Talking With Joanne Koenig Coste: How to Help People with Alzheimer's Preserve Their Dignity

The author of "Learning to Speak Alzheimer's" shares her tips for helping loved ones feel more in control and stay independent longer.

In Learning to Speak Alzheimer's:A Groundbreaking Approach for Everyone Dealing with the Disease, Joanne Koenig Coste writes about greeting a woman she knew in an Alzheimer's patient support group.

"Have we met before?" the woman asked. "You don't look at all familiar."

Koenig Coste didn't tell her that of course they'd met, on a few occasions. Instead, she took the woman's hand in hers and said, "It is always so nice to meet new friends." Visibly relaxing, the woman squeezed her hand in return, and Koenig Coste felt buoyed by how she'd handled the situation.

"I had entered her world," she writes, "and it seemed like a nice place to be for a while."

Meeting people with Alzheimer's in their own world is one of the main principles of Koenig Coste's book of advice on caring for someone with the disease, and it's something she learned on her own. She was in her 20s, with three young children, when her husband, Charles Koenig, started showing signs of early Alzheimer's in the late 1960s. When he was diagnosed with the disease a few years later, after a stroke at the age of 46, she had just given birth to their fourth child. At the age of 32, she was changing diapers for both her baby and her husband. A year later, she lost her husband.

There were no books on Alzheimer's, no support groups, no Alzheimer's Association, so Koenig Coste had to make it up as she went along. She recalls realizing at one point that when her husband kept opening the door to go outside, their toddler would follow, so she installed a new lock higher up on the door that her son couldn't reach. But she also made an unexpected discovery: Her husband couldn't figure out how to use the new lock, reducing the likelihood of his getting lost outside.

The event, she says, helped her see that she could stop living in fear of what might happen next and make some positive changes in the way they lived.

After her husband's death, Koenig Coste took a job as an aid in a nursing home, where she began to develop and incorporate her methods. Now a nationally recognized expert and advocate for Alzheimer's patents and family care, she was named a "Woman to Watch in the 21st Century" by NBC Nightly News and a Reader's Digest Health Hero.

Learning to Speak Alzheimer's includes hundreds of easy, practical tips for simplifying the world of Alzheimer's sufferers to improve their quality of life as well as that of their caregivers. Some examples: Introduce finger foods early to preserve dignity and provide more opportunities for success; don't serve light-colored foods such as macaroni and cheese on a white plate, because the person will not see it; when a person is in the middle stage of the disease, replace wall mirrors because they can frustrate and scare those who can no longer recognize their own image in the mirror.

Koenig Coste shared other tips, as well as her thoughts for the best way to celebrate the holidays with a loved one who has Alzheimer's, with

Let's start with the question on every caregiver's mind at this time of year: What can I do to make the holidays go smoothly?

Of course, it's always better not to travel but to have a small dinner at home where the situation is familiar to the person. Mom may go out to Thanksgiving and everything is fine, and then she comes home and all hell breaks loose because there we go with another change, and change impacts the person.

It's also best to have small groups visit, rather than a large gathering. And involve the person any way you can. If Dad's going to set the table, just have somebody there when he's not looking, to see that everyone has a napkin and not five forks -- and if they do, fix it and thank Dad for setting the table.

What if you've already made plans to go to someone else's house?

The most important thing is to always have a backup plan. If we're going over to Cousin Martha's and it doesn't work because Dad gets anxious, what are we going to do? Well, arrange in advance for Cousin Charlie to take you home if that happens.

It's also good to assign family members, surreptitiously, with a job in advance -- the first half hour, Chuck has Dad; the second half hour, Mary has him -- so that somebody is with him all the time. And involve children. Children can handle this. I hate to hear, "I don't want the grandkids to remember him this way." The grandkids do just fine. As a matter of fact, they do much better than we do.

What's the best gift for someone with Alzheimer's and his caregiver?

For the caregiver, I'd say a gift certificate for a massage. For the patient, a DVD on a topic that he likes -- for my husband, it would have been something on the 1948 Yankees. There are also all the old MGM musicals on DVD now, and those are wonderful even for someone far into the disease.

Your husband was so young when he was diagnosed. What was the first change you noticed in him?

Problems finding words. The more people I talk to, especially with the early-onset folk, the more I see that finding words seems to be one of the very first problems. He had a great, great feeling for language, an incredible personal lexicon that changed very dramatically.

He had vascular dementia, which meant that the frontal lobe was affected, so his ability to control himself was definitely challenged. And he was a large man -- six feet, six inches, 220 pounds, had been a professional athlete. When he was frustrated, the way he reacted was to act out, and that was very scary. It was scary for him as much as it was for the children and me, and I think you also see that commonly with a younger person.

