the numbers of those extended family caregivers who are involved can be tricky, because it depends on how you define caregiving. Some people, it’s very clear, there’s one person involved; that’s typically an adult child or spouse, and they’re doing 90 percent of the stuff. But in other situations, you might have a whole family involved, it might be several adult children, maybe a spouse, grandchildren, especially I think of in rural areas, or an Appalachian region, where you may have family land, and where there are multiple families living on the same property. There’s all kinds of people helping this person stay in their home, maintain their lifestyle, as they had it before they started having cognitive decline. In that situation, there may be multiple people who are doing caregiving in that family so it gets a little bit harder to measure.

Douglas: I hadn’t thought about that kind of rural community where everybody lives up the same holler, so they check on mom.

McCann: That’s one of the challenges that we’re finding in terms of finding participants is that sometimes the grandchildren, for example, don’t think of themselves as caregivers. They might be going to Granny’s house every day. As a researcher, we would consider care work, going over there and helping her read the recipes to do family dinners, and maintaining those kind of family traditions. And that person can be going over there every day, doing all this really important work, but they don’t think of themselves as a caregiver. They’re just helping Granny.

Douglas: I wonder if those people think of caregiving as the more – nursing, physical, hands-on, feeding type behaviors versus just hanging out and being with them and making sure they take their meds and that kind of stuff.

McCann: That is such an important issue. I think people underestimate how important that is, and that’s why it can be hard when people do kind of reach a breaking point, and they realize they need help, it can be really hard to find somebody, because I think it’s hard to describe what exactly it is that they’re looking for.

We just published an article on caregiver vigilance, and when we asked caregivers how many hours a day do you feel like you need to be on duty for your relative who’s having memory problems? So often people say, 24/7, even if they’re only doing like three to four hours of actual stuff, that feeling of being constantly vigilant, providing that high quality level of care and attention to someone who’s experiencing cognitive decline is very, very important. That’s kind of the crux of the issue in terms of finding appropriate services and that kind of thing.

Douglas: Tell me about the research you’re doing. What do you need from somebody to participate?

McCann: We’re asking that people be an extended family caregiver. So that would, again, be siblings, grandchildren, nieces and nephews, or any step and that they see the person three times a week and are involved in their care. So after they meet the inclusion criteria, then we do one longer interview that usually takes about an hour and a half on the telephone.

In that interview, we would ask them a little bit about their family history, we have some open-ended questions. And then we just kind of ask some standard caregiver questions about how stressed they feel, that kind of thing. And then we do eight daily diaries after that. So for eight evenings in a row, we call in, and those take about 10 to 15 minutes, and we just asked about the help they provided that day. It’s nine days total. We do compensate people for their time. So if they do all nine days, we send a $110 gift card to them, and also resources for whatever state.

In West Virginia, there’s the FAIR program that provides respite services for family caregivers of people with dementia. If somebody has a particular issue with getting their relative in the shower, which is a common thing, we might send tip sheets from the Alzheimer’s Association about that particular issue.

Douglas: What’s your end goal for this research?

McCann: The goal is twofold. First of all, it is to understand how these demographic changes that I mentioned earlier, such as divorce and re-partnering, families becoming smaller in the younger generations and movement, even in the Appalachian region, people may still move just within the region, but they’re still farther away. So we want to understand how these larger demographic changes are impacting families in caregiving situations.

The second one is focused on this service use. How we can help families overcome barriers to service use. Is it financial? Is it the person who has dementia doesn’t want services? That’s very tricky to handle. Just helping understand what barriers these families might be experiencing so we can provide better support to families. Because we know that families need more support.

To participate in this study at Virginia Tech, call 540-231-9250, send an email to carex@vt.edu, or visit their website and fill out the online form.

Dementia Caregivers In Appalachia On This West Virginia Morning

On this West Virginia Morning, we learn about a group at the Center for Gerontology at Virginia Tech that is researching extended family members who become dementia caregivers throughout central Appalachia. They want to understand how those caregivers moved into that role.

