National Family Caregivers Association

Friday May 16, 2008

Yes, I Am a Family Caregiver

One of the biggest dilemmas for people in the field of caregiving and for grassroots organizations like NFCA has been how to reach family caregivers. The majority of family caregivers don't self-identify. They don't know that they are caregivers. NFCA, in partnership with the National Alliance for Caregiving, is now engaged in a multi-year project, The Family Caregiver Self-Awareness and Empowerment Project to impact this issue.

In order to augment the work of the project, NFCA commissioned a separate piece of research taking the opposite approach: we wanted to find out why some family caregivers do self-identify - caregivers like you and others who have reached out to NFCA and other caregiver organizations. What caused you to recognize that you are a family caregiver, what impact has that had on your life, and how motivated are you to help make life better for caregiving families?

The results were interesting, informative, and in some cases eye- opening, and show that caregiver self-identification and self-acknowledgement has definite benefits. Some of the results of the survey appear below.

Survey Highlights

The most prominent benefit of self-identification is that caregivers become more proactive about seeking resources and skills they need to assist their care recipient (94% overall). Self-identification (according to 83% of the respondents) also leads to increased confidence when talking to healthcare professionals about their loved one's care.

Almost all respondents (91%), believe "preserving your health" is a message that should be told to all family caregivers. Despite this, self-identification had only "a little" impact on the caregivers seeking resources to help themselves.

In addition, despite the declared importance of taking care of yourself, many respondents saw a decline in their own healthful behaviors. Exercise is the healthy behavior most likely to suffer: only half as many caregivers said they get regular exercise now that they are caregivers than before (30% vs. 61%). Fewer caregivers seek prompt attention from a doctor for their own health problems than did so before they were caregivers (47% vs. 70%).

The vast majority of caregivers say they like the idea of caregivers being considered a special group within the population (92%). Eighty-seven percent of respondents believe caregivers' lives will not improve significantly without legislative action. Twenty-one percent have already written or called a state or national legislator, and 11% have taken part in a local group or coalition seeking legislative change to support caregiving families. An even larger number say they are at least somewhat likely to contact legislators or participate in a local coalition in the future (54% and 63% respectively).

The act of helping their care recipients with personal care contributed "a lot" to their self-identification as a caregiver, according to 75% of respondents. The diagnosis of their loved ones and interaction with the healthcare system are also contributing factors for six out of ten (61% and 59%, respectively) caregivers.

Seventy-eight percent of respondents say that noticing their physical or emotional health was suffering contributed "somewhat" to the realization that they are caregivers. Three quarters indicate reading an article or hearing a presentation about caregiving contributed to the realization they were caregivers.

What Does It All Mean?

It means that to one extent or another caregiver self-identification makes a positive difference in the lives of family caregivers and their loved ones.
It means that family caregivers are concerned first and foremost about their care recipient's well-being. Their own well-being takes a back seat.
It means that the healthcare system is not doing its part in helping prepare family caregivers for their role.
It means that the light bulb of self-awareness is directly related to the seriousness of their loved one's condition and the extent of the caregiving services they provide.
It means that self-identified family caregivers believe that caregiving is an issue that is societal in nature and that legislative action is necessary to make things better - and they are willing to take some actions to make those changes occur.