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Listen: What Alzheimer’s Means For Caregivers

For the second interview in our series “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas spoke with Teresa Morris, the program director for the West Virginia chapter of the Alzheimer's Association. They discussed what Alzheimer’s disease is and what it means for the caregiver.

For the second interview in our series “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas spoke with Teresa Morris, the program director for the West Virginia chapter of the Alzheimer’s Association. They discussed what Alzheimer’s disease is and what it means for the caregiver.

This interview has been lightly edited for clarity.

Douglas: Explain to me what we’re talking about. Explain to me what Alzheimer’s and dementia are. They are separate but they’re effectively the same thing.

Teresa Morris, the program director for the West Virginia chapter of the Alzheimer’s Association.

Morris: We typically describe dementia as a collection of symptoms that affect a person’s ability to function independently. Now, those symptoms or those traits can be memory loss, issues with reasoning, issues with sequencing, language deficits, the list goes on and on. But basically, it’s describing those symptoms as a result of brain changes that happen in an individual. Alzheimer’s is a type of dementia. So we have about 12 or 13 different types of dementia. So we have Alzheimer’s disease, there’s a Frontotemporal dementia, there’s a vascular dementia, Lewy body dementia, a Parkinson’s dementia. Those are characterized by different types of changes in the brain.

Douglas: And I guess the location in the brain is going to affect the problems they’ll have.

Morris: Exactly. Most all dementias are going to have memory loss, they’re going to have issues with recall, they’re going to have issues with language, but they can be characterized a little bit different. There might be more behaviors with someone that has a Frontotemporal dementia, there might be personality changes, there might be more aggression, maybe, with another type of dementia.

Douglas: Let’s discuss the challenges of being a caregiver for somebody.

Morris: A caregiver of someone with dementia, they deal with, obviously, the mental decline of the person that they’re caring for. The caregiver, often they experience grief, they’re going to mourn what they expected their parents or loved one’s end of life to be like, and it’s very, very different. The fact of it is, someone with dementia is going to require 24 hour care, eventually. All of the things that make someone independent are going to be lost. And so a caregiver will be charged with medication management, meals, safety within the home, financial considerations, you name it. Whatever you take care of in your own home, you’re going to have to take care of in your loved one’s home and that often comes with consideration for residential care or additional care in the home. And then that turns into financial considerations.

Medicare does not pay for caregiving, per se. So then you have to look at private pay for care in the home, or if you look at an assisted living or personal care unit, that’s still private pay. And then sometimes folks might need to qualify for Medicaid. And so then there’s the challenge of going through that process of selling maybe the home, or the land and all the possessions to be able to provide the care that someone with dementia.

Douglas: What are the support groups for? What would I gain from being involved with one of those groups?

Morris: Our support groups meet once a month. We try to keep them to about an hour in length, because people are busy. A lot of caregivers have jobs, so they can’t really be gone. Or if they’re a 24/7 caregiver, they can’t leave the person with disease for more than an hour.

I think you gain camaraderie. The people in those groups are absolutely going through what you’re going through. Maybe I haven’t been in your shoes, but the people, the members of our support groups, are walking it. They’ve lived it.

Douglas: How does somebody get involved? Where do they start?

Morris: If you’re interested in a support group, the best thing to do is to call our chapter office. That number is 304-343-2717. And you just tell us where you are. We’ll try to plug you into a support group that is local to your community. COVID did teach us that support groups are still effective, even if you’re not in person.

Douglas: I feel like we’ve got covered a lot but what haven’t we talked about?

Morris: One of the things was some tips for coping with caregiving. I always say a healthy caregiver is a good caregiver and an exhausted and sick caregiver is not so much. You have to really try to find time to manage your own stress and to try to take care of yourself. You have to go to your own doctor’s appointments. If you’re down, you’re never going to be able to take care of the person with the disease adequately. Be realistic about what you can and can’t do. I often see people who will say, what I told my mom, I’m never going to put them in a nursing home or a long term care facility. While that is a very valiant statement, there might come a time where that’s the best thing for you and for your loved one. And that’s okay. That’s what they’re there for.

