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6 ways to manage family expectations in dementia care

March 1, 2016
by Nicole Stempak, Senior Editor
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Michael Gill's mom has been vibrant, healthy and independent for most of her life. Then she started saving her receipts, stopped reading the newspaper and worried a tree would fall on her house. 

A neurologist said there was nothing to worry about, but she grew more anxious, isolated and confused. Gill’s mom eventually was diagnosed with probable Alzheimer's dementia.  
The diagnosis gave Gill relief that, after all these years, his mom would finally get the proper care she needed. The diagnosis also brought overwhelming guilt because she would need to live in a memory care facility. 
Gill says his experience wasn't unusual. He hears the same story as president and founder of Texas Senior Living Locators. But, he says, it's unlike anything anyone has experienced before. That motivated him to start his own consulting company after years of working for high finance, hedge funds and as a venture capitalist. 
"The first thing to recognize in this profession is that we families are in the midst of a long journey," says Gill at the inaugural Memory Care Forum in Austin, Texas sponsored by the Institute for the Advancement of Senior Care. "You are catching us just after we have been interacting with a lot of other medical professionals, and not all of those interactions have been good. So you may be catching us while we are not at our best or while we're very stressed out." 
To be sure, there are early signs of withdrawal, anxiety or anger and an initial crisis – a fall or some other event – that causes the family to increase caregiver support or call for a home care agency. But it's not until there's a more serious crisis like a hospitalization or a stint at a skilled nursing facility that the family seriously considers a move to a memory care facility, usually around five to seven years.   
"By the time we have entrusted our loved ones to your professional care, we have already been through the wringer emotionally during which time our caregiver responsibilities have steadily increased," he says. "Here are some of the emotions we've felt: uncertainty, overwhelmed, loss of control, guilt, financial worry, healthcare confusion and feelings of ineptitude."  
Everyone handles the transition differently, but everyone struggles to come to terms with placing their loved one in a memory care facility. Facilities can help to ease the transition by helping the families manage their expectations. The most important thing facilities can do is include loved ones in the decision-making process, notifying or consulting them of changes and, if there's good news, state that upfront, Gill says.   
Six things to remind family caregivers:

No place is perfect  

Neither are the residents. Families seek a facility where all memory care residents only have "pleasant forgetfuls," where there are no problems with behaviors, wheelchairs, wandering or theft. "What I have to remind people is that your parent may come here at a certain level, but they're going to deteriorate. We can't tell when that is, and we can't exactly kick people out of the facility because they have dementia," Gill says. 


Not all one-on-one care 

Loved ones won't receive one-on-one care as they did at home. What's more, there will be falls. "I tell them there will be falls just as there were at home," Gill says.  

Know the staff 

There is large staff turnover. Hourly caregivers earn slightly above minimum wage, but they do the majority of the work. "Family members need to know a lot of those people because you never know who's going to leave, and you never know who you're going to go to for information about your parent," Gill says. 


Advocate for loved ones 

No matter how well intentioned the community, things can happen, and the superiors aren't always aware of—or even that there is—the problem. Family members need to constantly advocate for their loved one, Gill says. 

Family visits are priceless 

These transitions are so difficult for their loved ones, and the makeup of a community will change over time. Family members can provide consistency and help lessen the confusion. 

Luck plays a role 

Sometimes, finding a great facility or having a great experience is all about the timing. "You're given the chance here, with residents and caregivers alike" to shape the experience, Gill says. "One bad experience, particularly early on with the resident, (be it) a fall or something, can color their expectation and beliefs. And so if someone was mean to them, from then on, they're going to think someone is being mean to them."