How to Know When It’s Time for More Dementia Care

For families caring for a loved one with dementia, deciding when home care is no longer enough is rarely simple. The signs are often gradual — a missed medication here, a stove left on there — and knowing when to seek more support, whether through in-home help, adult day care, or a residential community, can feel overwhelming without a clear framework for how to approach it.

Cory Fosco has spent 34 years working in long-term care, with experience in social work, admissions, skilled nursing, senior care, and health care technology. He is the author of “The Question of When: A Practical Guide to Knowing When It’s Time for Assisted Living, Memory Care, or Skilled Nursing.”

In this conversation with Being Patient’s Mark Niu, Fosco discussed the safety, medical, and social signals that suggest a person with dementia may need a higher level of care, and why families so often wait until a crisis forces their hand. He broke down the range of care options, from in-home help and adult day care to assisted living, memory care and skilled nursing, and shared what to look for, and which questions to ask, when touring a community. 

Fosco also addressed common misconceptions about Medicare and long-term care costs, and offered guidance on how families can build a foundation now so they aren’t forced into a rushed decision later.

Being Patient: What are some of the clear signs that a person with dementia may need more care than they’re currently receiving at home?

Cory Fosco: I really categorize them into four different signals that I try to help families with, and I try to break it down to be as simple as possible. High level, it’s safety, medical, social and emotional, and then the caregivers’ health.

Breaking those down a little bit, for dementia those safety signals usually show themselves first — wandering, getting lost on a route you’ve taken for 30 years, leaving the stove on, missing medications, falls that might start happening. Those are some of the safety signals you should look for. 

From a medical perspective: Is the person losing weight? Is their hygiene, which maybe was always very good, being overlooked a little bit? Are those chronic conditions becoming harder to manage? And then from a social and emotional perspective, oftentimes what I’ve seen is their world gets smaller and smaller — they’re afraid to go out, and the family sees changes in their personality.

So those are the signals for a specific person with dementia, but also think about the caregiver themselves. Are they undergoing some of those things? Is the mail piling up? Is their world getting smaller as well? So if you put all those together — not one single area, but maybe you start to see a bit of a pattern — that’s a sign that maybe something more is going on. What I suggest to people is, at the end of the day, put those things together and keep a log. That’s really helpful for them.

Being Patient: Sometimes people might think that it’s just a difficult period, and that we’re going to get over that, as opposed to needing to make a permanent change. That’s a fine line — how do we know which way to go?

Fosco: I think a difficult situation usually has a cause you can name — an infection, a hospital stay, a medication change. And when that specific situation resolves itself, the person might go back to where they were. The real change that happens — that’s a bigger signal that you might need a higher level of care — is after that cause is gone: then maybe you start from a new baseline, and it’s a completely different person. I think at the end of the day, you’re not comparing to what the person was like six months ago. It’s what the person was like last week.

And I mentioned this with the signals, but keeping a log — I’m going to probably bring this up a couple of times. Write things down. If you use technology, maybe an Excel spreadsheet, or your notes app, and if you use any kind of AI, AI can actually put all those patterns together for you. If you try to remember what happened last week — sometimes I can’t remember what happened last week, or three months ago — then you’re not going to be able to keep up with what you need to pay attention to.

Another thing is asking somebody who isn’t around on a day-to-day basis: Have you noticed a change? Do you see a change in that person? That might be an indication that a higher level of care, it’s probably time to talk about.

Being Patient: Why do families often wait too long to have these conversations, and what are the risks of waiting until a crisis happens?

Fosco: That’s probably something, in my 34 years, that I’ve seen over and over and over again. The first thing I want people to hear is the belief that placement equals abandonment — and that’s just absolutely not true. The good spouse, the good son or daughter, the friend — you’ve made this promise years ago that you won’t go into a home, you won’t put me in a home. And there’s this misconception that it’s either stay home or go into a facility or community, and it doesn’t have to be that. Really, what is that? It’s denial. And at the root of denial is love. We deal a lot with guilt, and with denial, and grief. And talking about it out loud can feel like once you open up that door, it’s not going to stop.

