A Caregiver Perspective: Alzheimer's Is a Family Affair — Treatment for Alzheimer's Disease Must Involve the Entire Family
By Carrie Knowles
Alzheimer's disease affects the whole family.
When family members who suspect their loved ones have Alzheimer's make an initial appointment with a physician, they likely have already lived through five to seven years of chaos, confusion, anger, and anxiety. In many cases, they're scared and exhausted.
An individual with Alzheimer's disease typically experiences both good days and bad during the first seven years: memory loss, wide mood swings, and a certain amount of irrational behavior, but nothing that can't be dismissed by family members as their loved one "having a bad day."
Then something happens that can't be ignored. Perhaps the individual gets up in the middle of the night and leaves the house, gets lost, and the police find him blocks away, scared and confused. Another person might leave a burner on the kitchen stove, which leads to a fire. Or one who has always taken care of financial affairs now has unpaid bills piling up.
It's at this point that family members need the physician to confirm what they have been worrying about: Their loved one might have dementia.
In our family, it was a car accident. Our mother no longer knew how to get to the grocery store or make a successful left turn. When it came time for her yearly eye exam, we asked her ophthalmologist to flunk her and help us take the car away. He refused, saying he knew her and thought she was fine. The next weekend, she got into an intersection, forgot which pedal was the brake and which was the gas, and hit an oncoming car. Both cars were badly damaged, but no one was hurt.
From onset of Alzheimer's to death is, on average, 17 years. Since the family members have already lived through five to seven of those years by the time they make an appointment, they face the daunting prospect of 10 to 12 caretaking years ahead.
Caregivers suggest that you, as a medical professional, can better help family members understand the projected course of Alzheimer's and find the support they'll need to cope and manage their lives as well as their loved ones' decline by being more sensitive to their concerns.
When family members call to make an appointment, your receptionist should always ask whether there are concerns regarding dementia. If so, two appointments should be suggested: one for the loved one and one for the family members. Set the two appointments several weeks apart and ask the family members to keep a diary of events that make them suspect dementia.
Let the first visit be with the patient alone.
In general, the patient may be irritated at the family for making the appointment because he or she doesn't believe there is anything wrong. And when you ask whether there are memory problems, the family will often say yes and the patient will say no.
Patients may tell you that their family members are trying to get control of their money by getting them diagnosed as incompetent.
When you meet with the family, review the diary. Sort through what behaviors are consistent with the onset of dementia and which might indicate other problems. Use the diary to help determine what stages of Alzheimer's they have already lived through and what might happen next. Although time consuming, including the family in the conversation will provide an invaluable line of communication for continued caregiving.
Talk through ways of creating a safer environment for their loved ones. If you believe it's warranted, insist that the car be taken away and help develop a strategy to do so.
Have a frank talk about what's ahead and provide reading material about the various stages of Alzheimer's. Supply a list of support services within their communities to help family members cope with what's to come in caring for a loved one.
Designate one staff member to be the family's liaison for support groups, home care professionals, social workers, family counselors, respite care services, and continuum of care facilities.
A diagnosis of dementia or Alzheimer's invariably presents a long, hard road ahead for family members. Listening and connecting are the best services you can provide for caregiving families.
— Carrie Knowles, author of The Last Childhood: A Family Story of Alzheimer's, wrote about her mother's journey through Alzheimer's in order to help caregivers and health care professionals understand the impact of Alzheimer's on the whole family. The author of three other books, she writes a regular column for Psychology Today, "Shifting Forward: A Wanderer's Musings."