Do you think there's still a certain shame to having Alzheimer's?

Yes, and I don't know why. It's a neurological illness, not a psychiatric illness -- although I don't know why we still have a stigma with that, either.

Is that what robs people with Alzheimer's of their dignity?

Dignity is taken away by someone else, not the disease. I think of the times that my husband dressed himself to go out and other people would gasp at this three-piece-Brooks Brothers-suit guy in plaid golf pants and a flowered shirt. Oh, it was awful, when I think about it. You could just see the dignity dissipating

Was there a turning point in his care when you felt like you understood something new?

Yes, one day when I was so tired of telling him to do something over and over, I angrily said, "Do it because I love you." He looked up at me and said, "Your eyes don't." My eyes didn't love him, he was saying, and I realized that my body language was more important than anything I could say to him. That's what learning to "speak" Alzheimer's is all about. I was speaking with my eyes, and they were belying what I was saying. It makes me a little teary to think about it even now.

What was it like for your children?

Imagine being a child bringing your friends home and your father walks out with his underwear tied around his head. It was the last time the children brought friends home. But I look at my children, who are now in their 30s and 40s, and I think they are the coolest people. They are wonderful. Something good must have happened from that experience.

One of the things we learned as a family was that the more we laughed, the stronger we were. Laughter has got to be a part of this. If you don't have a sense of humor, then you need to find somebody else to do the caregiving, or you're never going to make it through.

People with Alzheimer's also have an innate sense of humor. I think it's because they've lost the control, so the humor is kind of a natural. Even the old poops who never grinned in their life develop Alzheimer's and laugh along with you. What a wondrous thing that is! Use it! There's so much that's bad that we can turn around to work for us.

You wrote about people with Alzheimer's realizing that their families are mourning their loss even when they feel that they are still there and still have feelings. Can you elaborate on that?

This just happened in a men's support group I do with early-stage patients. We have a fellow in the group with a profound loss of words. He understands well, but he struggles with everything he says. We were talking about losses and Bernie said, "Oh, my loss of w--" and the other men jumped in and said, "Your loss of words, Bernie." And he said, "No, my loss of worth." Because no one asks him anything anymore.

We stop including the person when it seems like they can no longer give us any information that is useful to us. That doesn't matter! They need to be included. Ask the person what he wants for supper even if you know the answer is going to be "Whatever you're making." So what! You've included him and made him feel like he's still worth something.

When a person with Alzheimer's holds his head and says, "What's wrong with me?" we say, "Oh, it's just part of aging. We're all forgetful." That doesn't help. He thinks, "I know something is wrong with me, I know this isn't normal, and you're telling me everything is fine." So what does he do? He doesn't talk about it anymore.

The number-one person who won't speak to him is, of course, his physician. It's not usually a part of the dialogue. The doctor makes a diagnosis and gives it to the family member, usually -- they don't even give it to the patient. Right away, we're taking the disease away from him. What we need to do is reach over to the person and hold his hand and say, "My God, this must be scary for you." We have a problem doing that. We want the professionals to take care of it.

I'm in Massachusetts, and one of the founding chapters of the Alzheimer's Association was here, so we're a little bit ahead of things. We have over a hundred groups for family members and only 10 for patients. And if you look across the country, most states haven't even heard of support groups for patients.

You've said in interviews that no one with Alzheimer's needs to be incontinent. That will come as a big surprise to some caregivers.

I'm not talking about in the final stage, but there's no medical reason for that to happen early on.

First of all, it's a lighting issue. Is the light on in the bathroom? Can they see it? Space is also a problem: How do I get there from here?

When you have the feeling you have to go to the bathroom, you know you have some minutes before you would "have an accident," but with an Alzheimer's person, it's "I'm going to have an accident" -- they go right to that point and then they need to find the bathroom fast. I train nurse's aids that if they see an Alzheimer's person start to look around, get them to the bathroom. The way you do that is to say, "I need to go to the bathroom. Why don't you come with me?"

Often men seem to be incontinent earlier than women, but it's just that they have more to take off -- belts and buckles and flies to unzip. The minute we get the right clothes -- like elastic-waist pants -- and have the bathroom door open and the light on, it's different.

One of the most important things I did was to paint my bathroom bright red, so the toilet kind of popped out. It makes a tremendous difference. Early-stage Alzheimer's people have a perception problem -- color, contrast, and depth. I think most people think that happens further on, but it's quite early.

