Indiana University-Purdue University Indianapolis (IUPUI) / As healthcare increasingly shifts to home and community-based settings, informal caregiver responsibilities are increasing beyond assistance with activities of daily living to include complex care procedures previously performed by licensed caregivers in clinical settings. With an aging population, increasing numbers of older adults are assuming a caregiving role, a trend that is projected to continue into the foreseeable future. These older caregivers performing complex care procedures such as wound care. The purpose of this dissertation study was to understand how older adult caregivers manage complex wound care procedures. Aims were to 1) develop a theory for how caregivers manage; 2) identify themes related to resources needed, and 3) determine resources available through the existing Medicaid 1915(c) waivers program. Aims 1 and 2 were achieved using qualitative analysis of interviews with 18 older adult caregivers aged 65 and older who were performing wound care in the home for a care recipient. Grounded theory methods were used to develop a theoretical framework describing the process of how the participants managed caregiving. The resultant theory, Pushing Through, consisted of five phases: 1) accepting the role, 2) lacking confidence, 3) creating a system, 4) trusting in self, 5) owning the outcomes. Secondary analysis of the interview data used thematic analysis methods to identify resources used or needed for the caregiver role. The resultant themes were (a) connection to a healthcare professional, (b) written instructions, (c) access to wound care supplies, (d) access to durable medical equipment, (e) financial resources, (f) personal care coverage, and (g) socialization and emotional support. Aim 3 used descriptive analysis of Medicaid 1915(c) home- and community-based services waivers for adults aged 65 and older for all 50 states plus the District of Columbia to identify the frequency and type of waiver services available for supporting caregivers. Results revealed that the number of services offered by state Medicaid waiver programs varied greatly across the country. Respite in varying forms was the most frequently available service. Findings from this dissertation will contribute to the development of evidence-based strategies to sustain older adult caregivers within their caregiving role.

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Aside from a change in their physical environment from home to a long-term care facility, most clients with dementia in a long-term care (LTC) setting experience an advanced level of degenerative change in both cognitive and body functions, which leads to increasing challenges in engagement in occupation. To analyze their occupational performance, establish therapy goals, and measure the outcomes of intervention, occupational therapy practitioners use assessment tools in the therapy process (American Occupational Therapy Association [AOTA], 2014). However, there is the significant mismatch between existing assessment tools and the clinical need to properly capture functional progress in residents with dementia in a LTC setting. Therefore, this project introduces the FPM-D, which was specifically designed for residents with moderate to moderately severe dementia in LTC facilities. To maximize the usefulness of this new instrument, the author reviewed previous attempts made to address the need and obtained feedback from current occupational therapy practitioners in this setting. This new assessment tool is 1) designed to assess the function of clients with dementia; 2) has a progress-tracking feature with different timelines; 3) takes less than 15 minutes for administration; 4) allows customization of target activities, 5) includes only items appropriate for a LTC setting; and 6) assesses both cognitive and physical aspects of function based on the Cognitive Model in occupational therapy practice (Lazzarini, 2005). Along with the development process, this project includes plans for evaluation and dissemination. The follow-up study for evaluation aims to investigate the usefulness of the instrument in the LTC clinical setting and dissemination activities focus on disseminating this innovation in occupational therapy practice. The author believes that this new instrument will make a positive contribution to the quality of occupational therapy services in LTC facilities by effectively meeting the clinical needs of residents with dementia.

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