When it comes to caring for a loved one who is living with dementia or Alzheimer’s disease, it can feel like the caregiver needs reservoirs of patience and understanding. Yet, caregivers have their own lives, their own setbacks and needs, and probably limited supplies of patience and understanding.
One family caregiver recommends following the acronym, CARE. This list is what not to do. Do not:
That is, when someone living with dementia is talking about something that happened 30 years ago as if it’s the present, or insists on something absurd as fact, the nest thing a caregiver can do for themselves is to CARE. There is no advantage to either party when an argument ensues about whether or not one person is right or wrong.
When a family caregiver shared this sentiment on Facebook recently, she received a lot of thanks—and understanding!
“My Mom tried so hard to include my ailing Dad in all decisions,” a family caregiver shared. “So hard on both of them. Learned a lot what and what not to do.”
Another said, “It [arguing] only increases their agitation, it makes you short tempered to argue about little issues.”
One woman heartily agreed that caregivers should avoid arguments with a care recipient living with dementia. “So true!!! Because in the end it is your nerves that are wrecked, and they don’t know why you are agitated.”
Several years ago, experts coined the phrase, “geriatric fiblet” to describe the “necessary” white lies told to elder loved ones to redirect them or keep them calm. In a Psychiatric Times article, Dr. James M. Ellison, MD and Dr. David Hsu, MD, wrote that, “Lies that reduce suffering and stress in patients unable to fully appreciate the cause of distress can be beneficial.”
Or, put another way, “Truth telling does not cure brain disease.”
The Alzheimer’s Association provides a checklist to prevent agitation in someone living with Alzheimer’s disease or dementia: create a calm environment, avoid environmental triggers such as noise, monitor personal comfort, simplify daily life, provide opportunities for exercise. Next, the offer suggestions on how to respond: listen, be reassuring, contact their doctor, engage them in activities, and they say not to argue with them.
Perhaps just follow this advice from a family caregiver who also embraces the CARE philosophy: “You have to agree with whatever they say and that will keep down arguments. If they say the grass is blue say yes.”
Any kind of caregiving is going to require coordinating with other people and entities, such as doctors, therapists, insurance, maybe other family members or non-medical caregivers. This is called coordinated care.
We have created a library of support for family caregivers who may find themselves overwhelmed or confused as the symptoms of Alzheimer's disease.
Caregiving and relationship expert, Barry J. Jacobs, has a new book that focuses on marriage for people a couple of decades into their matrimonial journey.