Communicating with Caregivers

Communicating with caregivers about their role can be challenging. In 2001, the National Family Caregivers Association and the National Alliance for Caregiving conducted focus groups with caregivers to find out what they think about their role. Some highlights of the final report are provided here, and offer some insight into ways to improve communication with caregivers whether you are a healthcare professional, a social worker, or a friend or relative of a caregiver.

• Caregivers focus on their loved one, not on themselves. In general, most caregivers see caregiving as a role they play in relation to their loved one, not something they need to support themselves in doing. Many say they are "putting their own lives on hold" to care for their loved one and will "balance it out" later.

• Many caregivers are hesitant to share duties with other family members. Participants are reluctant to seek help with their caregiving duties — even from other family members — for many reasons. Some feel that no one can care for their loved one as well as they do, and so feel guilty leaving their loved one with anyone else. Others feel they have no one to ask for help, or are waiting for people to volunteer.

• Most caregivers are unfamiliar and uncomfortable with outside services. Participants are especially resistant to the idea of receiving respite services from an outsider. Few were aware that such services are even available, and most assume that they would have to pay someone to provide this service. Many argue that their loved one would not feel comfortable having a stranger care for them. Many say they would not feel comfortable using a respite service to do something "just for themselves," and would only use such services to get things done like shopping or laundry.

• Caregivers are reluctant to discuss their caregiving responsibilities at work. Some of the caregivers have talked with their employers about the affect caregiving has on their work lives, and many have found their employers to be supportive and flexible. However, this is not always the case. Some are reluctant to talk with people at work about their caregiving. A few say they have harmed their careers — or even had to give up jobs — because of their caregiving role.

• Many caregivers are reluctant to talk about — or even speculate on — whether or how caregiving affects their own health. They admit to feeling tired and stressed, but few talk of other effects. Only a handful have talked to a doctor about their caregiving. On the other hand, a few say they have been clinically depressed or physically ill as a result of caregiving.

• Most caregivers, if they are looking for help or advice of any sort, are interested in how they can do a better job as a caregiver or improve their loved one's quality of life. This suggests that the best way to approach caregivers is to start by talking about caregiver resources, ways to help the person for whom they are caring, and improving themselves as caregivers. Then, you can talk about making things better for themselves, focusing on the fact that getting the help and support they need, and taking time for themselves, will make them better caregivers.

Adapted from Family Caregivers Self-Awareness and Empowerment Project Focus Group Report.