Now if I have those problems and I need a toilet, and the bathroom walls are white and the toilet is white, I'm going to be incontinent. It's a given. Changing the environment is like giving the brain a prosthesis.

That's what we're teaching in nursing homes and assisted living now. And anything that's done in assisted living, you can do at home. I always say that green paint costs the same as white paint. Most of the things you can do are cost-effective.

How can you prevent falls in people with Alzheimer's?

One of the reasons Alzheimer's people fall a lot is always the environment, never the disease.

Get rid of glares. Last week I was in a facility that had a great program, but the floors looked like they were painted with ice. And they were very proud of how clean and shiny they looked. But there are ways to be very clean and also dull, to help people with perception problems.

That old tile that was very popular in Hollywood homes -- black and white check -- is horrendous for a person with Alzheimer's. They think they're going up and down and into holes and up steps, and they trip. And often going up stairs, there's the perception that there's one more step or one less. There are a lot of falls at the tops and bottoms of steps.

I have run Christmas tree lights along the side of steps in people's houses to create an outline of what the steps look like. Stores like Home Depot and Lowe's sell reflective tape that you don't need to shine light on -- it reflects day and night. That's helpful for incontinence, too. You can run the tape from where the person gets out of bed to the bathroom, so that at night he has that cue, which is all he needs so that he's not urinating in the closet.

Do you have any thoughts on when it's time to place a parent with Alzheimer's outside the home?

I get that question at every presentation I do. And the answer is that every situation is different. But the rule of thumb is: When you're going in the house where the Alzheimer's person lives and you don't want to open the door, it's time for someone else to do the care. And someone else can do it better -- not love better, but provide care commensurate with where the person is in the disease.

People say, "But I promised my parents I'd never put them in a nursing home." Yes, you promised, but they didn't promise they'd never have Alzheimer's. There are good places out there. Nursing homes aren't at all what they used to be. Some have great programs. Many Alzheimer's people actually seem to do better when they're placed.

Caregivers often say they don't go to support groups because when they have that precious little time off, they want to do something else. They don't want to be thinking about caregiving.

I hear that, but I just keep saying, "It might be what saves you." Going to the hairdresser might make you feel better for the week, but this might save you. Most groups only meet once a month, so that's just two hours out of the month.

What do you most wish you had known when you became a caregiver?

On a very practical level, I definitely wish I'd known that it's OK to lie to the person with Alzheimer's if lying is going to put you both in a better place. The other night when I was speaking in Connecticut, a woman asked, "How can I not tell my mother that her mother's dead? I can't do that to her." Well, she could go on telling her mother, every day when she asks, that her mother is dead, and have her sob and scream.

What would you say to the mother in that situation?

I would say, "Oh, I'd love to see her too. She's going to be here in about an hour. Let's have a cup of coffee while we're waiting for her." Anything to just get through the angst. The problem is the emotion, not what the person is saying. When I say, "I want to see my mother," what am I really saying? I'm saying, "I don't feel very safe."

"I want to go home" is the most common thing that Alzheimer's patients say, and sometimes they're right in their own house. Well, what does that mean when they say that? "I want you to hug me and make me feel at home, that I'm in a place where I'm secure." And that's what we need to do.

I can remember hearing nurse's aids on an Alzheimer's floor saying to patients, "This is your home now." Well, it's not if you're the Alzheimer's person. And then the patients get aggravated and agitated, and we give them medication to calm them down, when what we needed to do was give them a little "fib-let." A fib-let is better than a tablet.

What could the nurse in the hospital say?

"I'd like to go home too. My shift's almost over, so wait for me." Or, "It's raining and freezing outside. Why don't we go tomorrow instead?" Or, "The bus has broken down and it's not coming right away."

The secret is to focus on one thing at a time. That's all an Alzheimer's person can do. So if the care partner says, "Let's have some chocolate," and I'm focusing on chocolate and a cup of coffee, I'm not thinking about going home. The other memory is gone. Will it come back? Sure, it could. And what does the caregiver do? You do the whole thing again. But the time comes, and it comes very rapidly, when you'd give anything to have the patient ask the same question again, but they're not asking it anymore because they've gone further into the disease.

Did you ever feel guilty doing that with your husband -- that you were somehow cheating him?

Like I was infantilizing him? Absolutely not, because it works. The alternative is stay in our reality, but that doesn't work. And when you see that the person is feeling good, how could you possibly feel guilty?

Do you think it's difficult for some caregivers to enter into the Alzheimer's world with the patient?

