In the Spotlight

"It Takes Two: Understanding Dementia Behavior" Class Offered by Telephone

by Beth Logan

Caring for a loved one with dementia can be very difficult, especially when you are feeling isolated and alone. Programs like adult day care and hiring in-home care have proven to be very helpful in relieving caregiver "burden," and caregivers can also join support groups or attend educational events that provide them with valuable information and opportunities for bringing pleasure, hope, and new relationships into their lives.

But what about the caregiver who is homebound? What about the caregiver who lives in a geographically isolated community where the closest day care is many miles from her home, or where there are no support services in town? Mountain Caregiver Resource Center, which serves some of the most rural counties in California, recently tried a novel approach to this problem: They offered the class, "It Takes Two: Understanding Dementia Behavior," by telephone. Caregivers didn't even have to leave their homes to receive this 4-week, 2-hours-per-weekly-session training. But they received the same educational intervention and support from professional facilitators and peers as they would have in a face-to-face meeting, and the positive response to this new method was overwhelming.

Only one caregiver believed she would have attended the class if it had been given in a community setting. All others indicated that if it hadn't been offered by telephone, they would not have been able to attend, either because they had no one to stay with the care recipient or they lived too far from town. As one caregiver stated, "I thoroughly enjoyed the friendliness of the group. It was a time during the week when I didn't have to feel so alone."

As a result of this training, the caregivers decided to continue to meet once a month, by telephone, with the Family Consultant from Mountain Caregiver Resource Center. At these monthly conference calls, participants will continue to share resources and ideas for providing the best care for their loved ones and for themselves. Along with support and encouragement, the caregivers who participated in the "It Takes Two" class gained invaluable information to help them provide care. Here's a taste of some "caregiver tips" shared during the class:

  • Set realistic expectations for your loved one. Understanding the disease and the disease process will help you better understand your loved one's capabilities. With this understanding comes the understanding that you, the caregiver, need to grieve over the loss of your loved one as he used to be and allow him to be who he is now. This loss is complicated and ambiguous- the person is still there physically, but not there in the same way emotionally. It's important to hold on to the good memories and what the person still retains, but let go of what he can no longer do or remember. This is the paradox and the challenge of caregiving.
  • Respond to the person's feelings, not her words. When a person tells you stories that are not based on fact, for example, believing that her parents are still alive, believing you are his mother instead of her wife, or saying he wants to go home when he is already in his home, it is best not to disagree with the person or correct him. Instead, pay more attention to what he is feeling, rather than his actual words. It is common for the person to remember her childhood home and feel a longing for that home. Try talking to her about her past, some of the good times that she can remember. Simultaneously, allow the person to feel comforted by you—offer physical touch and eye contact. Remind him with your kind gestures that he is not alone.
  • Dementia behavior is usually triggered. Troubling behavior usually results from a cause; something "triggers" the behavior. If you want to prevent a behavior from occurring again and again, use good communication skills and try a different approach. It is much easier to change our own patterns and behavior than it is to change the person with dementia. Doing the same thing over and over again expecting a different result is the definition of insanity! When you approach the person differently there are opportunities for change in his behavior.
  • And finally, the best way to care for your loved one is to care for yourself. Family caregivers need to recognize that they are in it for the "long haul"-- we are dealing with chronic illnesses here, so you need to pace yourself. In order to stave off caregiver fatigue, you need to put yourself first, or at least keep your own physical, social and spiritual needs in the mix. The best thing you can do for yourself is get some physical exercise, such as taking short walks or participating in a yoga class. Also, plan time with other people who understand and support you. Whatever it takes, you have to believe you are worth it. If you are feeling "the blues" and can't seem to shake it, call your Caregiver Resource Center right away and speak with a trained professional who understands your challenges. Always remember, when you are feeling refreshed and revived, your loved one will also benefit.
If you are a caregiver who is geographically isolated or unable to leave the home, stay tuned for telephone opportunities that will help you learn, grow and stay connected!

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