You have to give yourself a break. You can’t jeopardize your health and your well being to take care of an individual. I always tell folks, whatever you’re doing, you’re doing your best. It’s okay. You’ve got to give yourself a break. Especially if you’re working and if you have your own family. You just have to know that you’re doing the very best that you can.

And it’s okay to ask for help. Your mom has cancer, and you tell your friends, you tell your church, and you’re gonna get casseroles for weeks, you’re gonna get cards, you’re gonna have people stop by, you’re going to be taken care of. But oftentimes, when you tell your friends, you tell your church group, whatever, my dad has Alzheimer’s, people don’t know what to say. They don’t know what to do, they often withdraw.

I believe we have to increase awareness of the disease so that our friends and neighbors and extended family become better at dealing with or helping someone who’s a caregiver.

What’s Happening When Someone Has Dementia?

Many West Virginia adults find themselves in the difficult position of caring for their children and looking after their parents at the same time. Conditions like dementia and Alzheimer’s disease are problems, but so are mobility and safety issues at home. It can be stress-inducing and make many people wonder if there is any help available and where to get it.

News Director Eric Douglas has found himself in the same position and wondered the same things. This is the first installment in a new interview series titled “Getting Into Their Reality: Caring For Aging Parents.” We’ll talk with experts about what people need to know as they get older, or when helping aging parents.

Dr. Lynne Goebel is a professor of internal medicine and geriatrics at Marshall University. She works at the Hanshaw Geriatric Center. She spoke with Douglas to explain what is going on inside the brain.

This interview has been lightly edited for clarity.

Douglas: Help me understand what’s going on in somebody’s mind or what’s happening in Alzheimer’s and dementia.

Courtesy Marshall University Joan. C. Edwards School of Medicine

Dr. Lynne Goebel is a Marshall Health physician who specializes in geriatric medicine. She is also a professor for the Marshall University Joan C. Edwards School of Medicine.

Goebel: From a pathologic point of view, I can tell you that 20 years before someone develops symptoms, they have stuff going on in their brain. You’re already developing these amyloid plaques in the brain. Usually, someone will start noticing that they’re having some trouble with their short-term memory, and they may still be functioning well. That’s what we call mild cognitive impairment and it’s a precursor, sometimes, to full blown dementia.

That stage lasts about five years, where someone has some problems, they know they have trouble, but they’re still able to get it together. And they use lists and other things, their smartphones, to help them keep on track and function well. Then they have trouble functioning. So, they may not be able to use the telephone. And they may be trying to use their remote control for their TV as a telephone. So, there’s some strange things that happen and they may forget to pay their bills.

Douglas: You mentioned the amyloid plaque. So, this is a layer or a plaque that’s forming within the brain that’s causing the brain to misfire effectively.

Goebel: Then there’s the next stage where you have actual buildup of protein inside the neurons in the nerve cells. This particular protein is toxic, and it kills the cells. As the disease progresses, you’re going to have death of these nerve cells, and that’s where people lose function, and they lose memories.

Douglas: The plaque is the first stage, then this protein build up is kind of a secondary stage. That’s really where the trouble sets in.

Goebel: We’re still finding out exactly what causes this disease. Initially we thought, “If we get rid of this plaque, then we would be able to cure this disease.” Well, some of the drugs that are out there, that they’re still studying, are targeting that but we’re not seeing the results we’d hoped for in people with early-stage disease. We may be seeing stabilization, but we still need to do more study on that kind of drug. And the side effects of those medicines can be worrisome, like swelling of the brain or micro hemorrhages.

Douglas: Is there any “Aha” moment that this person has Alzheimer’s? Is there a test for this? Is there any way to know definitively early on?

