Understanding the Patient, Wellness, and Caregiving Work of Older Adults

Abigail R. Wooldridge and Wendy A. Rogers

University of Illinois at Urbana-Champaign

Patient work has been conceptualized very broadly to include any effortful activities in pursuit of health-related goals, which includes activities related to social determinants of health (Holden et al., 2020). Therefore, patient work for older adults can be conceptualized as the work an older person has to engage in to maximize their health. However, older adults participate in many facets of everyday activities to maintain their own wellness, including enhancing their quality of life and supporting their social well-being. Further, older adults may act as caregivers for others, a specific subtype of patient work. Therefore, in this chapter we consider three distinct types of work that older adults engage in to maximize their health:

  • • Patient work, activities directly tied to managing specific health conditions, including coordinating their own care network.
  • • Wellness work, activities directly tied to obtaining or enhancing social support, increasing social engagement, and improving quality of life.
  • • Caregiving work, activities directly tied to managing health conditions, coordinating care networks, and supporting wellness of another individual.

Specifying these three categories of work allows us to explore distinct challenges older adults face and potential solutions that vary between these types of work. Further, the term “patient” in patient work emphasizes work that is done explicitly when one is experiencing effects of a specific condition; our conceptualization of wellness work supports the idea that activities can be proactive, not tied to a specific illness or condition, and support a healthy social life in addition to physical and mental health (Mitzner et al., 2013). In addition, older adults are frequently caring for others as well as themselves, which encompasses different work activities (National Alliance for Caregiving (NAC) & AARP Public Policy Institute, 2015).

Consider a day in the life of a fictitious—but representative—couple, Justin and Nicki. Justin is a 78-year-old male with diabetes and multiple comorbidities (hypertension, insomnia) who was recently hospitalized due to a foot amputation. He has just transitioned back home in his rural community. He lives with his wife Nicki, age 76, who is his primary caregiver. She is a breast cancer survivor who is experiencing some social isolation due to the increasing demands on her as Justin’s caregiver. Figure 9.1 presents a snapshot of their morning routine—how it should progress ideally, and how it often progresses in reality.

Snapshot of a morning routine for Justin and Nicki. This includes both the ideal routine and how it often actually occurs

FIGURE 9.1 Snapshot of a morning routine for Justin and Nicki. This includes both the ideal routine and how it often actually occurs.

The complexities in this case study are myriad and illustrate the components of patient, wellness, and caregiving work. Justin is dealing with multimorbidity (i.e. managing multiple chronic conditions at once), which increases his patient workload. He has to manage his diabetes, insomnia, hypertension, and related medications; maintain his personal hygiene; come to terms with the loss of his right foot, and what that means for his future mobility; and cope with his increased reliance on his wife to support his health needs. For her part, Nicki has to manage her own patient work as a cancer survivor, e.g. medications (maintenance therapy for her cancer); perform caregiving work to coordinate care for Justin and help him as needed; and engage in wellness work to maintain her social support network to reduce her caregiver stress. As a couple, they have shared goals of supporting one another and maintaining their independent lifestyle in the home they built together 45 years ago in the rural community they love. Their two children have moved away, one across the state and one across the country. As such, the support they can provide is quite limited.

Patient, Wellness, and Caregiving Work of Older Adults

Our case study of Justin and Nicki demonstrates the components of patient, wellness, and caregiving work considered in this chapter. These activities include care coordination, shared decision-making, use of technology, transportation, managing comorbidities, home maintenance (and perhaps remodeling for aging-in-place), addressing sleep challenges, preventing social isolation, and interacting with and coordinating home healthcare providers. This list is not exhaustive but it is illustrative of the variety of work tasks.

Moreover, there are well-documented age-related changes in sensory (e.g. vision, hearing), cognitive (e.g. working memory, processing speed), motor control (e.g. grip strength, movement precision) that may make these work tasks more challenging. Consequently, the older adult experience is unique from others who may have similar health diagnoses, wellness goals, and caregiving responsibilities.

All of the earlier highlighted activities have ergonomic aspects—perceptual, cognitive, physical, and organizational (see Volume I of this handbook). Cognitive ergonomics considers the cognitive abilities of humans including mental processes such as perception, memory, reasoning, and motor response. Physical ergonomics focuses on human anatomy, physiology, anthropometry, and biomechanics. Organizational ergonomics focuses on the optimization of sociotechnical systems, including the interactions between the people, tasks, tools, and environment. Our goal in this chapter is to provide an organizing framework to characterize the needs of older adults, emphasizing that multiple components and interactions between these components must be considered in the context of human factors/ergonomics (HFE) practice. We provide a general overview of older adult needs, illustrating the diversity of older adults. We then discuss the three types of work—patient, wellness, and caregiving— to provide a conceptual grounding for our framework, which we will detail in the context of older adults in the home and in formal care settings to demonstrate the range of challenges. Approaches to developing solutions include user-centered design and participatory design, which we illustrate with examples. We conclude with recommendations for future research and development efforts that can support patient, wellness, and caregiving work of older adults.

