Author: Amy Kostelic
Planning Unit: School of Human Environmental Sciences
Major Program: Embracing Life as We Age (general)
Outcome: Initial Outcome
AARP Prepare to Care
AARP Prepare to Care program Success Story
Based on demographic trends, Kentucky needs to plan for a great increase in caregiving. In 2005, 12.5% of Kentucky’s population was reported to be 65+ and by 2030 it is predicted that 19.8% of the Commonwealth’s population will be 65+ (2007 U.S. Census Bureau). Today, over half of Kentucky’s older adults report living with a disability. In addition, there is a growing prevalence of Alzheimer’s disease (AD) and dementia. Currently, an estimated 415,171 caregivers provide help with the various caregiving needs of older Kentuckians. Such care adds up to more than 445 million hours of care valued at over $4.4 million (National eXtension.org, 2009).
AARP recognizes that caregiving is one of the most important roles a person will ever hold. The caregiving journey can be as simple as helping someone run errands or taking them to doctor appointments and it can be as involved as taking time away from work and family to provide full time care that includes paying bills, meal preparation and physical care. As a result, AARP created Prepare to Care: A Resource Guide for Families, to help make caregiving more manageable. The guide emphasizes the importance of planning ahead, rather than waiting for a crisis, as a way to optimize both individual and family preparedness in regard to mental, physical, and financial care. Recognizing that conversations about care can be challenging, the resource guide includes tips for starting necessary conversations in addition to information and checklists about organizing important documents, assessing need and locating resources. It is important to remember that “it is never too early or too late to help your family ‘Prepare to Care’” (AARP, 2012).
In collaboration with Kentucky AARP and the University of Kentucky College of Social Work, 18 agents representing urban, suburban and rural Kentucky counties were recruited to participate. Each agent was asked to recruit, teach and evaluate 15 participants.Face-to-face agent trainings took place in February 2017. Between March-June 2017, 16 agents successfully delivered the Prepare to Care program to a total of 135 participants.
Program effectiveness was measured through the several quantitative measures. Demographic information was obtained by asking questions about age, gender, race, ethnicity, income, education, and marital status. Preparation for caregiving was measured using the 8 item Preparedness for Caregiving Scale (Archbold et al., 1990), a standardized instrument that asks individuals how well prepared they believe they are for multiple domains of caregiving. Two subscales of the Preparation for Future Care Needs instrument (PFCN; Sorensen & Pinquart, 2001) were used: the 4-item “Becoming Aware” subscale and the 4-item “Gathering Information” subscale. Items are answered using a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Knowledge of aging services was measured using a 7-item Likert scale (1 = not at all true of me; 5 = completely true of me) with items such as “I am well-informed about the federal programs for seniors, including Social Security, Medicare, and Medicaid”; α = 0.92 (Sorensen & Pinquart, 2001). An 8-item scale developed by Fowler (2006) was used to measure discussion of care arrangements. This instrument asks participants to report on how much they had discussed with their parent within a range of issues pertaining to future care needs. An additional 8 questions were created to examine participants’ discussions with siblings about their parent’s care needs. Qualitative questions allowed participants to comment about lesson satisfaction, what they learned, and what they planned to do as a result of the program.
In September 2017, three Agent focus groups were conducted—one in central Kentucky, one in the western part of the state, and one online using Zoom. The purpose of the focus groups was to elicit feedback on the feasibility and sustainability of the Prepare to Care program. Ten (10) of the 16 participating extension agents attended a focus group. Focus groups lasted between 40 and 60 minutes.
Significant differences were found between pre- and post-lesson scores. Overall, upon completion of the lesson, 62% of participants reported that they felt “extremely prepared” to initiate a discussion about care arrangements with a family member or friend following the lesson and 52% felt “extremely prepared” to discuss care arrangements. Agents appreciated the program, reporting: “There was good discussion [among] the people who were there. We took the full two hours and some, just because once people were there it was, ‘Okay, this is how it applies to my situation.’ ‘This would have been nice to have had back then’ or ‘Wow I know somebody I can share this with.’ So the content was good and relevant.”
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