Goebel: Right now it is diagnosed clinically. You’ll go to a specialist, which could be either a geriatrician or a psychiatrist or a neurologist. And that would be the kind of doctor that would do this specialized testing. We do memory tests, and we also look at the patient and see how they’re functioning, because the functioning part is also key to making a diagnosis of actual dementia, as opposed to that mild cognitive impairment.

As far as an actual diagnosis, we’re getting close. There’s a lot of study going on right now about biomarkers. Your doctor could do a spinal tap and send that fluid off and they can say that you possibly have Alzheimer’s disease based on that. And then there’s a scan, called an amyloid PET scan, but your normal doctor can’t get this kind of scan. You can only get it if you’re in a study. On the Alzheimer’s disease website, they do have a study going on called the New Idea Study where you could possibly get this kind of scan. And there’s a doctor in West Virginia, who is participating in that study.

Douglas: Does it help to have that kind of diagnosis? I mean, even if you found out 20 years before the significant onset, we don’t really have any medications to treat it, there’s no surgery to remove it.

Goebel: They did a study where they did this amyloid PET scan on people, and we found out that they had probable Alzheimer’s disease based on that scan. We did treat them differently. We gave them more medications, families were able to plan better for the future, and I think it did make a difference in those patients. I think it is a good thing to try to get that diagnosis made. Now as far as disease modifying treatments, we don’t have that right now, but I think it’s in the near future.

Douglas: You say near as in five years or 15?

Goebel: Maybe even two to five years. I think we’re going to have something we can offer people. I’m hopeful at least.

Douglas: Let’s talk about caregivers for a moment. What do families and caregivers need to know?

Goebel: I always recommend the Alzheimer’s disease association. They have an 800 number that is 24 hours. So if you have a crisis situation, you can call and talk to someone who can possibly help you right at that moment. They also have a wonderful website with all kinds of very important information on there.

Depending on the stage of the patient, they can help with a variety of things, such as in the early stages. You want to do some planning and make sure you have all your legal paperwork and power of attorney in place, and also make plans for yourself as far as being able to say what you want to happen in the event that things get worse.

Later on, there’s other stages of disease, where you’re dealing with communication issues. And the caregivers really need training on that because we know that medication for behaviors is not great. In fact, certain medications can increase the risk of death in people with dementia. So we try to get caregivers to take training and to learn how to get around certain behaviors.

For instance, if a patient is not wanting to take a bath, which happens very regularly, how can you deal with this in a way to get the patient to do it, but that’s not going to be horrible for everyone? There’s a lot of training out there for caregivers.

How To Adjust The Holidays For Family Members With Dementia

While the holiday season can be a wonderful time for families getting together with lights and traditions, it can be a difficult time for people struggling with dementia.

News Director Eric Douglas spoke with Jennifer Reeder to get some tips for families. She is a licensed clinical social worker and is the director of Education and Social Services at the Alzheimer’s Foundation of America.

This interview has been lightly edited for clarity.

Douglas: What is the problem? What happens for somebody who’s struggling with dementia or Alzheimer’s around the holidays?

Reeder: With the holidays comes many traditions that families love to engage in. And when a person has dementia, it can become more of a challenge for people to maintain those traditions, because there may be certain things that might be more difficult for them. Whether that’s remembering how to make a certain recipe, or being able to decorate the home, or large groups starting to become overwhelming for the person. That’s why education is so important, I think, for families to really have some ideas as to what the challenges may be for the individual so they can reduce the potential challenges and the person themselves can have a happier time with their loved ones.

Douglas: So tell me about what some of those challenges would be. What’s the person experiencing? What are some of the reactions they’re having, such as, to a large crowd or blinking lights — that sort of thing?

