Memory care isn’t what it used to be. Many families have reached out to me about the appalling care their loved ones living with dementia are receiving.

Even one family going through this is one too many. Families are being bullied to make quick decisions with little information or context, held responsible for things they rightly expect staff should handle – and as a result, feel powerless.

These aren’t unique problems anymore; they’re not a one-time, isolated situation. They’re starting to sound all too common:

  • “They said my mom is a problem and needs to be on medication. They didn’t say what kind of problem – just that she’s the problem.”
  • “I was told my husband hit the caregiver when she went to change him, and now they’re giving us a move-out notice.”
  • “The staff said I have to provide 1:1 care for my dad every day between 3:30 p.m. and 7 p.m., or they’ll put him on medication.”
  • “The staff says they’re afraid of my dad, but they never even talk to him. They avoid him unless he needs assistance, and then they treat him like a piece of furniture. Of course he lashes out – he doesn’t understand!”

Additional Medications Aren’t Always the Answer!

I was – and am – furious. As the granddaughter of five people who died of various forms of dementia, and especially as a former memory care director, I know what it should be like in memory care. This isn’t it.

The staff should be taking care of the residents who live at the facility. After all, memory care residences advertise that they specialize in managing difficult situations. The staff should be creating a calm, happy environment where residents thrive.

Medications such as antipsychotics should be avoided. They’re not only rejected for treatment of dementia, they’re detrimental. The FDA issued “black box” warnings about this 12 years ago!

“Behaviors” Equal Communication

Increasingly, though, more people are taking unnecessary medications because staff is poorly trained or doesn’t understand dementia communication techniques. So-called “behaviors” are simply attempts to communicate.

Rather than thinking of it as “behaviors,” it’s more accurate to think of it as an expression of unmet needs. For a professional, this should be second nature. Our job – literally – is to figure it out.

Should-ing All Over Ourselves

A trend in communities that I’m noticing is attempting to absolve themselves of responsibility, using a “let’s make it the family’s problem” approach.

I’ve been telling families for years now what it should be like. I finally remembered that old Tony Robbins quote: “We can should all over ourselves, but it won’t change a thing.”

Running around telling anyone who’ll listen, “This isn’t how it’s supposed to be!” is a frustrating, worthless pursuit. Worse, it doesn’t help anyone living with dementia or their families.

Your parent or partner lives in memory care for a reason. You need (and deserve!) to be able to sleep soundly through the night and relax at dinner with friends, knowing all is well. We already know should-ing all over ourselves isn’t going to make that happen.

You’ve Got the Power

Having finally conceded the point that shouting warnings isn’t working, I came up with a different idea. What if I started helping family care partners become proactive?

My next post will cover six specific ways to be an effective advocate, working with the staff in memory care. But the first step in effective advocacy is to understand your power.

As a former memory care director, I can tell you that you (the “Responsible Party” in industry jargon) have far more power than you’ve been led to believe. Yes, we’re talking about caring for human beings, but there is still a monthly financial transaction taking place. That means you’re a consumer.

Consumers know they can dispute charges on their Visa, call customer service, “escalate” a complaint, and vote with their feet. All these options are open to you, too. Use them!

Start Here

Titles will vary depending on the specific level of licensing, as well as your state or country, but start with these titles to address your concerns, and work your way through the list as needed:

  • Caregiver or C.N.A.
  • Resident Care Coordinator (RCC) or charge nurse
  • Resident Care Manager (RCM) or Social Services Director (SSD)
  • Director of Nursing Services (DNS or DON)
  • Executive Director (ED), Administrator or Memory Care Director
  • Director of Operations
  • Regional Nurse
  • VP of Operations

Those titles are all within a particular company, but you have other options, too. Call:

  • Office of The Long-Term Care Ombudsman
  • Adult Protective Services
  • The Department of Human Services
  • Area Agency on Aging

Go Public

Don’t forget you’re always free to share your experiences on social media. Leave a rating on Google or post on Facebook after you’ve attempted to resolve a situation. You’ll almost always get further with honey than vinegar, of course.

But sometimes a dash of vinegar (or just the mention of it) helps the powers that be gain quick clarity and extreme focus about what needs to happen to resolve a situation to your satisfaction.

Sixty and Me readers can get a free instant download bundle covering what the pros should know: communication strategies, eliminating arguing and “behavior” management techniques without drugs.

Do you have a friend or family member who is receiving memory care? What has or hasn’t worked? Is there anything you’d do differently, in retrospect? Please share your experiences in the comments below. I love to hear from readers and learn from their experiences and wisdom.

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