I originally wrote this almost a year ago, but I am more convinced than ever that there is a different ethic for communicating with folks suffering from dementia, and that most family caregivers and even professional caregivers do not really understand that.
I continue to be frustrated with Home Care Aide applicants for positions with Support For Home answering questions about how they would handle folks who say they want to go home, when the caregiver knows that the dementia sufferer is where they have actually lived for the last ten years. Telling the client or loved one that they ARE home only creates frustration, fear and distrust. There are a hundred redirection options open to the caregiver. Confrontation with the caregiver’s reality is not one of them. May 31, 2012.
I just read another very good article from “The New Old Age”, in The New York Times, called “White Lies and Worse.” The issue at hand is whether or when it is “OK” for a caregiver to lie to the person for whom they are caring.
The article covers the very sticky subject of just how frank and honest to be with a loved one — a parent, for example — about subjects like driving, cost of medical care (or home care) and a variety of other sensitive topics. It is well worth reading.
Unfortunately, however, the article dismisses a topic that really needs more attention, with the phrase, “Let’s leave aside the kind of pretense that experts actually recommend for those with serious dementia: for instance, the kindness of saying that Dad is on a business trip instead of continually reinforming his widow that he died years ago, causing her grief all over again.”
Unfortunately, many caregivers — even supposedly professional ones — do not really understand this issue. As an owner of a home care company, Support For Home, I encounter far too many family members and even job applicants who feel that it is appropriate to “remind” their parents or their spouses — or their clients — about “reality.”
Too many folks think the appropriate response to someone with dementia saying, “I want to go home, now” is to tell them, “But, you are home!” To the question, “Where is my mother?” the answer too often is, “I’m sorry, but your mother died twenty years ago.”
We honestly have folks come to us for a job, after working for other agencies for ten years, telling us this is how they work with dementia clients. These tend to be very short interviews.
What many family members do not understand is that when a memory is gone, as a result of a disease — some form of dementia — it is GONE. No amount of gentle reminding or photographs or scrapbooks or foolish repeating of “facts” is going to change that. All that will be created is frustration, anxiety, anger and distrust.
Yes, in the absence of dementia, an elder who cannot safely drive any longer deserves the respect of a frank and honest discussion with loved ones and, often, a doctor. But, when dementia is present, there is a different ethic involved that families, friends and people who claim to be professional caregivers need to learn.
Your thoughts? Be frank and honest with me. 🙂
Best wishes. Bert