Another thing I see often is family members — you’ve got that son or daughter, or the husband or wife, who’s there every single day living with this, and then maybe a sister or brother who comes in on an infrequent basis and isn’t prepared to have that conversation, so they want to just push it off.

I’ve had the opportunity to do a lot of podcasts and articles, and the thing that I think resonates with a lot of the people I talk with is: waiting is not the same as loving, and acting is not the same as giving up. I want people to hold on to that, because you can act — you just have to start small.

“Waiting is not the same as loving, and acting is not the same as giving up.”

Being Patient: Perhaps we should talk about the worst-case scenario. You’ve talked about a 72-hour period, when so many people have to make that decision when they’re not ready to. Please tell us about that.

Fosco: I saw that a lot when I did admissions. What does that mean? You’re caring for somebody, and oftentimes an acute situation happens — a fall that results in a fractured hip, or you have to go into the hospital because of some kind of exacerbated medical situation. 

If you haven’t had the conversation, if you haven’t done that homework, then when you go into the hospital — and you have to consider that hospitals are for throughput — you go into the emergency room, you go into a bed, and right away they’re talking about discharge. That 72-hour decision is because of that throughput: Hospitals want to get you into that next level of care. And if you haven’t taken the time to build a foundation for what might happen in case that urgent situation arises, you’re stuck making a quick, very important decision in a 72-hour window, and you’re not prepared to do that. It puts a lot of pressure on the family. It’s exhausting.

There’s nothing against the discharge planners and social workers who need to do their jobs and get you onto that next level of care, but try to get a foundation built so that you’re not rushed to make that decision. Oftentimes they’re going to give you a list of multiple facilities or communities to consider, and that’s just overwhelming. I’ve seen that happen over and over again.

Being Patient: You have your loved one who is cognitively declining, to different degrees, do you take them to the facility? Because sometimes they’re not ready, and they get scared, and then they resist. So it’s hard to know how much of a partnership you should have, or do you just completely exclude them from that process?

Fosco: It depends on where they are in the progression of their disease. What I’ve seen happen most successfully is if somebody does get that early diagnosis, you can [ease] into the conversation and maybe even frame it so it’s not a decision — what happens as your disease progresses? Again, that’s for somebody who has that early diagnosis and might still be active in the community, still active in what they’re doing, but get them involved, because the most compassionate thing you can do is have that conversation early on, so their voice matters as their disease progresses. They might not be able to speak to what their needs or wants are later on, so you frame it as a conversation, not a decision.

My dad passed away almost 20 years ago. He didn’t have dementia, but he had cancer, and he was put on a ventilator and couldn’t make decisions for himself. He’d had the conversation with me — I was his healthcare power of attorney — and then he developed sepsis. So when it came time to make a very, very difficult decision, I did it under the framework that I knew what he wanted. The same thing can happen with somebody who has dementia or memory loss.

And the other thing is, if you haven’t had that conversation and the person is more advanced in their disease, it doesn’t mean you don’t love that person — it just means you didn’t have that opportunity, and you can still take that. The fact that you’re watching this, that’s an act of love as well. There’s never a time that’s too late. It’s just always putting that person’s needs in mind when you’re making decisions.

“The most compassionate thing you can do is have that conversation early on, so their voice matters as their disease progresses.”

Being Patient: I want to go to a question from John, one of our viewers, he asks: How do you build a foundation to make decisions?

Fosco: I frame the foundation like you’re building a house: If you only build half a foundation and then build the house on top of it, it’s going to fall apart. That’s a broad question, John, because everybody’s situation is going to be a little bit different. But if you know the different types of care that are available — and maybe that’s something we’ll talk about — start small. Maybe somebody needs home care. Maybe somebody needs to go into an assisted living facility. Start small, ask questions, start taking tours, and build what we call a folder. Every place you go to is going to have some kind of brochure, some folder of information. So you start building your own folder. It seems like a lot of work, but you might need to update that folder along the way, because that person’s needs are going to change.

