What Your Care Clients Want You to Know: Read Insights from Actual Customers

It’s a safe bet that many of us in long-term care want to improve the quality of the aging care experience for clients and residents. In fact, in a CareScout survey of 100 long-term care providers, nearly all respondents said that long-term care needs to change and that person-centered care points the way. 

Clients want a better, more person-centered experience, too—even if they don’t call that experience “person-centered care.” And they have some very helpful insights into what that experience should include. As part of our efforts to support long-term care providers in improving the quality of care, CareScout recently convened a consumer panel to hear directly from clients about their care experiences. Here’s what our panelists said they wanted providers to know. 

Making sure a caregiver can meet a client’s needs may seem obvious, but it can be missed in some very big ways. Example: At age 93, Bill’s mother was showing early signs of dementia and needed daily care. She lived alone and it was no longer safe for her to drive herself anywhere. However, his mother still took part in many activities outside the home. “She was still doing yoga, taking art classes, taking Tai Chi, and going to doctor's appointments,” said Bill. 

But the home care company sent his mother a caregiver who didn’t drive. “Without having a driver, and we didn't really want my mother to drive, we had to fire that company,” Bill said. The second company he worked with sent a caregiver who could drive as well as provide 24/7 care, so Bill’s mother was once again able to get out and about. She lived to be 101. 

It happens. A caregiver calls out sick, or they leave and you have to juggle staff while hiring a permanent replacement. It’s disruptive to you—but it’s also disruptive to the client. They see it as strangers coming into the home, and having a backup caregiver who doesn’t know you can have a significant negative impact on continuity of care. 

Barbara was named financial power of attorney for a friend who had brain cancer. As his illness progressed, her friend became unable to communicate. Whenever one of his regular caregivers called out sick, the agency would send a substitute neither Barbara nor her friend had met before, and it was like starting over.  

“Many times it happened where somebody would just show up that we never had talked to,” Barbara said. “It was very limited because he couldn't communicate.” This made a difficult situation even harder. “That was another roadblock,” said Barbara. 

Bill, who oversaw his mother’s care for eight years, also experienced problems with substitutes. “The main caregiver was very good, but the substitutes were horrendous,” he said. They would spend more time on their cell phones than with his mother, said Bill. They wouldn’t cook or clean. “They were neglectful,” he said.  

That created a huge problem for Bill, who lived 350 miles from his mother. “It was a 90-minute flight or seven-hour drive,” he recalled. “I'd have to go out there every time there was a substitute because if I didn't, my mother would have died probably literally during that period of time.”  

What would clients like to see? Barbara said it could be a big improvement if, instead of assigning a single caregiver at the outset, agencies could introduce a team that included the lead caregiver and any potential substitutes to the care recipient and their care circle. “That way, if you need a backup, then it's not some person coming in who you've never met,” she said. 

Elizabeth’s experience finding care for her mother was very positive—despite the need arising suddenly. “Her doctor just decided that she needed to have assisted living,” said Elizabeth. “So just being called out of the blue, we didn't know which way to go.” 

However, after visiting several centers, she and her mother found one they liked and never looked back. “She was able to really thrive and adjusted well in the setting we found for her,” Elizabeth said. 

What made this provider great? “It was something about the atmosphere there and that they cared about and nurtured the residents,” said Elizabeth. “And they were all treated with dignity and respect.” 

She also appreciated that her family was able to stay involved in her mother’s care, Elizabeth noted. “There was a team approach and we regularly met with each staff member that had a certain portion of her care. And so we were always informed as to what was going on.”   

Joseph has been an insurance broker for 35 years and sells long-term care insurance coverage. However, after suffering a bad fall while on vacation, he found himself on the receiving end of care when he needed a wheelchair for several months. 

Despite his industry know-how, Joseph’s first foray into finding a caregiver didn’t go very well. His caregiver “basically occupied space,” Joseph said. “She was on her phone and it clearly was not an appropriate level of care. She had something other than taking care of me top of her mind.” 

So Joseph and his wife left that agency. “We were able to get another caregiver from another company who turned out to be a blessing,” Joseph said. This caregiver went above and beyond. “My wife comments that as soon as dinner was finished, he was mopping the floor.” 

The “blessing” was about more than doing chores, though. “His attitude was very positive,” Joseph said. “He was energetic. He was compassionate. He was all the things that you really want a caregiver to be. He stayed with us for a few months, but I would have been happy if he stayed with us for a year.” 

What does Joseph want providers to know? “When you are in need of help and you lose your independence, there's a very visceral reaction to that,” he said. “And when you have someone helping you who has empathy, has a positive attitude, makes you feel better, just talking or helping, being kind, polite … it's a world of difference, absolutely a world of difference.” 

Providing caregivers who can address clients’ needs and preferences, making sure substitute caregivers are empowered to do the same, treating clients with respect, empathy, and compassion, and keeping a client’s care circle informed and directly involved in their care—all fall under the person-centered model of care. CareScout is focused on making person-centered care part of the standard for quality in long-term care, and ultimately to support an aging experience that is dignified, connected, and fulfilling. 

It's what clients tell us they want. Let’s show them we’re listening.

This article is part of a three-part series created from our Consumer Voices panel discussion. Read the other articles:

• 10 Tips from the Long-Term Care Trenches

• Even LTC Pros Have Trouble Navigating the System