On this West Virginia Morning, a group at the Center for Gerontology at Virginia Tech is researching extended family members who become dementia caregivers throughout central Appalachia. They want to understand how those caregivers moved into that role.

For his series “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas talks with Project Coordinator Brandy McCann to find out what they are looking for.

Also, in this show, The Allegheny Front, based in Pittsburgh, is a public radio program that reports on environmental issues in the region. We listen to their latest story.

West Virginia Morning is a production of West Virginia Public Broadcasting which is solely responsible for its content.

Support for our news bureaus comes from Concord University and Shepherd University.

Eric Douglas is our news director. Caroline MacGregor is our assistant news director and producer.

Teresa Wills is our host.

Listen to West Virginia Morning weekdays at 7:43 a.m. on WVPB Radio or subscribe to the podcast and never miss an episode. #WVMorning

When It’s Time To Find A Nursing Home For A Loved One

Many families have to move a loved one into a nursing home because of dementia. The experience often comes with grief and loss and a sense of failure.

For his series Getting Into Their Reality: Caring For Aging Parents, News Director Eric Douglas visited a nursing home in Marmet, West Virginia with a memory care program for people with dementia to discuss the process.

He spoke with Julia Smythe, the dementia program director, and Natalie Petty, the director of admissions and marketing.

The transcript below has been lightly edited for clarity.

Douglas: People only put their family member in a nursing home for the first time once it’s an overwhelming feeling of, “Oh my God, what’s going on? I don’t understand any of this.” There’s a lot of fear. There’s a lot of confusion. And I can speak to that personally. So talk to me about what that’s like. What’s the admission process? What do you do when somebody comes and says, “My mom has dementia. I don’t know how to deal with this, what do I need to do?”

Smythe: What we do is we provide support through resources through the Alzheimer’s Association for caregivers. What I always do is I send out a packet to the family member that includes caregiver stress, how to care for yourself while you’re caring for others, and grieving because during the process of dementia, you don’t grieve once, you grieve several times, because you grieve the loss of each stage.

That’s a very real experience that all family members I talked to experience. So when they’re admitted here, what we do is we have a meeting with the family and we discuss what it’s going to be like living here for their family member. And we include the family members and all activities that they would like, too. They can come in freely and join in on activities and mealtime. You can join in on meals here, too. It’s supposed to be a home-like environment.

When I’m talking with family members about placement, what I usually stress is, it’s the safety of your loved one. That’s what we’re most concerned about. Because when it comes to the placement, most people are at the point where their family member is trying to elope from their home, because they don’t feel safe. They keep saying that they want to go home even though they’re already home. And that’s all because they don’t feel comfortable in their own body.

Our job is to create that comfort through the programming. So that’s really what I talk to family members about to try to ease them. And of course, when they’re here, I encourage them to visit as much as they want unless it causes some behaviors, because it can for some people with dementia, if they think you’re not the person you are. We monitor those things to try to work with family members to see what the best visitation schedule would be for them and how we can use our tools that we do in the beginning.

Petty: When it comes to the financial issues, that is also very overwhelming. So I will also meet with families, tell them where to start, how to start the Medicaid process if needed. We even have some girls in our office that can help walk you through that application and get that submitted. So we help with the steps to that as well.

Douglas: Let’s talk about the admissions process a little bit more.

Petty: Depending on where the family member is, if they’re at home, I usually start with the family. And like we talked about earlier, we bring the family and we talk about what their needs are.

Douglas: Let me back up and ask one question. Do you need a doctor’s referral?

Petty: Yes. That’s usually where I have everybody start, especially if they’re from home, I have them start with their doctor, have them get an appointment with them, let them know what situation they have at home. There is a pre-admission screening form that has to be filled out by the doctor. And we need a little bit of clinical information from that doctor’s visit, we can get that submitted for approval.

And then we start looking at their payer sources, if they have insurance, what type of insurance they have, if they need Medicaid, we start working on that and get everybody started with that process. And then after that, you’re on the referral list. And so it’s just a matter of when we have an open bed. And when all the paperwork gets approved. Once we do that, then we usually contact the family and we set up a time for them to admit their family member.