You just start with the basics: What does the person need? Of course, you’ll want to bring in experts to help you with that — make sure you’re talking with their physician, and make sure there’s an external consultant out there called a geriatric care manager. Not a lot of people are familiar with that term. That’s an outside person, typically with a social work background — there’s likely one in your neighborhood — and they’ll come into your home, do an evaluation, make recommendations, and start building that foundation with you. Then you’re not alone.

Now, do you have to go to a geriatric care manager? No, you can do this on your own too — sitting in conversations like this, looking at articles that are out there. You just have to start small. There’s a wealth of information, sometimes too much information, out there. But when you start small and it grows, as long as you’re updating it along the way, you’re going to be in a better position when a decision needs to happen.

Being Patient: Can you discuss the factors in deciding between 24-hour home care versus memory care facilities? And I guess a definition of those terms might be helpful too.

Fosco: Yeah, maybe it would be helpful for me to break down the different types of care that are available. I’ll start at the home and then progressively work my way up.

The things folks can get in their home, I call bridge options. Again, I said this earlier: Often people think it’s either “I have to live at home” or “I have to live in a facility or community. If your goal is to stay at home as long as possible, great — there are options. And getting help doesn’t mean you’re giving up. It means you’re extending your care circle. You’re still going to be in the middle of that with your loved one.

Starting out with home care, there are a couple of different levels that people might not be aware of. The first is personal duty home care — helping someone with activities of daily living, bathing, dressing, or just staying with somebody so the caregiver can go out and do some shopping, knowing that the person isn’t home alone. That’s typically a private-pay service, though some long-term care insurance policies cover it too.

The second is short-term skilled home care, which is often covered by Medicare or private insurance. The intention there is that there’s a medical need — maybe you don’t need to go into a community for physical, occupational or speech therapy after a hip replacement; you can get that at home, and a therapist will come in. You might have wound care or an IV, and a nurse or professional clinician comes in and provides that level of service, but it’s short term.

From there, there’s hospice for somebody who has a terminal diagnosis, or palliative care for somebody who needs pain management. All of those can be received in the home — and when I say home, that could also mean in a community, which I’ll talk about in a minute. You can get those services if you’re in a residential situation too.

One thing I want to mention is adult day care. A lot of people don’t know about it, but especially for somebody with a dementia diagnosis, adult day care can be a life-changer. It allows the person to go out into the community to a center, have structured activities and usually a meal, and it gives a bit of a break to the caregiver as well. If you work with a geriatric care manager, for example, they might say, “You need some home care a couple of days a week — how about some adult day services a couple of days a week too?” And you’re starting to build that foundation with different levels of care.

When you start thinking about communities — residential facilities — you start with independent living and retirement communities. That’s really a lifestyle choice: I no longer want to take care of my home, cut the lawn, do all the things it takes to maintain a house, but I’m going to move into an apartment or a villa, and there’s a community there too, with activities. My in-laws live in a retirement community, and there’s a happy hour every day, and they’re among their friends, and there’s a lot of activities. But that’s a lifestyle choice.

When you get into a bit more of the care needs, you start talking about assisted living — helping with bathing, dressing and all those ADLs I mentioned, with meals provided as well. The community can really provide that support for someone living in an assisted living community, and as needs progress, they can let you know that a person’s dementia or other diagnosis is advancing and that they might want to consider memory care.

Memory care could be a wing within an assisted living community or within a skilled nursing facility. Why is it different? At the end of the day, it has structured activities and specialized staff who know how to work with somebody with a dementia diagnosis and are trained to help that person. Most often, it’s also a secure environment for somebody who might have wandering behavior or some kind of sundowning — that’s a really important piece for people with dementia, and for those caring for somebody with dementia, to consider.

And then, finally, skilled nursing facilities. Everybody calls them a nursing home, but I don’t like to call it that — that’s just the vernacular. There’s short-term rehabilitation, where somebody goes in and returns to the community after physical, occupational or speech therapy. Then there’s long-term care, for somebody needing 24-hour medical, complex care who cannot return to the community.

I know it probably sounds like I’m unloading a lot of information, but at the end of the day there are different funding sources and different things to consider — there are a lot of options, and more than likely a person is going to go through many of them during their situation.

