Understanding the Needs of Family Caregivers in Washington State

Giving Care, Taking Care:  A Conference for Family Caregivers Monday, June 1 Tukwila Community Center   Learn practical caregiving skills and strategies. This full-day training conference allows you to choose from many helpful workshops based on your needs as a caregiver. Call today to receive a full brochure and registration form at 1-800-422-3263 or 360-725-2544.

Providing care for a family member or friend with a long-term illness or disability is an important personal commitment that can provide satisfaction and meaning to both the caregiver and person with disability.  Caregiving can also be time-consuming and stressful, and caregivers may neglect their own health by not seeing a doctor as often as needed or not getting regular screenings such as mammograms or prostate exams.

As the US population ages, it is expected that more Americans will become caregivers. Thus, it is important to have an understanding of who caregivers are, what types of care they are providing, and whether caregiving is having a negative impact on caregivers' health.

In 2005, the Centers for Disease Control and Prevention (CDC) funded research at the University of Florida (UF) to develop a public health plan for understanding caregiving at a population level. Years of caregiving research has provided deep and detailed information about risks and benefits associated with providing care to older adults and to people with specific health conditions like heart disease or dementia, or children with special healthcare needs. However, little information was available about caregivers at a state or national level, including the number of caregivers.

The UF research team worked with national experts and stakeholders to identify aspects of caregiving that could be compared with public health survey data. The researchers used previous surveys and experience to develop a set of questions—the Caregiver Module—for use with the Behavioral Risk Factor Surveillance System (BRFSS).

The BRFSS is a nationwide telephone survey of adults age 18 and older in the US who live in non-institutional community settings. It is supported by the CDC but carried out by states on an annual basis. The BRFSS is designed so that the randomly sampled adults who participate represent the entire adult population of a state. This allows BRFSS data to be used to estimate the percent of adults who engage in specific health behaviors or who have certain health outcomes. For example, the BRFSS can be used to estimate the percent of women in Washington who are overweight, or the percent of Hispanic men age 18-24 who have tried to quit smoking in the past year.

Because the BRFSS is so broad, it is an ideal tool for understanding the health of a specific population. Adding the Caregiver Module to the BRFSS allows public health agencies to determine the number of caregivers in the state, some attributes of the caregiving experience, and the health behaviors and characteristics of caregivers compared to non-caregivers.

In 2007, Washington state included an eighteen-question Caregiver Module as part of the annual BRFSS telephone survey. Data from this survey are now available, and the state Aging and Disability Services Administration has already used this data to inform and educate the public and policymakers about caregivers in Washington.

Who are Washington's caregivers?

• 15 % of adults (700,000 people) in Washington State are caring for a family member or friend.
• Most of these were providing care for a parent (36%) or friend (21%). 
• On average, caregivers were 48 years old and caring for someone age 62.

How much care are they providing?

• Nearly half (48%) spent 0-8 hours in an average week providing care, and one in four (25%) said they spent 40 hours or more per week as a caregiver. 
• Almost one in three (31%) caregivers reported the person they cared for had a problem with memory loss or confusion.

What are their challenges and needs?

• Stress was the most common difficulty caregivers said they faced (by 40% of caregivers who reported any difficulty), although 31% of caregivers said they faced no difficulties in caregiving. 
• When asked what services they needed, caregivers most often said they needed more information about local programs (26%) and money for supplies and equipment (21%).

How is their health impacted?

• Compared to adults who were not caregivers, caregivers were more likely to smoke and be classified as overweight or obese (worse health outcomes and health behaviors), but more likely to eat five or more servings of fruits and vegetables per day (a positive health behavior). 
• Caregivers also were more likely to have a disability themselves, compared to non-caregivers. 

Washington state also used the BRFSS to learn more about "kinship caregivers"—someone caring for a child who is not their own, such as a grandparent raising a grandchild.  According to the survey, 1% of Washington adults identified themselves as kinship caregivers. Though this is a small percentage, it represents approximately 67,000 Washingtonians.

Kinship caregivers differed from other types of informal caregivers in several ways:

• Kinship caregivers were younger, had lower levels of education, were more likely to be obese, and were more likely to be the primary caregiver compared to other caregivers. 
• More than half of kinship caregivers (52%) provided 40 hours or more of care per week. 
• Kinship caregivers most commonly reported they needed money (47%) and information about programs and services (28%).

Informal caregivers are an important part of the health care and aging infrastructure in the United States. The care they provide enables older adults and people with disabilities to remain in their own homes and communities, and the health and well-being of caregivers must be supported if they are to continue in this vital role.  Learning more about who they are and what needs they have will help us develop policies and programs that provide these necessary supports. Collecting population-based information, as was done using Washington's 2007 BRFSS, is a step to understanding and supporting caregivers.

• For more information about the Washington BRFSS, visit their website.
  
  
• See also "Caregiver Health in Washington: Results from the 2007 BRFSS," a presentation by Elena Andresen, PhD, Erin DeFries Bouldin, MPH, and Katrina Wynkoop Simmons, PhD.  February 2009.

Authors: Hilari Hauptman, Washington Aging and Disability Services Administration,Katrina Wynkoop Simmons, Washington Department of Health, and Erin DeFries Bouldin and Elena Andresen, University of Florida