By Katherine E. Goethe, PhD, and Martha E. Leatherman, MD

No one wants to face relocation to an assisted living or long-term care facility, and no one wants to be in the position of making such a decision for a loved one. Ultimately, however, most families with elders who have dementia face the same question: How will we know when it’s time to make that move?  

The answer is not simple. Research shows there are a number of reasons that people with dementia must be moved from their homes, but the main reason is the burden that the caregiver perceives. The truth is, while caregiver burden is a concept that everyone can identify with, what constitutes “burden” is different for everyone. What about the person with dementia who is compliant with care but must be diapered, fed, and bathed? Is that person less, or more, of a burden than the person who fights and hits whenever personal care is attempted but is otherwise good natured, eats well, and can hold a conversation?

To complicate matters further, research also reveals that placement of a loved one in a facility really does not reduce the sense of caregiver burden. It seems as if one set of worries is traded for another, whether real or anticipated. If you think that placing your relative in a facility will solve all the problems and eliminate stress, understand that may not be the case—at least not entirely.

So what do you do when you have to think about finding a secure dementia unit for a father who was a world traveler and ran his own successful multimillion-dollar business? Or when you are in the heartbreaking position of providing full-time care for a mother who always cared for you?

Well, you might start by examining Web sites and brochures for long-term care communities. You will likely find key words and terms such as “safe,” “trust,” “compassionate,” “trained, professional staff,” and “around the clock.” When you read these words (as was the marketing intention), you experience a level of cautious relief, easing the transition to the new lifestyle. Messages such as these echo in an extraordinarily powerful way, directly engaging the emotions of desperate families in need of solutions in their time of crisis. However, as comforting as these messages are, anguished families have repeatedly told us that they what they really need is a way to reliably compare the services offered by various facilities.

In looking for ways to compare facility offerings, it is essential to try to separate actual facts and figures from your emotional reaction to a facility. In order to do this, we must first ask ourselves what assisted living really sells. To answer that question, we must recognize that the commodity sold by assisted living facilities and the services sought by consumers might be different. Lovely decor, good food, and a central location might be less important to consumers than a knowledgeable staff.

So what does assisted living really sell? Expertise? Compassionate care? Safety? Wellness? Maybe all of those, but what is really for sale is TRUST. And since families are in crisis and need to believe they have chosen the right facility for a loved one, their expectations are high, and the consequences of misplaced trust can be tragic. How do you respond to the inevitable problems that crop up after the transition to long-term care?