I think it is because it's counterintuitive. But our reality is not a place that Alzheimer's people are familiar with. It makes them very frustrated, and logically so. Wouldn't it be frustrating to us if somebody was insisting that it's 2012 when we know it's 2008? Well, that's how they feel, and that's why they often stop talking. If they're going to make a mistake every time they talk, they're not going to talk.

For a while, even clinicians believed that the lack of speech was because people had lost their ability to understand and communicate, but that's not it at all. It's the fear of being wrong, of feeling that they're not worth anything anymore. But it doesn't have to be that way.


11 months, said...

Thank you for your help in dealing with a disease, that no pill, no surgery or therapy is going to cure. Every day holds challenges. I don't want my husband to vegatete, but it's difficult to find things that he can do. Our daughter kids with him a lot and he loves. Music, church, funny movies are all things he enjoys, but don't think he's going to mow the lawn. I'm working at going into " his world". I have a long way to go

over 6 years, said...

Very helpful....

over 6 years, said...

This supports what I have been trying to do with my mother and aunt, and,yes, it is very difficult.

almost 7 years, said...

I too appreciate the "tip" about people doing "shifts" during family gatherings. And I empathize with venus about what works today may not work tomorrow. I have had to learn the hard way to curb the natural instinct to share information as we used to do, to not make off the cuff remarks, and to try as best I can to intercept mail and phone calls , because so many things trigger distressed attempts to understand what it's all about - which can go on for hours, if I can't create a lasting diversion..

almost 7 years, said...

Encouragement and reinforcement - two things I need most at this stage of my husband's dementia. Thanks so much to both involved.

almost 7 years, said...

Reinforces what I already know, and reminds me of what i have been failing to do! thanks. I had Coste's book right at the beginning, which gave me confidence as caregiver. And hope...

almost 7 years, said...

The perception problem for one, but as my 79 year old husband has only been diagnosed recently I found the whole article helpful. I also felt reassured about some of the things I am doing right! It's left me feeling comforted and not so alone. Thank you so much Joanne.

over 7 years, said...

I don't have to feel guilty about lying if it helps and doesn't hurt. This woman was so young and so brave!

over 7 years, said...

This is a great article! Thanks!

over 7 years, said...

The discussion about lying to your loved one. I have found that sometimes the truth is just too painful for the Altheimer's patient. For example, telling my mother about the death of her brother is just too much for her to handle over and over. It's like she is hearing it for the first time, every time. What I find that makes her feel happy is when I ask her about one of her best recipes or about her favorite flowers, etc. We share some of our best times when we talk about things that she used to love. Those are the precious moments.

over 7 years, said...

Many things. The idea of 'assigning' Mom's care to people in shifts at a family gathering is genius. The idea of body language being more important than words makes sense. The suggestion that when you can't open the door anymore is the time when it's time to move Mom is good advice. I had been hung up on 'honoring' my mom. A counselor finally asked me which was more honoring, having Mom live with me and ruin our relationship, or have Mom live in a facility where she was well cared for and we could have some space allowing our relationship to be preserved. The latter made sense to me. Unfortunately, it hasn't made sense to Mom. She's angry. That was helpful to me too in the article. A lot of advice given for AD doesn't seem to apply to Mom. We think there is more going on that just AD and this article confirms that to me. She has abused alcohol all her life so the doctor thinks that while she may have some Alzheimer's, she also has brain damage from the effects of alcohol abuse. So not all of the behaviours line up. She can't be devirted when she is continually saying she wants to go home. If you suggest a cup of coffee, she ignores that and repeats that she wants to go home. And each time is more angry than the last until I eventually have to leave.

over 8 years, said...

vensus read read read.I have read, because Ive never dealt with this before.Mom started six years ago.I learn what works for a while, then I realize it no longer works as it did before.Thats because moms moving into the next stage.She now talks to who she sees as her mother in the mirror,and cries out to get to her.I just read how having so many dolls in her bedrm.may scear mom.Mom cries all the time, it makes me feel as IM not doing enough.When really I no I am.But when I see anyone upset,I want to reach out to them.But moms sick, she pushes me away? leaves me at a lost for words.

almost 9 years, said...

when I had to make the decision to put my husband into assisted living, I was torn about how to effectively get him in there since he was so adamantly opposed to "nursing homes". My sister reminded me that I wouldn't be lying in the true sense of the word, I would be using "loving manipulation". That helped me tremendously and I had much less guilt.

almost 9 years, said...

I like what you write. I like the way you write it. Speaking Alzheimer's takes somet thought, it doesn't just come naturally. I'd like to mail you my book "Just a Word". I'd be honored if you would read it. Thank you in advance. Rose

over 9 years, said...

Absolutely right. I learned the importance of "lying" the hard way.