If it’s from the hospital, a lot of times that works a lot faster than home. It’s a process when they’re at home. But the hospital’s able to bypass your family physician. They have doctors that can fill out that form and they have access to all the clinicals when the patient’s in the hospital so and we have liaisons at the hospital that can come in and assess the patient when need be. So all of that can be fast-tracked through the hospital.

Smythe: I also assess patients in the hospital and at home and other facilities. So I can go into the home as well upon request or they can come and bring their loved one to the memory unit to see how they do interacting with other residents. We’ve done that before, too.

Dementia Experience

The memory care staff also sets up a community activity to allow family members or members of the community to come in and experience what it’s like to have dementia, including the physical and perceptual challenges.

https://wvpublic.org/wp-content/uploads/2023/06/06XX-Dementia-experience-1.mp3

Listen above to Julia Smythe explain the dementia experience in this bonus audio content.

The transcript below is from the dementia experience.

Douglas: Tell me what you’re doing here today.

Smythe: We are running a dementia experience. We dull your senses to the point that someone with dementia would be feeling. We want you to try and to take on everyday tasks with your senses dulled to see how difficult it is to do your activities of daily living. What we do is we put gloves on you, we put little earplugs in your ears, we put a hat over your head, we put prescription glasses on, and then sunglasses over those. The reason for that is when somebody has dementia or Alzheimer’s, their vision is greatly affected. They usually have tunnel vision, their peripheral is very dark. That’s what causes a lot of falls and mobility issues. We also put rice in your shoes. And so the rice in the shoes is to show you how off balance somebody is when they are not able to feel their extremities the way they used to. You can see the shuffled gait or the high risk of falls with the rice in the shoes.

What we do is we have you put all of those things on, and then you have to attempt to get dressed and put a piece of jewelry on. And then we move to the second station. That’s our office station where we have you read these bills here. And then we will have you fill out these checks. And we want to see if you can match the amount with the correct amount on the form here. Running this experience, we’ve seen that with all of the gear on, it’s extremely difficult to find these lines. It’s extremely difficult to write the same way that you normally would. Your handwriting is not as legible.

That’s actually one of the things that I noticed about my grandmother when she first started getting sick. She used to write scripture all day, and I noticed that her handwriting was getting worse. And then that’s when all of the cognitive issues started and she started being looked at for dementia.

It’s little things like that when you notice trouble with finances and then the inability to write or verbalize things the way that you used to.

Then we have our assorted folding station. As you can see, it’s a jumbled mess. You have to attempt to fold the scarves that we have here. And then you have to match all of the socks. And then you take all of the utensils here, and you have to separate them into our utensil bin here. So this is a very difficult station here because you can’t feel your fingers too well. And it feels like you have really big hands.

Our last station over here is pill sorting. Because of the gloves you can’t feel where the pills are.

Members of the community interested in going through the dementia experience can call the Genesis Marmet Center to schedule an appointment.

When Mom Has Dementia, How To Celebrate Mother’s Day

Mother’s Day is not always a happy day for everyone — like when mom has dementia and is forgetting the family she raised.

Mother’s Day is not always a happy day for everyone — like when mom has dementia and is forgetting the family she raised. News Director Eric Douglas is facing this situation himself.

For his ongoing series Getting Into Their Reality: Caring For Aging Parents, he spoke with Chris Schneider, the director of communications for the Alzheimer’s Foundation of America, about how to celebrate Mother’s Day when mom has dementia.

This interview has been lightly edited for clarity.

Douglas: Obviously, this weekend is Mother’s Day. It’s a joyous time, it’s a wonderful time to celebrate our mothers. Unfortunately, it’s difficult for a lot of people as well. My own mother has dementia and is in a nursing home now. So I’m dealing with this myself. So let’s talk just a little bit about how to handle celebrations like this with a person who has dementia. How do you cope? How do you handle it?

Schneider: Well, as you mentioned, it can be challenging just because of the nature of the illness in the way dementia affects the person living with it, but also the way those it affects their loved ones. But one of the biggest things that people can do is just adapt the celebration and being adaptable and flexible are two of the most important traits for any caregiver. And what Mother’s Day is really about is honoring the special mother figures in your life and celebrating the bond between you. And while dementia may change how that’s done, it doesn’t change the bond. So, it’s important that if you’re celebrating with a loved one with Alzheimer’s disease, just adapt that celebration, but remember, it’s about the love you share with your loved one.

Douglas: You’re gonna tell me probably keep things a little lower key. Don’t have too high of expectations, but what are some of the things somebody can do to adapt their celebrations?

Schneider: You want to try to adapt old favorites. And just as you mentioned, somebody living with dementia may not be able to do things exactly as they did before the onset of dementia. So, an example is if every Mother’s Day you went out to your mom’s favorite restaurant, and now she’s not able to go out to the restaurant or doesn’t feel comfortable going out in public, or maybe crowds cause anxiety or fear or other emotions like that. Order in food from that establishment.

If large crowds make her uncomfortable, make the gathering a little smaller, but still spend that time together and still celebrate her and show her that you care and show her how much you appreciate. And it’s just those little adaptations. If the person enjoyed playing a musical instrument, maybe listen to music with them together, listen to their favorite songs. There are ways to adapt things to keep the spirit of the celebration there and incorporate what your loved one likes to do and favorite things but do it in a way that makes them feel comfortable.

Douglas: This happened a couple years ago before I realized exactly what was happening, but my mom was always big into baking and loved baking cookies. She glanced at a recipe, I think to pretend as much as anything else, to be able to bake all this stuff. And not long ago we had my daughter’s up, and had her up, and we were going to bake cookies. I asked her to start something and I could tell it wasn’t going to go well so I quickly jumped back in and took over and had her do some decorating or whatever with my daughters. That was well before the diagnosis but I think that was a signal for me that we have to have to look at this a little differently.

Schneider: But you found a way to adapt, which is a good thing. You know if she can’t bake exactly as she did before, but she can help with certain ingredients, or help with part of the process, you’re still involving her in something that she used to do and likes to do. You’re letting her experience that sense of purpose and accomplishment. But you’re doing it in a way that makes her comfortable. And that’s really one of the biggest things you can do in terms of making an adaptation. And not only that, it helps create new memories, so you’re focusing on what she can still do what she’s able to do, and what she chooses to do now, not necessarily dwelling on what she is no longer able to do. And those are two good things as well.

I once heard that the most valuable commodity is time, because you can’t make any more of it. It’s a finite resource. So, spending time with your mom and spending that quality time together doing things that again, she likes to do now, and is able to do now that’s really one of the most important things you can do to creating those new memories together and bring her joy in a way that she’s able to experience. That’s better than any gift she can receive.

Douglas: I was thinking possibly something I would maybe put in the “Don’t do” category is sometimes they try to put too much pressure, whether showing pictures or just trying to remember when we did this, and I think that’s a way to get everybody upset. But are there any other things that you would say do not do?

Schneider: I think you hit the nail right on the head with that one. Reminiscing is a great form of therapy. Familiar faces and old photos can bring joy and comfort to someone living with dementia. Even if they don’t remember the names of the people, they may still remember the time or they may remember the face. Or they may remember even that, even if they don’t remember who it is, they may just know, “Hey, this is someone special.” So, looking at old photos together is a great thing to do on Mother’s Day.

But as you mentioned, you don’t want to ask, “Don’t you remember when we took this trip? Don’t you remember who that is?” Because they may not you know — it’s a memory disorder. So you don’t want them to feel pressured or embarrassed or ashamed. As you’re looking at the photos together, describe for them as you’re going through them who the people are, who the occasion was, “Hey, Mom, this is me and you and your daughter, and this was when we took that vacation to Florida together. It was such a great time.” Do it like that. So you’re giving them the information and allowing them to experience the reminiscence but you’re not putting the pressure on them. You don’t want to do that.