Navigating Medicaid for Dementia Care: What Families Need to Know

“Getting help doesn’t mean you’re giving up. It means you’re extending your care circle.”

Being Patient: Adult day care has been a lifesaver for my own mother, especially having accessible transportation available. But with so many care options out there, it can be overwhelming to evaluate them all. Beyond proximity, what should families look for when choosing a good adult day program or care facility?

Fosco: Yeah, and that’s often how people choose — that 72-hour window, close to my home, the doctor goes there. I know that’s a difficult thing. When I was doing admissions, I loved when families came in to take a tour. There are a couple of different kinds of tours: a scheduled tour, where they call and say they’re going to come at 10 o’clock, or an unscheduled one where they just knock on the door and show up. It’s hard sometimes to see the difference between a really well-run facility or community and one that might not be as good, because from the outside they’re both going to look great — nice landscaping, a nice parking lot, a nice lobby, a warm, welcoming receptionist at the front door, some coffee service. That could be your initial impression. What you need to do is go beyond the front and take those tours.

What you’re going to want to do is watch the residents. How are they interacting with each other? How are they interacting with the staff? When you’re walking through, are the staff stopping to say hello to you? Are they interacting with the residents who are there? That’s a great visual indicator of whether or not that community is going to be a strong one for you to consider.

What I used to like is when the staff were present at all times — not just because we were taking a scheduled tour, but as part of the culture, saying hello and interacting no matter who showed up. You might also want to see beyond a standard room — see the bathroom in the room, or if there’s a shared bathroom in the hallway. If there’s an activity on the calendar, go at that time and see if it’s happening. If you ask for the calendar and the activity isn’t going on, you might ask why. There might be a solid excuse for that, but you’ll start to see the culture of what’s going on within the community. Maybe it’s a mealtime — are they having meals, are residents sitting there waiting, and are they being served? So there are some things to look for visually.

There’s also a whole list of questions you could ask. First and foremost, you might think about staffing. Typically in a community — whether it’s assisted living, memory care or a skilled nursing facility — staff work three shifts: a morning shift, an evening shift, and an overnight shift. Start asking about the ratio of staff members to each resident. There are state laws across the country you can ask about to get a sense of the workload on each shift, so if something happens in the middle of the night, you’re comforted knowing what that ratio will be.

Being Patient: What’s a good ratio?

Fosco: It’s so different depending on the level of care. The lower the ratio the better. 

[Editor’s note: the following is an addition that Fosco added later for clarity and is not included in the video]: Nursing homes have a federal staffing floor. Assisted living and memory care do not. The 2024 nursing home minimums, 3.48 nursing hours per resident per day and an RN on site around the clock, were repealed effective February 2, 2026. States can require more. Illinois, for example, requires 3.8 hours a day for skilled residents.

In assisted living, most states require “sufficient” staff and leave the number to the community.

When touring facilities and communities, look for the real number, not the rule. Medicare’s Care Compare posts a nursing home’s actual staffing hours, its turnover, and its weekend staffing. In assisted living you have to ask for it: the schedule by shift, including nights, and what turnover has been over the past year.

[From the original talk]: The other thing you want to ask about is turnover rates. What’s the turnover rate for nursing aides? How long has the director of nursing been there? I’ve been around many, many great communities over the past 34 years, and I’m always impressed when somebody’s been there for five, 10, 20 years — that tells you something about that organization. People are loyal as employees, and that means you’ve got a really good community behind you. You should also ask what kind of continuing education people get to maintain their license and their level of care, and how often that’s updated. Asking how they handle call-outs is important too. For dementia care specifically, ask how they handle an episode of agitation or aggression — those can happen on a regular basis — and how they handle sundowning. Are residents free to roam safely at night?

I don’t want to throw too many things out there — at the end of the day, I have an appendix in the back of my book with lists of questions to ask based on home care, assisted living and memory care, intended to bring with you as a guide while you’re out taking a tour.

