Entering your loved one’s world
Q. My brother and I disagree about one aspect of our dad’s care (he was diagnosed with dementia two years ago). Often, he thinks he is somewhere else – his old job, his parents’ house, etc. I play along, but my brother thinks it’s better to bring him back to reality. Who is right?
A. One of the best examples I have ever heard pertaining to this subject was the story of Imogene, an 82-yeard old woman with dementia who was sitting in her chair one morning, sipping a cup of tea and “chatting” pleasantly with an imaginary guest. Her nurse walked into the room and asked, “Who are you talking to?” Smiling, she replied, “Oh, my mother has joined me for breakfast today.” Unfortunately, the nurse sought to bring her patient back to reality by responding: “Imogene, your mother’s dead; you know she could not be having breakfast with you.”
This less-than-empathetic retort caused the woman to burst into tears. The speaker relaying this story commented: “The nurse’s declaration triggered the patient to experience grief as if her mother’s death had just occurred.”
Obviously, this was a terrible way to respond. What would have been a better reaction?
“Oh, I know you are glad to have her visit. Tell me about your conversation.”
Of course, this response has no basis in reality; but the nurse has just entered her patient’s world – which is the only reality a person with dementia knows. Instead of traumatizing the patient, the nurse’s words of affirmation help validate her feelings, which may well be based on an actual event stored in her cinema of remembrance.
Maybe your brother is familiar with “reality orientation,” a program with the purpose of improving cognitive function through aids such as calendars and clocks, and which certainly has its place. In the past, it was often recommended for dealing with dementia patients, assuming that caregivers could and should “reorient” their loved ones to reality.
As more research was done, studies indicated that as dementia progresses, the patient is less able to relate with the “real world.” In many cases, try as you may, reorientation will not succeed because the ability to relate to reality has been lost.
Naomi Feil, a social worker for the elderly, developed a new therapy and in 1982 wrote a book about it: “Validation: The Feil Method.” This model presents a more empathetic and patient-affirming approach. Rather than attempting to bring the dementia patient back to our own reality, the approach is to enter their world. I think it would be helpful if you and your brother took the time to learn more about validation therapy.
In the meantime, consider three actions you should avoid when interacting with your dad: correction, contradiction and confrontation. There will be times you will think these responses are justified; but they may only make the situation worse. Instead, respond with respect and gentleness and a willingness to view your dad’s world from his perspective.