Understanding the Health Needs of Older Adults

Shifting Demographics of Older Adults

The demographics of the United States are changing quite dramatically. In 2000, the largest percentage of the population comprised middle-aged adults, and age groups older than 54 were dramatically smaller in size than younger age groups (Centers for Medicare and Medicaid Services [CMS], 2016). By 2030, however, the U.S. Census projects that the distribution of individuals among age groups will be more similar across age ranges until age 74. According to the Administration on Aging (2017), over one in every seven (15.2%) individuals living in the United States is over age 65, and older women outnumber older men (27.5 million to 21.8 million, respectively). Moreover, older adults are ethnically and racially diverse, with racial and ethnic minority populations projected to continue to increase from 11.1 million in 2016 to

21.1 million in 2030 (Administration on Aging, 2017). In 2016, 9% of older adults identified as African-Americans, 4% as Asian or Pacific Islander, 0.5% as Native American, 0.1% Native Hawaiian/Pacific Islander, and 0.7% as belonging to two or more races. Moreover, 8% of the older adult population were of Hispanic origin. This increase in diversity may result in varied personal and family/caregiver preferences, increased need for language translation, changes to provide services in a culturally sensitive way (Administration on Aging, 2017). Given the well-documented ethnic and racial disparities in health (Good et al., 2005), the rapid increase in demographic diversity of older adults makes addressing health inequity particularly important.

Living Arrangements of Older Adults

Although these trends may be changing, many older adults prefer to “age-in-place,” to remain in their own homes for as long as they are able to take care of themselves (e.g. American Association Retired Persons [AARP], 2005, 2018; Shafer, 2000). The U.S. housing data suggest that the majority of older adults are indeed achieving this goal; nearly 80% of older adults live independently in their own homes (Houser et al., 2006; Joint Center for Housing Studies, 2018). Most live in private homes with a spouse; however, many live alone (approximately 30%) with close to 50% of women aged 75 and older living alone. Older adults living at home vary in their functional abilities and many receive assistance with everyday activities (Mitzner et al., 2014).

From a societal perspective, it is cost-effective to support aging-in-place. The median annual cost of a home health aide providing care at home is $33,540, whereas the median annual cost for a private room in a nursing facility is nearly $97,500 (Houser et al., 2018). Private residential living costs are estimated to be only 55% of the costs of full-time residential care (Tang & Venables, 2000). The burden and hardships of health care and aging are particularly high for those who have limited financial resources and limited family and community support (Felland et al., 2004).

In 2016, 37% of older adults lived below 250% of poverty level, i.e. with an income of less than $29,700 for one person or less than $40,050 for a family of two (Houser et al., 2018).

Health of Older Adults

Based on a cross-sectional survey, McLaughlin et al. (2012) estimated that only ~3% of older adults experience healthy aging as defined by Rowe and Kahn (1997), namely complete maintenance of physical and mental functioning, and avoidance of disease and disability. Indeed, the common experience of aging is managing conditions, diseases, and risk factors, yet hoping to age-in-place safely with intact autonomy. Healthcare value should be increased when older adults can safely and successfully age in their place of choice, reduce unintended care such as unnecessary emergency room visits and hospitalizations, and satisfactorily manage their chronic conditions at home, which for many enhances quality of life.

Two-thirds of older adults have diseases or risk factors (e.g. obesity, hypertension) requiring medications, procedures, surgeries, rehabilitative therapy, or resulting in functional limitations (McLaughlin et al., 2012). With longer life expectancy, the lifetime risk of a chronic condition increases (CMS, 2016); older adults are affected at higher rates than younger populations by: hypertension (55%), hyperlipidemia (45%), arthritis (29%), ischemic heart disease (27%), diabetes (27%), chronic kidney disease (CKD; 17%), depression (16%), heart failure (14%), and chronic obstructive pulmonary disorder (COPD; 11%). Having multiple chronic conditions impacts all aspects of healthcare outcomes, including medication management burden, recovery time, and hospital readmission (American Geriatrics Society [AGS] Expert Panel on the Care of Older Adults with Multimorbidity, 2012; Bayliss et al., 2014).

Older adults are increasingly asked to engage in health self-management that may involve the following activities: medication and diet adherence, exercise; use of medical devices and technologies (e.g. activity monitor, blood glucose meter); and interaction with the formal healthcare system, including hospitals, clinics, and specialists (Mitzner et al., 2013) (see also Volume I of this handbook). Comorbidities present special challenges related to overall increased number of tasks or discordant management tasks. For example, an older adult who has congestive heart failure and chronic kidney disease must navigate contradictory recommendations to restrict fluid intake, as part of managing their heart failure, and to drink plenty of water, as part of managing their kidney disease. This issue of navigating conflicting recommendations is not by any means unique to older adults, but it is a more prevalent concern in this population as older adults are more likely to manage multimorbidity (AGS Expert Panel on the Care of Older Adults with Multimorbidity, 2012; Bayliss et al., 2014).

