Author: Maggie Sullivan

Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.

What Do You Say to Someone with Dementia?

Posted on August 4, 2024March 25, 2026 by Maggie Sullivan

I got a call from my neighbor Marion.

“I need to talk to you. My friend Jean was just diagnosed with Alzheimer’s. I want to visit her, but I don’t know what to say to her. What do you say to someone with Alzheimer’s?”

The stigma of Alzheimer’s disease (AD) is so strong, it can lead us to imagine that, once diagnosed, a person changes almost overnight. We can’t help wondering, what will she be like now?

I told Marion, “Jean will still be Jean. If you just keep that in mind, you’ll be treating her in ways that show that you still value her friendship as you always did. That’s what she needs most right now.”

“But,” Marion asked, “should I say, ‘I hear you have Alzheimer’s?’”

“I’d give her a chance to bring it up first. If she doesn’t, try saying, ‘I heard about your diagnosis. I just want you to know, if you want to talk about it, I’m glad to listen. If not, that’s OK too.’”

One man, himself recently diagnosed, said, ”People are not sure how to respond when the topic comes up. Most of them change the subject or attribute my symptoms to aging and say, ‘I forget things too.’”

Such discomfort is very common and understandable. But tragically, it leads to the person diagnosed being ignored. And it dismisses their very real and frightening trouble remembering.

Family members and friends need to know that people diagnosed with AD or any other dementia are sensitive. Their feelings can be hurt, and they are often lonely. Jean needs her friends to be with her, to show her she is still important to them.

How we engage people with dementia reveals–often unwittingly—a lot about what we think of them. Are we distracted, because we don’t think they have anything interesting to say, and we’re essentially pretending to listen? Or do we listen actively, letting them know we want to understand, because what they say is important to us?

As the disease progresses, people living with dementia need the patience and good listening skills of others because AD may make it increasingly hard for them to communicate.

But the people around them face dilemmas they have no preparation for. Many of their natural ways of responding and interacting get them into trouble.

Here are some tips to help you avoid unintended outcomes:

Don’t say, “Do you remember…?” They may not be able to. If you want to reminisce about a time you were together, say, “I remember when we went fishing in Maine, and you were the only one who caught a fish!” In that way you may spark a memory without putting them on the spot.

Make eye contact and listen with all you have. As one woman with AD told her caregivers, “Listen with the ears of your heart.”

Don’t interrupt, because if you do, the person may not be able to pick up the thread of their thoughts again.

Don’t exclude the person when you’re having conversations with others. This can happen even though you’re not aware of it. Be proactive about inclusion!

Be patient. Dementia can make it hard for people to find the right word. You can supply the word if you know it, and they don’t take offense. You might say, “Shall I guess?” One woman was so comfortable with her friends that when she was stuck for a word, she could say, “What’s that big water thing?” And someone would guess, “The ocean?” People living with AD sometimes invent new words for common objects or rely on gestures instead of speech. They may take longer to pull their thoughts together. Give them time and quiet; don’t distract them.

Don’t argue. There’s a maxim in the Alzheimer’s community, “If you argue with someone with Alzheimer’s, you get what you deserve.” That is, a major meltdown. But more important, by arguing you are eroding their sense of security and their self-esteem—both of which are fragile in view of their many losses. Don’t criticize or correct them, even when you’re obviously right. Just let it go.

Don’t condescend to them by using elderspeak—“Come dearie, let’s get dressed”—or baby-talk. They will rightly be offended.

Don’t ask open-ended questions. “What would you like for dinner?” is unanswerable for someone who can no longer remember which foods one eats at dinner or what they’re called. You can ask instead, “Would you like chicken or spaghetti for dinner?” You’re still giving them a choice, but it’s a choice they can make. When even two choices become too much, say, “I know you love chicken. Shall we have chicken for dinner?”

Be honest if you don’t understand. Say, “I’m having trouble understanding. Can you help me?” That tells the person you care about what they are trying to say and want to work with them.

Following these guidelines will help create a safe and supportive environment where the person with dementia is valued, enabled and included. In such surroundings, they may surprise you with their ability to understand and communicate.

Alan Dienstag, PhD, is a psychologist who has worked with people with AD in support groups. He continued to work with one woman long after her language was too impaired to be in a group. But eventually it became harder to connect with her and she seemed to have lost all language. Their last visit was just before he was set to go on vacation to the beach.

He knew she loved the seaside too, so he said to her, “Ann, I’m going to the beach. I’m going to be away for a while.” Her face lit up.

“What do you love about the beach?” he asked.

She was quiet for a long time, and he lost hope that she could answer.

But then she turned to him and said, “There’s a certain kind of music there.”

At the Heart of Good Care

Posted on March 12, 2024April 2, 2026 by Maggie Sullivan

This is the last in a series of five blogs about nursing home care.

My old friend Billy called me recently to ask:

“What the hell is ‘person-centered care’ supposed to mean? I toured three nursing homes and each of them gave a different answer.”

Billy’s wife has vascular dementia, and it’s getting too difficult for him to handle her care at home.

“I had been told to choose a home that gives person-centered care,” he told me, “but one home described that as ‘the person comes first’ though they couldn’t say exactly what that meant. Another said the person could choose what they wanted to eat at every meal. And the last one said they learn from the family all the person’s quirks and try to work around them.”

Billy had stumbled upon the confusion that surrounds person-centered care. Although the term itself has become ubiquitous, sometimes it amounts to little more than a marketing tool.

Institutions are slow and reluctant to change. True person-centered care overturns the relationship between the resident, the caregiver and the institution. It is based on what’s important to the one being cared for rather than what’s convenient for the organization. Consequently, it’s hard to implement and thus hard to find perfect examples.

But increasing numbers of care homes are making an effort to move in that direction, as shown in the responses to Billy’s question. What follows here will help you understand the basis of person-centered care, and how to recognize it even when it’s only partially implemented.

The first barrier to this kind of enlightened care is the widespread stigma affecting people living with any kind of dementia. Two private duty aides working for a good friend of mine assured me one day that my friend, who did not have dementia, was much better off at home because nursing homes were full of “demented people who don’t know anything anymore. There’s nothing inside their heads.”

Care homes must screen their prospective staff for any sign of attitudes like those that devalue people living with cognitive disorders, because the way we view people affects how we treat them.

Good care begins with respect. That’s what is missing also in the following interactions.

We’ve all probably seen a worker in a busy nursing home come up to someone in a wheelchair, release the brakes and wheel them off somewhere without a word of greeting or any hint about where they’re headed. That amounts to treating someone like an object, not a valued human being.

Janice arrived one morning to find an aide dressing her mother. She knew her mother could do most of it herself, but the caregiver had seven other people to dress that morning and said it was faster to do it all herself.

Not allowing someone to use the abilities she has is disempowerment.

In good care, the person is more important than the task. If supporting the person’s strengths is highly valued and the task comes second, the caregiver will facilitate the resident dressing herself. This takes time and wreaks havoc in an institution where workers are expected to check off jobs-completed against a clock.

Person-centered care becomes a partnership in which an activity, such as getting dressed, is done with the person, not to or for them. In that way, familiarity and connection are established.

The family plays an important part in helping the staff understand their loved one’s history and likes and dislikes.

When my mother was living in a nursing home late in her dementia, I compiled a history of her life in photographs and hung it in her room. The attention and enthusiasm it drew from her care partners made me regret that I hadn’t done it much sooner.

The picture of the resident is further filled out by learning her preferences. Her choices—when to wake, when and what to eat, and when to go to bed—are what determine her schedule, not the convenience of the institution.

New residents who continue on a schedule like the one they have followed most of their adult lives adjust more easily to living in a new environment. And having choices maintains some of their autonomy.

The crucial thing to observe when you tour a memory-care unit is the relationship between staff and residents. Does the care partner engage the resident, calling her by name and in a warm manner? Is her tone natural, rather than an “elder speak” version of baby talk? Does the resident look relaxed and engaged? Do they often look into each other’s eyes?

Such a relationship is close to impossible to establish without dedicated staffing. Most care homes rotate their staff. That is, they move workers around from one unit in the building to another. That interferes with close relationships forming between resident and caregiver. With a dedicated staff, a resident has the same care partner every day.

That continuity fosters the close connections that are essential to someone with dementia. It ends their isolation, gives them a sense of security and trust, and creates a sense of belonging.

And the care partner feels more satisfaction: knowing the resident better, she is more able to solve problems, is more alert to new problems and simply cares more.

Anna had been Sam’s care partner for two years. His verbal communication was compromised, but because she knew him so well, she was able to understand his gestures and facial expressions.

She returned to work one Monday morning and learned that over the weekend, Sam had struck out at an aide trying to bathe him. A different care home might have resorted to giving him an antipsychotic drug. But this home knew to wait until Anna came back; she would solve it.

Anna suspected that the weekend aide had not respected Sam’s strong need for privacy. First, she checked him gently and carefully for any signs of pain, and when she found none, she left instructions that Sam should not be bathed on weekends.

A helper who cares—and is well-trained—will see a forceful expression as an attempt to communicate, rather than disruptive behavior.

Dedicated staffing is a big factor contributing to successful person-centered care. It encourages relationships that benefit residents and staff, and it increases staff retention.

In ”Dementia Beyond Disease,” G. Allen Power, MD, who specializes in dementia care, writes, “Any organization that does not provide dedicated assignments offers a lower quality of care than they could otherwise. End of discussion.”

If you can’t find a care home with dedicated staffing, be sure to choose one that has a low staff turnover rate.

The needs of a person with dementia—for security, trust, affection, a bit of control, connection, meaning—are all best met in the context of relationship.

A mutually caring relationship is at the very heart of humane care.

Workers who are open to close relationships with people in a memory unit are valued and respected. And they in turn treat residents with care and respect. You can pick up on that good will when you visit.

I remember arriving at my mother’s nursing home to visit her, and being greeted warmly by the receptionist and everyone I passed. I found my mother in the activities room, happily stroking a sleeping puppy on her lap. The nurse had brought in her own new pet especially to share with my mother. I thought how lucky my mother and I were to be part of this community of kindness.

I wish that for you and your loved one too.

Choosing a Home That Cares

Posted on December 12, 2023April 7, 2026 by Maggie Sullivan

Ted, now 73, was diagnosed with Alzheimer’s two years ago. His wife, Andrea, attends a caregiver support group I lead.

Recently she told the group, “I know it’s early and my husband is far from needing a nursing home now, but when I read all this stuff about nursing homes being understaffed and giving terrible care, I swear I’ll never put him in one. But then I think of what you in the group have said—that I may reach a point where I simply can’t do it anymore. So then I think I better start looking now, because a good home is going to be almost impossible to find. It all makes me feel so hopeless, I don’t do anything.”

Andrea isn’t alone. The high death rate in nursing homes during the pandemic and their continuing staffing problems have a lot of families feeling more reluctant than ever to trust others with their loved one’s care.

It’s true that understaffing is widespread and makes finding good long term care harder, but it can be found. Here’s how to begin your search.

Start early! When someone suffers from a dementing illness, a slow decline is likely, allowing enough time to find a good nursing home. But an unforeseen event—a stroke or an accident—can happen and could force you to make a quick decision.

Think carefully about the kind of care your loved one needs.

Three levels of long-term residential care are commonly available: skilled nursing, assisted living and memory care.

Skilled nursing facilities are for people with medical problems who need the attention of registered nurses and certified nursing assistants. Some skilled nursing homes accept patients with dementia. Being medical facilities, they are regulated by federal rules. Inspections, however, fall to the state they’re in, and the thoroughness varies. Because skilled nursing requires a professional staff, it costs more than lower levels of care.

Assisted living homes serve people who need some assistance, for instance with bathing, dressing, medications or meals, but not total care. Many require the person entering to be able to walk and assist in some of their care. You need to carefully check the staff’s ability to give dementia care.

Generally staffed by licensed practical nurses and certified nurses’ aides and often homier than skilled facilities, assisted living homes are not regulated by the federal government but only through state agencies—like the health department.

Memory Care is most often given in a unit that’s entirely for people with dementia. The care is similar to what residents get in assisted living, enhanced to provide what dementia requires. The label can mean many different things. It can indicate merely that they will accept people with dementia. Or it can mean they offer care in an environment designed specifically to ease the experience of those with cognitive decline and have a staff well-trained in dementia care. Usually, memory care amounts to something in between.

When you consider placing your loved one anywhere, ask yourself, what do they need help with? What level of care do they need? Are there behaviors that you have learned to work around? You will want the assurance that the staff at a memory unit has been trained to handle that.

Because of the stigma associated with nursing homes, you may feel more comfortable telling people, “My mom’s in assisted living.” But if she needs skilled care—or memory care—she won’t get the kind of attention she needs in ordinary assisted living.

Find out whether a facility you’re considering is for-profit or nonprofit. The difference can have consequences for your loved one’s care.

For-profit homes more frequently make the news for gross negligence, due to putting earnings above adequate care. But there are exceptions. Two of the for-profit, memory-care units near where my support group meets are excellent. Much of their success comes from the fact that they were designed from the start for dementia care—from their physical layout to the training of their staff.

Nonprofits are often mission driven, not motivated to make money for shareholders. Their mission might be to serve others; some have a religious affiliation. The mission of the excellent nonprofit organization Kendal is “to transform the experience of aging.”

Consider a home’s location and cost as you investigate your choices. Andrea began her search for eventual long term care for Ted right in the support group by asking the other members what determined which home they chose for their family member. Memory care was primary, followed by distance and cost.

Those are good measures to use as you start your search. Try to find a good place within 15 or 20 minutes of your house so it will be convenient to visit. I needed to travel 35 minutes to get to the excellent home I found for my mother, and that meant I visited two or three times a week rather than three or four. (I mention cost below.)

Your local Area Agency on Aging can give you a list of local facilities, as can the local chapter of the Alzheimer’s Association. Your state’s long term care ombudsman—an official advocate for residents in care homes—can at least steer you away from the worst facilities.

Visit residences that seem like good possibilities. Once you have several well-recommended homes that meet your needs regarding location and level of care, call them and speak to the person in charge of admissions, now usually called the director of marketing.

Verify that the facility gives dementia care and ask how their staff is trained to work with that population. To assess what they tell you, check the Alzheimer’s Association’s list of recognized training programs.

Ask about the cost and what is included. A top-notch, for-profit dementia care home is going to be expensive. Excellent care is sometimes given for less in nonprofit homes.

Find out if the rate increases as the resident needs more care.

Make an appointment to visit any homes that sound like good possibilities. Your visit will include a tour and a meeting with the marketing director, when you can ask all the questions you have. Unless you are under pressure to find a place, don’t do more than one in a day. You’ll need time to sort through what you have learned. Be sure to pay a second visit to any that you don’t reject on the first round. You can’t possibly see all that’s important in one visit.

You can find online check lists of what to look for and questions to ask on a nursing home visit, but the very best source is the book The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias by Nancy L. Mace and Peter V. Rabins. Almost all libraries have a copy.

It has often been called the caregiver’s bible. A reference work, it covers almost everything a dementia caregiver might need to know. The only caveat is that it includes a lot you don’t need to know because there are lots of things that won’t happen to your loved one and you on this journey. It’s best for consulting when you have a question or a problem arises.

There is no ideal care home. You will need to compromise. Your task is to find the best one available for your loved one.

An important part of your search will be learning what constitutes good dementia care. Once you know that, bad care won’t be hard to spot.

To be continued in my next blog, “At the Heart of Good Care.”