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.”
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.