Multiple clinicians may be involved in managing the health care of one older adult, particularly with the increased prevalence of multimorbidity, including geriatricians, internists, and specialists (e.g. nephrologists, endocrinologists, cardiologists) (National Research Council, 2011). Healthcare professionals providing care through home visits include nurses, rehabilitation therapists, and home health aides.

Older adults visiting emergency rooms and urgent care centers encounter additional providers who are not privy to their coordinated treatment plan. The large care network also includes family members and other informal caregivers.

At the care network’s center is the older adult, who herself or himself plays a crucial role in the success of interventions and treatment plans. Yet older individuals are likely to experience sensory, cognitive, and motor changes that influence their capacity for understanding the complexity of the tasks facing them (see Czaja et al., 2019 for a review). The CREATE sociotechnical framework depicted in Figure 9.2 illustrates the factors that influence everyday activity in various domains, including health care.

The myriad patient work associated with self-management involves interactions of multimorbidity, medication management, use of technology, information requirements, and needs for coordination within the care network. An individual’s ability to cope with work demands is one factor that determines success of self-management and can be characterized by their physical, sensory, cognitive, and social capabilities, or resources (Czaja et al., 2019). Forces in the environment place demands on individuals that may be physical, intellectual, or social in nature. If an individual’s level of resources does not match the work and environmental demands, then maladaptive behavior may result, such as depression, increased levels of stress, and burnout. Patient work demands, just like demands of any other work, have the potential to exceed an individual’s abilities, perhaps especially for persons with multimorbidity (Bayliss et al., 2014).

CREATE sociotechnical model of design for older adults. (Reprinted with permission from Czaja et al., 2019.)

FIGURE 9.2 CREATE sociotechnical model of design for older adults. (Reprinted with permission from Czaja et al., 2019.)

Technology to Support the Health of Older Adults

Technology has the potential to address both quality of life and cost containment, but currently falls short of addressing these challenges (see Volume I of this handbook). Some current technologies are not integrated in the processes and work- flows of older adults and clinicians, resulting in duplicate effort, whereas others are inflexible, rendering them ineffective for diverse users. Innovative technologies may not be fully scalable for widespread use or disease-specific and not applicable beyond a small subset of potential users. Moreover, older adults with existing disabilities face challenges in utilizing technologies that may be unintentionally inaccessible to older adults with mobility, cognitive, vision, and hearing impairments (Harrington et al„ 2015).

The growing trend of hospital-at-home programs, which care for certain acute medical conditions through monitoring and daily nursing and clinician visits, could potentially benefit from within-home monitoring given the enhancements in their efficiency (e.g. www.hospitalathome.org). In addition, technology innovations are fragmented, not validated with target older adult populations, and not integrated into either the healthcare ecology or the home itself (Sanford, 2010). When telehealth and home-based programs are implemented the technologies may be inflexible, unreliable, and unsustainable (Charness et al., 2011). Even well-designed products may fail because of insufficient attention paid to policy, acceptance, and ethical issues such as privacy (Hudson, 2014). Healthcare technologies are increasing at a rapid pace and older adults are expected to be able to integrate them into their daily health regimens. Societal needs for technologic facilitators of successful aging in place require an evidence-based system that is integrated, validated, deployed in context, tested with stakeholders, valuable for various chronic conditions and multimorbidity, and that can be scaled up to accommodate the needs of a rapidly increasing older adult population.

The potential for technology to support older adults’ healthcare needs is illustrated in the TechSAge Technology Intervention Model (Figure 9.3; Mitzner et al., 2018). This model illustrates how age-related capacity limitations due to impairment and age-related changes can lead to functional disabilities that limit activity and participation if the context is not supportive. Well-designed technology interventions can change the barriers into facilitators, thereby increasing successful performance and hence activity and participation. For example, consider the case of Justin and Nicki. The blood glucose meter is a technology intended to support Nicki in her caregiving work and Justin in his patient work. However, the buttons give minimal feedback, and the text on the screen is too small to read. Thus, it becomes a barrier for effective use by older adults with reduced dexterity and visual acuity. An age-appropriate design could change that barrier into a facilitator. Alternatively, consider Justin’s reduced mobility, a combination of age-related osteoarthritis and a leg amputation. His two-story farmhouse has become a barrier for navigation but a stair-lift in his home would mitigate that disability.

The TechSAge Technology Intervention Model illustrates the value of a technology intervention

FIGURE 9.3 The TechSAge Technology Intervention Model illustrates the value of a technology intervention. The top row illustrates individuals aging with a pre-existing impairment. Their reduced capacity results in contextual facilitators becoming barriers (symbolized by Fs transitioning to Bs in figure) and hence more disability. The bottom row illustrates how a technology intervention can turn the barriers (Bs) back into facilitators (Fs), which yields more performance that is successful. (Reprinted with permission from Mitzner, Sanford, and Rogers, 2018.)

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