Reeder: Dementia, especially Alzheimer’s disease, it affects the five senses. So a person’s sight will start to be affected by the disease, which means that things may start to look more two dimensional instead of three dimensional. They may start to have a hard time with depth perception. Walking can become more difficult. The overstimulation of lights, of noises, all of that can affect the individual. If somebody used to love going to parties with bright lights everywhere, and the crowd and all the noise and the music playing for them, that may have brought joy. But now since their senses are all being affected, they can have a more challenging time, it can become overstimulating for them in that type of environment.

Douglas: A press release discussed four steps to make things better for people with dementia during the holidays. Let’s walk through the four steps. (Full description included below.)

Reeder: One of them is to avoid over-decorating. When we talk about those bright, blinking lights or some houses have decorations galore everywhere, although it may look very beautiful, it can cause that over-stimulation. It can cause disorientation and confusion for the person. We want to reduce the amount of decorating that we do and also be aware where cords are because we always want to be avoiding tripping hazards.

Douglas: One of the other steps was finding ways for people to meet one-on-one or in small groups, kind of a quieter, separate environment for somebody to meet with family and talk with family.

Reeder: Creating a safe space, creating a calm place for the individual. We want to try to reduce the number of people in the home if the person does become overstimulated by large groups. But if you just can’t do that, if you have a large family and they’re coming, then create a safe space in a room for the person to be able to go if they need to be able to reduce any bit of distress that they may be experiencing.

As I said before, that’s where people can visit with them. We always, always want to be continuing to engage the individual. It’s never about putting the person in a chair and then bringing them their food and their water, we always want to be continuing to engage the person in group conversations when they can still do that — when it’s not overstimulating for them.

Douglas: What are some of the other ways to help somebody with dementia during the holidays?

Reeder: Another one is about adapting past favorite traditions or creating new ones. For instance, if you always had an evening party for Christmas, or another holiday, and that’s when everybody would always come, let’s say Christmas Eve. The evening time can be very difficult for people with dementia, they can experience sundowning sometimes. So that’s when people can start to experience more irritability, confusion as the day is going by.

But for the individual, it can be more difficult to communicate that. It might come out as irritability, as confusion. So that’s where you might want to shift when you have your holiday events, instead of having them in the evening time, you might want to have them in the earlier part of the day. But you also want to be able to maintain the person’s routine as well, because routine is really, really helpful.

Douglas: So, what have we missed? What else do people need to know going into the holiday season?

Reeder: I always say any plan that we are providing, any type of planning that we are creating, especially when it involves the individual, we want to involve them in the planning aspect, too, so that they can give their input about how many people they want to come over or how they’re feeling that day — and what type of traditions that they may want to continue to do. We always talk about taking a person-centered, strength-based approach. Talking with the individual about what they want to do for the holidays, but what they want to be involved in, and maybe things that they never really enjoyed doing at all. And so it would be better for somebody else to take over on that task or whatever is happening.

It’s really about taking the time to engage the person, taking the time to talk with the individual, about how they view the holidays coming up. And just really doing that preparation, that planning and educating family about the disease. Because I feel like education is what ultimately is going to eliminate stigma. And there’s so much stigma that’s attached to dementia. And the best way to do that is by people learning about the disease and what’s happening for the person so that no one’s ever fearful or wary about engaging with the individual.

Tips from the Alzeheimer’s Foundation of America

Avoid overdecorating. Decorating is part of the fun of the holiday. However, too much stimulation may be challenging for someone with dementia. Keep decorations festive, but simple — too many flickering lights or noisy items could be overwhelming. Instead of elaborate decorations, try choosing a few favorite items. Phase in decorations over a period of days instead of all at once, so that changes to the person’s environment are less confusing.

Create a safe and calm space. Don’t use fragile decorations (which can shatter and create sharp fragments) or ones that could be mistaken for edible treats. Be mindful of potential tripping hazards on the floor, such as wires for decorations. Securely hook Christmas trees to the wall to avoid falls and use menorahs or kinaras with electric candles to reduce fire hazards. As well as a physically safe environment, create a space where your loved one can sit in comfort and where guests can visit in small groups or one-to-one. As much as possible, maintain the person’s normal routine when scheduling visits.