Being Patient: We’ve got a question from Roland — a little trickier one. He writes: We had that early-on conversation discussing dementia directives and memory care. Today, she doesn’t remember that conversation. So what would you recommend I tell her when she transitions in about three weeks? Second, how long should I stay away before my first visit?

Fosco: Yeah, that’s very common, and I’m sorry you’re going through that — it’s a difficult thing to go through. Something I learned when I was 22 years old — I’m a little older now — is that my initial reaction used to be to just answer directly. Somebody would ask, ‘Where’s my husband?’ and I knew he wasn’t there anymore, so my inclination was to say, ‘Oh, he passed away.’ But that puts them through that trauma all over again, and you don’t want to do that. It’s okay to get into their world.

In the situation you’re describing, she’s not going to remember having that conversation with you. So lead with what she told you years ago. There’s also an option called respite care, which I haven’t mentioned yet — it’s a great opportunity to try a community, if they offer it, for a weekend or a week, which also gives the caregiver a break. It gets the person involved in that community and its structured activities, and even though she might not remember it’s a familiar place, it gives her some familiarity, and it lets you get to know the staff. It could be an opportunity for you now that she doesn’t recall having that conversation.

I’d also go back to adult day care — getting her into a structured activity rather than just being at home. I say ‘just being at home’ because that’s often what happens: People aren’t getting that stimulation or that interaction with others. Once you start doing those things, staff can help you and can help make that transition a little easier as well.

Being Patient: I want to make sure to get to another important topic: payment. What are some of the biggest misconceptions families have about paying for long-term dementia care, particularly when it comes to Medicare?

Fosco: Yeah, the number one [misconception] is that Medicare pays for long-term care — that’s just not the case. Medicare is intended to pay for short-term rehabilitation, typically after a hospitalization or an acute care situation, with the intention that the person progresses and returns to the community — whether that’s back to memory care, assisted living, retirement, or home. Medicare does not cover long-term care, and a lot of people think it does.

However, there are options for funding. There are private-pay funds, of course, and long-term care insurance policies — a lot of people don’t know that their mom or dad may have opened one up in their 50s and have been paying into it, and that’s there to cover care needs. You have to look at each policy individually, but it can cover home care, assisted living, memory care and skilled nursing facilities. There are also VA benefits available if you served during wartime.

And, of course, the last one is Medicaid — you have to qualify for it, and each state is a little different with those qualifications, especially if there’s a spouse in the community. So there are funding sources available, but that biggest misconception — that Medicare is going to cover assisted living, that Medicare is going to cover long-term care — just isn’t true.

Being Patient: For a family that knows more care will probably be needed eventually but isn’t there yet, what can they do now to prepare and make that transition easier when the time comes? There are a lot of things, but if you can leave us with some of the most important ones.

Fosco: Yeah, talking for half an hour about this, it can feel like I’m just unloading everything and that this is such a big thing to tackle. Know that you can take it step by step. Whether you’re just starting out or you’ve been at this for a number of years, no matter where you are in your journey, there’s support available out there, and you should have those conversations. Again, a conversation doesn’t mean it’s a decision.

I want to leave everybody with three things. First, as I mentioned, a long-term care insurance policy — if you don’t know whether your loved one has one, have that conversation, or rifle through some files, and find out. Then find out what it covers. My mother, who’s 80 and still out in the community, has a long-term care insurance policy, and a number of years ago she went into a skilled nursing facility. We found out she had something called a 90-day elimination period, which meant she had to pay for 90 days before that policy would kick in. So find out what it covers and whether there are elimination periods — but that policy can be a godsend, so find out if there’s one out there.

Second, get the legal documents in order — the healthcare power of attorney, the financial power of attorney, the living will. The more you have in place, the easier those decisions might be to make, and it can eliminate some of the family conflicts you might otherwise have.

The last thing I’d love for people to do is go out and tour two communities in the next month, or next week — whatever works for you. Go look at two, not in a decision-making capacity if you don’t have to be, but just to take the step of going out, taking those tours, and seeing what it’s like. You’ve got to get the first two out of the way to feel comfortable with the process that’s going to happen.