National Family Caregivers Association

Friday Feb 3, 2012

NFCA's 2001 Survey of Self-Identified Family Caregivers

NFCA is a great believer in the common bonds between all family caregivers, but we also recognize that there are differences between us. We recognize that

caregivers helping a loved one with Alzheimer's disease are dealing with a different set of circumstances than caregivers assisting a loved one who has had a spinal chord injury. We also recognize that there is a difference between family caregivers like you that have reached out to NFCA and other caregiver organizations and people who are providing real care to a loved one but don't recognize that they are family caregivers.

To better understand us, the portion of the family caregiver population that is defined as being self-identified or self-aware, NFCA commissioned a study from The Caregivers Advisory Panel (TCAP), NFCA's Preferred Research Partner to help gain insights into what causes us to recognize that we are family caregivers, what impact has that had on our life, how motivated are we to help make life better for all caregiving families and what has been the nature of our caregiving experience. It is our hope that by gaining a deeper understanding of ourselves as self-identified family caregivers, we will be better able to support and work with the caregiver community to achieve goals while simultaneously having greater success in reaching out to those caregivers that are not yet self-aware.

Survey information was gathered through a two-page questionnaire mailed to 400 family caregivers that volunteered to be part of NFCA's research effort. All survey participants are members of TCAP, the majority are NFCA members too. Two hundred thirty six caregivers responded, a rate of 59%.

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.

Download the complete survey.

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% over all, 64% "a lot," 30% "a little").
Self-identification (according to 83% of the respondents) leads to increased confidence when talking to healthcare professionals about their loved one's care. Forty-seven percent said their self-identification contributed "a lot" to this confidence, while 36 percent said this contributed "a little.
Almost all respondents, (91%) feel "preserving your health" is a message that should be told to all family caregivers. One in five respondents feel it is "a lot" easier to give themselves permission to care for themselves as a result of realizing they are a caregiver (22%). Another 45 percent say it is "a little" easier.
Despite this, self-identification had only "a little' impact on 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%). Most indicate that with this acknowledgment comes the belief that advocacy will make a difference in caregivers' lives
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 percent 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 percent of respondents. The diagnosis of their loved one and interaction with the health care system are also contributing factors for six out of ten (61% and 59%, respectively) caregivers.
Only 43 percent of respondents say that noticing their physical or emotional health was suffering contributed "a lot" to the realization that they are caregivers, while 35% say it contributed "a little." Almost one third indicate reading an article or hearing a presentation about caregiving contributed "a lot" to the realization (33%), while four in ten say in contributed "a little" (42%).

What Does it all Mean?

To one extent or another, caregiver self-identification makes a positive difference in the lives of family caregivers and their loved ones.
We family caregivers are concerned first and foremost about our care recipient's well being. Our own well being takes a back seat.
The healthcare system is not doing its part in helping to prepare us for our caregiving role.
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 we are willing to take some actions to make those changes occur.