Adapt past favorite traditions or create new ones. Build on old traditions when appropriate, such as enjoying favorite music or movies, or looking at pictures of past holiday celebrations. Start new ones that center on activities and events the person enjoys and can do, such as touring neighborhood holiday lights, and do it together. Take a strengths-based and person-centered approach and incorporate what the person can do and what they choose to do now, rather than dwelling on what they used to do. Focus on those things that bring joy and let go of activities that seem too stressful.

Involve the person in the planning and preparations. Whenever possible, involve the person by asking what traditions are important to them — it keeps them active and involved and helps you prioritize and plan appropriately. For example, if they always sent out holiday cards or cookies and still want to do so, do it together with them. If they can no longer shop for gifts for their loved ones, invite them to help with wrapping the gifts so that they feel they are contributing.

West Virginia University Receives Federal Funding for Alzheimer’s Research

West Virginia University has been awarded federal funds to expand research into Alzheimer’s disease.

WVU was awarded more than $420,000 from the U.S. Department of Health and Human Services for research into stroke and Alzheimer’s disease related dementias.

In a joint statement, U.S. Senators Shelley Moore Capito and Joe Manchin said that Alzheimer’s disease affects more than 39,000 West Virginians, and that stroke is the seventh leading cause of death in West Virginia.

“Having cared for both of my parents who suffered from Alzheimer’s, I understand the impact that this disease and others can have on caregivers and families,” Capito said.

The announcement comes after WVU chemistry major Rachel McNeel presented her research on early detection of Alzheimer’s to Congress earlier this week.

Nationally, the CDC estimated in 2020 that nearly 6 million Americans were living with Alzheimer’s disease. Officials expect that number to triple by 2060.

Training In Identifying Alzheimer’s Coming To W.Va. Law Enforcement

Knowing the difference between someone intoxicated and someone with a brain disorder affecting memory and behavior will now be easier for West Virginia first responders.

David Zielonka, Public policy manager with the Alzheimer;s Association West Virginia Chapter said more than half of the 40,000 West Virginians with Alzheimer’s disease or dementia will wander off at some point.

Gov. Jim Justice signed Senate Bill 570 into law Tuesday. It requires all new law enforcement and correction officers to undergo specialized training in how to identify and communicate with those living with dementia and Alzheimer’s disease.

West Virginia Sheriff’s Association Executive Director Rodney Miller said there have been some challenging incidents, and the training will be helpful for all involved.

“If they can easily recognize what folks are going through, we can let them handle them better,” MIller said. “Get them back to their caregivers easier and be a resource for caregivers as well.”

Miller says all current law enforcement personnel as well as firefighters, emergency medical technicians and dispatchers will be offered the specialized instruction as well.

The training includes understanding the risks associated with Alzheimer’s, including elder abuse and exploitation. The Alzheimer’s Association West Virginia Chapter will assist the state in designing and teaching the courses.

37 Thousand West Virginians Now Have Alzheimer's Disease

37 thousand West Virginians have Alzheimer’s Disease, according to a report released this week from the national Alzheimer’s Association.

For the first time, the annual Alzheimer’s Disease Facts and Figures report also included a national survey on the financial cost of Alzheimer’s or dementia. It shows the diseases can be really expensive for families and caregivers, costing Americans 236 billion dollars in 2016.

In West Virginia, there are more than 100 thousand Alzheimer’s caregivers, providing more than 120 million hours of unpaid care. That work is valued at over 1.5 billion dollars.

Nationwide, nearly half of those at-home caregivers must cut back on their own expenses in order to afford dementia-related care and more than a third lost income due to employment disruption. Those resulted in an average loss of approximately 15 thousand dollars in income compared to the previous year.

The report projects that by 2025, the number of West Virginians with Alzheimer’s or another dementia will increase by almost 20 percent.

Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation.