Research in Gerontological Nursing

Empirical Research 

Experiences Surrounding an Early-Stage Cognitive Diagnosis in Rural-Dwelling Older Adults

Meghan K. Mattos, PhD, RN, CNL; Marci L. Nilsen, PhD, RN; Jennifer H. Lingler, PhD, CRNP

Abstract

Misdiagnosis, lack of specialists, and patient dismissal of symptoms can contribute to delayed detection of early cognitive impairment. Understanding patient perspectives during and around time of cognitive diagnosis is crucial, as reactions to diagnosis can impact disease management and overall health. The current study conducted semi-structured interviews to explore the experiences of rural-dwelling older adults (n = 9) and their caregivers (n = 10) surrounding diagnosis of mild cognitive impairment or early-stage Alzheimer's disease at a specialty research center (SRC). Content analysis was performed. Overall, researchers found that older adult participants experienced various cognitive symptoms pre-diagnosis and dyads experienced diagnostic uncertainty prior to the SRC visit. All individuals displayed a range of reactive and information-seeking actions. Nurses play significant roles in the diagnostic and post-diagnostic periods for patients with early-stage cognitive impairment, and clinical diagnostic expertise, appropriate and timely direction of resources, and identification and targeting of early interventions to promote cognitive health are particularly important to this underserved population.

[Res Gerontol Nurs. 2018; 11(4):181–189.]

Abstract

Misdiagnosis, lack of specialists, and patient dismissal of symptoms can contribute to delayed detection of early cognitive impairment. Understanding patient perspectives during and around time of cognitive diagnosis is crucial, as reactions to diagnosis can impact disease management and overall health. The current study conducted semi-structured interviews to explore the experiences of rural-dwelling older adults (n = 9) and their caregivers (n = 10) surrounding diagnosis of mild cognitive impairment or early-stage Alzheimer's disease at a specialty research center (SRC). Content analysis was performed. Overall, researchers found that older adult participants experienced various cognitive symptoms pre-diagnosis and dyads experienced diagnostic uncertainty prior to the SRC visit. All individuals displayed a range of reactive and information-seeking actions. Nurses play significant roles in the diagnostic and post-diagnostic periods for patients with early-stage cognitive impairment, and clinical diagnostic expertise, appropriate and timely direction of resources, and identification and targeting of early interventions to promote cognitive health are particularly important to this underserved population.

[Res Gerontol Nurs. 2018; 11(4):181–189.]

Misdiagnosis, lack of specialists, and patient dismissal of symptoms can contribute to delayed detection of early cognitive impairment. Compounding these issues, it can be difficult for primary care providers to identify or diagnose cognitive disorders, especially at early stages (Kotagal et al., 2015). Delayed detection of dementia may lead to increased patient and caregiver burden over time and lost opportunity to seek treatment for modifiable risk factors or conditions contributing to cognitive health.

Mild cognitive impairment (MCI) and mild Alzheimer's disease (AD) are recognized as early-stage cognitive disorders. Many patients with MCI or mild AD are able to live independently and perform instrumental activities of daily living (Petersen, 2004; Sperling et al., 2011). Early cognitive symptoms associated with these disorders may go unnoticed by patients, family, friends, and even health care professionals for various reasons, including the patient's ability to compensate for changes and the potential for changes to be overlooked or viewed as a normal part of aging (Peacock, Hammond-Collins, & Forbes, 2014; Rajan, Wilson, Weuve, Barnes, & Evans, 2015; Teel & Carson, 2003). Although numerous barriers exist, recognizing worsening cognitive symptoms and seeking specialty health care can have a positive impact on overall health and disease management. Understanding the experiences of patients and families who overcome such barriers could provide important insights for nurses and other clinicians to promote early detection and diagnosis of cognitive disorders. However, a gap remains in the literature regarding patients' and caregivers' perspectives during and around the time of cognitive diagnosis, especially in underrepresented populations.

The current study focuses on rural-dwelling older adults with early-stage cognitive impairment. Rural-dwelling adults live in less populous, non-metropolitan areas, typically defined at the ZIP code or census tract level (Health Resources & Services Administration, 2017; United States Department of Agriculture [USDA] Economic Research Service, 2013). These adults may face additional, unique barriers to undergoing timely cognitive evaluations and accessing care delivery, and have been shown to underuse medical and social services (Bradford, Kunik, Schulz, Williams, & Singh, 2009). There are also fewer rural-dwelling health care providers (Doescher, Andrilla, Skillman, Morgan, & Kaplan, 2014; Gamm, Hutchison, Bellamy, & Dabney, 2010) and limited resources in rural areas (Gamm et al., 2010), further emphasizing the importance of early detection of cognitive changes in this population.

Limited research exists on the experiences surrounding early cognitive diagnoses, and data are particularly lacking in rural-dwelling older adults. Patients' and family members' descriptions of experiences and feelings during the time of and surrounding diagnosis may help interprofessional health care teams, including nurses, provide targeted, population-specific care and services during critical times of cognitive change. Previous studies have found that inclusion of both members of the patient–caregiver dyad provides two perspectives from one interview about similar experiences that may supplement or support recall of events or management of chronic disease (Morgan, Ataie, Carder, & Hoffman, 2013; Polak & Green, 2016). Thus, the purpose of the current study was to explore experiences of rural-dwelling older adults with early cognitive impairment and their family caregivers regarding cognitive diagnostic evaluation. Patient and family experiences prior to, during, and after a diagnostic cognitive evaluation at a specialty research center (SRC) are explored in the current sub-analysis to understand and improve recognition of cognitive symptoms, ways in which symptoms are (or are not) addressed, and subsequent changes made following diagnosis.

Method

Design

The current article is based on work presented as part of the dissertation of the first author (Mattos, 2016). The article is a sub-analysis of a study that explored perceived social determinants of health among rural-dwelling older adults with early-stage cognitive impairment (Mattos et al., 2017).

While analyzing the findings of Mattos et al. (2017), data emerged regarding time-specific events surrounding a cognitive diagnosis that warranted further exploration and analysis. The current study used qualitative description, as presented by Sandelowski (2000, 2010), to describe subjective experiences of rural-dwelling older adults with early cognitive impairment and their caregivers at three time periods: pre–SRC visit, during SRC visit, and post–SRC visit. The SRC specializes in the diagnosis of AD and other dementias through outpatient evaluations with an interdisciplinary team. The three times periods examined do not reflect equal periods of time, but rather are defined as follows: (a) pre–SRC visit includes events and experiences recounted by the dyad to have occurred prior to the in-person SRC visit; (b) SRC visit includes events and experiences recounted by the dyad to have occurred during the SRC visit that was attended by both members of the dyad; and (c) post–SRC visit includes events and experiences recounted by the dyad to have occurred after the in-person SRC visit. The methodological approach of qualitative description provided the opportunity to characterize events and experiences of these periods of time as recalled in “the everyday terms of those events” (Sandelowski, 2000, p. 334). Furthermore, qualitative description has been identified as a valuable qualitative approach for research with vulnerable populations to provide “elusive cultural context” (Sullivan-Bolyai, Bova, & Harper, 2005, p. 129). Data collection comprised multiple methods, including semi-structured interviews, observations, and chart reviews. The first author (M.K.M.) performed all interviews and recorded all observations related to the interviews, including the interviewer's own actions, interactions, and behaviors. Bracketing from the time of study development through dissemination was acknowledged (Sandelowski, 1986).

Nine semi-structured interviews with older adult–caregiver dyads were conducted in participants' homes. Details of the parent study and interview guide have been described previously (Mattos et al., 2017). To summarize, there was a 14-question guided interview with one question that asked members of the dyad about their last SRC visit, as well as follow-up probes that encouraged participants to describe feelings and events during the visit. Although not the primary purpose of the interview, pre– and post–SRC visit experiences were described, often spontaneously, throughout interviews. All interviews were audio recorded and later transcribed verbatim. University of Pittsburgh Institutional Review Board approved all procedures prior to study recruitment.

Sample

The parent study (Mattos et al., 2017) used purposeful sampling and participants were recruited from a SRC in Pittsburgh, Pennsylvania that enrolls study participants in various ways, including referral from clinicians, self-referral by participants or referral by concerned family members, active recruitment through community organizations, and enrollment of volunteers who wish to contribute to research. Data are collected at the initial visit and each annual follow-up visit by nurses, physician assistants, social workers, neuropsychologists, and other SRC research personnel over the course of 2 to 4 hours, with at least 17 standardized tests administered per visit. Older adults are required to come with a caregiver for SRC visits, as caregivers provide information about the older adults' clinical symptoms; thus, caregivers were concurrently recruited and invited to consent to the study. Care-givers' contributions to interviews have been found to help convey their care recipients' stories (Holstein & Gubrium, 1995), provide a thicker description of experiences and events, and aid in reducing recall bias. During one interview, an additional caregiver asked to participate in the interview, and data from both caregivers were included in analysis. After the multidisciplinary evaluation and consensus conference with clinicians, a standardized diagnostic feedback session was conducted by a neurologist and social worker with the dyad to discuss findings from the evaluation (Lingler et al., 2006).

Participants were drawn from a longitudinally followed cohort at an Alzheimer's disease research center. Inclusion criteria for caregivers were: (a) >30 years of age, (b) English speaker, (c) >7 years of education, (d) adequate visual and auditory acuity to complete neuropsychological testing, and (e) a reliable caregiver capable of providing information about the older adult's clinical symptoms. Additional inclusion criteria for older adults in the current study were: (a) ≥65 years of age; (b) current diagnosis of either (1) MCI based on Petersen et al. (2001) and Lopez et al. (2003), or (2) probable AD diagnosis based on McKhann et al. (1984) and a Mini Mental State Exam (MMSE) score ≥18 (Folstein, Folstein, & McHugh, 1975); and (c) rural-dwelling. USDA Rural–Urban Commuting Areas Codes (RUCAs) were used to classify rural and urban residence by ZIP code, where rural included primary RUCA codes 4 through 10 (RUCA Rural Health Research Center, n.d.). RUCA codes “classify U.S. census tracts using measures of population density, urbanization, and daily commuting,” (USDA Economic Research Service, n.d., para. 1) where urban-dwelling is defined as metropolitan (1 through 3) and rural as micropolitan, small town, and rural areas (USDA Economic Research Service, n.d.). Purposive sampling, specifically sampling for participant characteristics (e.g., gender, degree of rurality, relative degree of cognitive impairment) was used during recruitment to maximize diversity and promote heterogeneity within the sample (Glaser & Strauss, 1967). Purposive sampling minimized the possibility that participants may have had advanced cognitive symptoms that would hinder their ability to share insights.

The SRC coordinator's primary responsibilities include outreach and recruitment for the SRC, and she identified individuals meeting study inclusion criteria and called eligible older adults to ask whether they would be interested in study participation. If the older adult agreed, the study's principal investigator (PI; M.K.M.) called to present the study in greater detail. Caregivers were invited to participate in the study at that time. Previous participation by dyads in SRC activities allowed for previously consented contact by the SRC coordinator for other study participation and helped promote trust in the current sample. Caregivers had attended SRC visits prior to current study involvement and participated in dyad assessments in the SRC prior to dyad interviews for the current study. Capacity to consent was assessed using the University of California, San Diego Brief Assessment of Capacity to Consent (Jeste et al., 2007), and no indications of a lack of decisional capacity were noted during the consent process. The University of Pittsburgh Institutional Review Board approved all procedures.

Measures

In addition to interview data, researchers computed distance from participant home to the SRC to understand dyads' commute and possible access issues arising from traveling from a rural area to an urban-located SRC. Home–SRC distance was calculated between participant home address and SRC address using Google Maps™ and measured in miles, rounded to the nearest whole number. A review of research data from the SRC participant charts was also performed to confirm current medication list and obtain comprehensive descriptive characteristics of the sample (e.g., birthdate, current diagnosis, diagnosis at first SRC visit, time of first cognitive diagnosis at SRC, MMSE score), already collected by the SRC.

Analysis

Transcribed data were entered into Atlas.ti™ (version 4.2). Qualitative content analyses were performed by three independent investigators beginning with line-by-line coding. Findings were organized by time period and categories of shared or similar experience. Category similarities, differences, and counter examples were then discussed among investigators until findings were verified by consensus and convergence. These analytic methods were selected because they: (a) permit large amounts of data to be condensed, clustered, sorted, and linked over time; and (b) facilitate examination of components and relationships revealed in the data (Miles & Huberman, 1994).

Results

Older adults with cognitive impairment (n = 9) were an average of 73.7 (SD = 6) years old with 14.2 (SD = 3.1) years of education. In addition, 44.4% (n = 4) of older adults were women, 100% (n = 9) were White, 88.9% (n = 8) were married, and 100% (n = 9) lived with another individual. Five (55.6%) of nine older adults had a diagnosis of MCI; four (44.4%) had a diagnosis of early-stage AD. Average MMSE score was 24.5 (SD = 3.9, range = 18 to 28). Caregivers (n = 10) were an average of 70.9 (SD = 7.4) years old with 15.6 (SD = 2.3) years of education. In addition, 70% (n = 7) of caregivers were women, 100% (n = 10) were White, 80% (n = 8) were married, and 90% (n = 9) lived with another individual, specifically their care recipient. Of nine interviews, seven (77.8%) interviews comprised individuals with cognitive impairment and their spouses; one interview comprised a female individual and her female friend; and one interview comprised an individual with early cognitive impairment, her daughter, and her husband. Time between the SRC neuropsychological testing date and study interview date was approximately 2 years (mean = 612 days, SD = 372 days), and ranged from 3 months (98 days) to approximately 3 years (1,129 days). In-home interviews took place across four states (Maryland, Pennsylvania, Virginia, and West Virginia) and were conducted by a member of the research team (M.K.M.). Average length of home visit was 110 minutes (SD = 23 minutes, range = 84 to 160 minutes), and recorded interviews lasted a mean of 80 minutes (SD = 9 minutes, range = 66 to 95 minutes). All authors analyzed the data.

Care recipient and caregiver experiences were explored across three time periods: (a) pre–SRC visit, (b) during SRC visit, and (c) post–SRC visit. Most pre–SRC visit dyad experiences were similar overall, whereas SRC and post–SRC visit experiences varied. Details about the SRC visit typically emerged when participants were specifically asked about the visit; however, events and experiences before and after the SRC visit emerged spontaneously during the interview process.

Pre–SRC Visit

Four categories were identified: (a) Description of Cognitive Symptoms, (b) Health Care Provider (HCP) Visits Related to Cognitive Symptoms Before SRC Visit, (c) Reasons for Making a SRC Appointment, and (d) Reactive to Cognitive Changes.

Description of Cognitive Symptoms. Older adults and their caregivers offered rich characterizations of symptoms and specific examples of the cognitive changes exhibited by older adults prior to the SRC visit. Most (five of nine) dyads' descriptions pointed to cognitive changes occurring over time; however, four caregivers described a sudden onset of older adults' symptoms. For older adults with cognitive changes occurring over time, reported symptoms included: difficulty balancing their checkbook, getting lost while driving, forgetting things, repeatedly asking questions, intermittent confusion, difficulty conjuring specific words, forgetting words, difficulty concentrating, and discontinuing activities that previously made them happy (e.g., journaling, reading). One 71-year-old female caregiver said her husband repeatedly asked her the same questions, but she thought “he was just not paying attention to me.” It was not until a close work colleague told her there was a “definite problem” that she realized she was not the only one noticing her husband's memory changes. Two caregivers noticed a sudden onset of cognitive symptoms, one onset following a fall and another following surgery. In two dyads, older adults noted sudden cognitive changes and caregivers shared specific event(s) and long-term cognitive changes. Sudden and insidious cognitive symptoms were described by dyads.

HCP Visits Before SRC Visit. Seven of nine older adults mentioned seeing another HCP for cognitive concerns before attending a SRC cognitive evaluation, whereas one older adult did not see a HCP for such concerns. One individual did not share this information during the interview. Of the seven older adults who saw another HCP prior to the SRC visit, five were seen by their primary care provider (PCP) and two sought out specialty care. Two older adults were prescribed cognitive medications after seeing HCPs (one PCP and one specialist), and the immediate initiation of a cognitive medication with limited diagnostics was concerning to both dyads. The 67-year-old caregiver of one older adult quoted the PCP as saying, “We'll start you on Aricept™ because it couldn't hurt.” The 65-year-old female caregiver of the other older adult said that following her husband's visit to the specialist, her husband told her that he was prescribed a cognitive enhancing medication, and when she asked what tests the specialist ran, her husband answered, “Well he didn't.”

At three of the seven visits, HCPs informed older adults they did not have AD. One 73-year-old male participant with MCI stated, “In fact, I talked to my one doctor about [my cognitive symptoms], and he told me I didn't have Alzheimer's; I had CRS [can't remember shit].” Most older adults saw another HCP prior to their SRC visit and current diagnosis, and there were inconsistencies in evaluation and treatment of cognitive concerns among HCPs.

Reasons for Making SRC Appointment. For most dyads, participation and evaluation at a SRC was related or in response to previous diagnostic uncertainty, desire to seek additional information, and concern related to a family history of AD. One 62-year-old female caregiver said that before the SRC visit, “we were just trying to get some answers to have some sort of understanding of what was going on.” Older adults with a family history of AD wanted to know their current status, including diagnosis and any other available descriptive testing. A family history of AD was also included as a reason for SRC participation and evaluation.

All participants attended SRC evaluations on their own accord; however, the individual who scheduled the appointment was not always the older adult. Of nine older adults, only three older adults scheduled their own SRC evaluations. Five caregivers scheduled the evaluation and one older adult's sister scheduled the evaluation. Motivation or reasons for the decision of who would make the appointment were not captured in interviews.

Reactive to Cognitive Changes. All dyads reported being reactive and seeking out medical care and information related to cognitive changes in themselves or their care recipients. Four participants stated they sought out medical attention for cognitive concerns; members of the other five dyads discussed personal and caregiver concerns about cognitive changes. Wanting to “get answers” was a reason dyads made the SRC appointment, which also showed dyads' initiative and motivation to seek care. Dyads shared that at the time of cognitive symptom recognition, they also sought information to describe or explain changes via internet websites (e.g., Mayo Clinic), primary care providers, specialists, or in two cases, via directly contacting the SRC for an appointment.

No questions were asked during the interview regarding family history of dementia or AD; however, four participants spontaneously mentioned family history of dementia/AD, and having a family history of dementia or AD was also presented by participants as a precipitous for seeking information about cognitive changes. For example, referencing his family history of AD, a 75-year-old man with early-stage AD stated, “There's some pressure behind me [to look into cognitive changes].” There was variation in how dyads were reactive; some used internet health resources, others used health care services, and others directly sought a SRC as a resource. However, all dyads spoke about being proactive or demonstrated proactive behaviors at the time of cognitive symptom recognition.

SRC Visit

Three categories emerged from interviews describing the SRC visit: (a) SRC Evaluation, (b) Information Presented Was Helpful, and (c) Distance Traveled to SRC.

SRC Evaluation. Overall, dyads stated that the SRC evaluation was thorough, “helpful,” and “informative.” Most dyads spontaneously mentioned that staff were “friendly,” “kind,” or helpful. Two older adults did not remember the last evaluation with much or any detail, and another older adult seemed confused as to the purpose of the visit. As the sample comprised individuals who were cognitively impaired, these findings were not surprising, but it is important to note that not all participants were able to recount the events of or their feelings regarding their SRC visit.

Information Presented Was Helpful. Older adults and their caregivers said the information provided by the SRC staff was helpful, and two participants discussed the amount of information provided. One participant, a 66-year-old man with MCI, said the evaluation was “extremely comprehensive,” and a 65-year-old female caregiver reflected that SRC staff provided “a lot of good information.” A 73-year-old female caregiver spoke about how SRC staff provide “suggestions that are…helpful, and…we follow through on them…when we think we should.” This statement highlights the idea that although “a lot of information” is provided by SRC staff, dyads ultimately choose what they hear and act on.

Limited discussion of events, such as specific testing, occurred during evaluation, but two older adults spoke about the experience as being stressful. One 70-year-old participant with MCI focused on “how tough it is to go through that [testing]. I was just wiped out. It was the worst thing I have ever done, going through that.” Although this sentiment was not shared by most participants, it is important to acknowledge the commitment these individuals undertook to participate in SRC–related activities, which sometimes lasted as long as 4 hours per visit.

Distance Traveled to SRC. Overall, eight of nine dyads did not believe distance to the SRC was a concern or did not discuss the distance or commute. To help describe possible burden of a SRC evaluation, the average distance traveled from participant home to SRC was calculated. On average, dyads traveled approximately 100 miles to the SRC (mean = 99 miles, SD = 52 miles, range = 40 to 182 miles). These distances average approximately a 2-hour commute each way, depending on traffic and road conditions. One 73-year-old woman with MCI mentioned the process of scheduling and traveling to the SRC, stating that the “tough[est] thing is getting there.” This quote was not surprising, as the sample was rural-dwelling and the SRC was located in a busy, large urban area; however, this concern was an isolated counter example, and the majority of dyads did not indicate that the commute was a concern.

Post–SRC Visit

Two categories described the post–SRC visit experience for older adults with cognitive impairment and their care-givers: (a) Emotional and Psychological Reaction to Diagnosis, and (b) Changes Following SRC Diagnosis.

Emotional and Psychological Reaction to Diagnosis. Reactions to cognitive diagnoses were generally positive and dyads described feelings of relief after learning the diagnosis. For example, one 73-year-old woman with MCI stated: “Just psychologically, I feel so much better [since I've learned my diagnosis].” Another caregiver said that a follow-up brain scan showed improvement, and he “burst into tears.” Dyads' emotional responses to the SRC diagnoses and psychological effect on everyday life demonstrated the dyadic impact of learning of a cognitive impairment diagnosis.

Changes Following SRC Diagnosis. Older adults and their caregivers shared examples of how life changed after receiving the SRC diagnosis for the individual participants and the dyad as a unit. For example, three older adults shared how they changed or made accommodations to certain activities in response to SRC staff recommendations following diagnosis, such as voluntarily discontinuing driving.

Older adults also spoke about how they made changes in their lifestyle after diagnosis, ranging from improved eating/exercising habits to withdrawing from community involvement. Regarding improved health behaviors after SRC visit and diagnosis, one 73-year-old woman with MCI stated, “All of the sudden I don't know why I decided to get healthy.” Another participant, a 70-year-old man with AD, began exercising six times per week, doing crossword puzzles and online brain stimulation games, and drinking green tea in response to the diagnosis. However, not all dyads spoke to perceived positive changes in response to the SRC visit and diagnosis. For example, a 73-year-old man with MCI said,

I know there's a lot of things that I don't get into [anymore]. I used to, but I just kind of just pull back a little bit right now because I have a hard enough time trying [to] not make myself look silly without actually extending myself.

Overall, older adults and their caregivers had various reactions to SRC diagnoses and subsequent changes, both positive and negative.

Discussion

Rural-dwelling older adults with cognitive impairment and their caregivers' experiences varied across the three time periods explored. Although dyads presented similar experiences prior to the SRC visit, experiences within categories varied, and SRC visit and post–SRC visit time period experiences further highlight differences in dyad reactions and subsequent life changes following the SRC visit. Overall, dyads presented their experiences leading up to the SRC visit and reactions to cognitive changes in detail and quantity. As older adults' diagnoses ranged from MCI to early-stage AD, there was variation in cognitive symptoms described; however, dyads consistently reported seeking to learn more about cognitive symptoms, and all dyads spontaneously described the impact of cognitive changes on everyday life throughout the three time periods.

Rural-dwelling individuals' diagnostic uncertainty combined with participants' reactive approach to investigate cognitive changes mirror subthemes presented in a metasynthesis of qualitative research on adults with MCI by Gomersall et al. (2015). Older adults and their caregivers presented narratives about how they made sense of the cognitive diagnosis across a continuum in the current study and studies presented in Gomersall et al. (2015). Similar to the selected time periods of the current study, Gomersall et al. (2015) presents cognitive changes across three time periods: past, present, and future. However, the “nostalgia for past relationships, roles and experiences” (Gomersall et al., 2015, p. 906) in the past period, which was found throughout the literature included in the meta-synthesis, did not emerge in the interviews of the current study; rather, reactive, or proactive, efforts undertaken by dyads at the time of symptom recognition emerged in the current study. The current study also captured caregiver experiences describing uncertainty in their loved one's diagnosis and how they tried to make sense of the diagnosis over time.

Current findings support and build on the work of Johansson, Marcusson, and Wressle (2015), which explored the experiences of individuals with cognitive impairment and their caregivers, as well as the consequences of cognitive impairment in everyday life. Categories emerged in the current article that mirrored categories found in interviews by Johansson et al. (2015): recognition and burden of cognitive symptoms, uncertainty about the future, and changes made to patients' activity patterns. Johansson et al. (2015) also found substantial variation in older adults' and caregivers' experiences in their sample comprised of caregivers and older adults with MCI and mild dementia. Variation in experiences, especially at and after the SRC visit, may be related to the cognitively diverse sample (Grundman et al., 2004; Petersen et al., 2014).

Findings demonstrate that dyads made conscious, pointed efforts to seek information and care in response to cognitive changes prior to SRC diagnosis. These efforts are in contrast to previous work, in which rural HCPs identified a lack of awareness of cognitive changes and less use of resources early in the disease process by rural-dwelling patients (Morgan, Semchuk, Stewart, & D'Arcy, 2002). Based on the current study findings, dyads did not seem to lack awareness; rather, dyads shared that they lacked clarity and consistency in the health care services and diagnoses provided locally. The current researchers also found that few older adults with early-stage cognitive impairment scheduled their own SRC evaluation. The interviewer did not probe into reasons why few older adults scheduled their evaluations, but possible reasons may include older adults' cognitive deficits preventing them from scheduling evaluations or preferring their caregivers to make appointments.

Dyads traveled approximately 2 hours to seek specialty health care services in an urban SRC, and by the time of SRC evaluation, more than one half of dyads had already sought local specialty health care services. The long distance traveled and additional specialty care services at a SRC demonstrate dyads' information- and answer-seeking approach to cognitive symptom identification, as well as possible lack of resources or specialist care in rural areas.

Strengths and Limitations

There was a range in older adults' cognitive functioning and SRC diagnoses as well as rurality of dyad residence, which may have impacted the shared experiences across all three time periods. The range of rural classifications and state residence of participants may be considered both a strength and possible weakness. Participants also reported a high level of educational attainment, with many reporting some college education and an overall average of approximately 14 years of education. This level of education may not reflect that only approximately 50% of rural-dwelling individuals have some college education, an Associate degree, or a Bachelor's degree, as opposed to 62% of their urban counterparts (USDA Economic Research Service, 2017).

Findings reflect the perceptions and experiences of an information-seeking and highly motivated sample willing to undergo hours of testing and a substantial drive, which may not be typical of rural-dwelling adults. The rural-dwelling older participants in the current study likely represent a sample across a continuum of individuals receiving cognitive diagnoses. It is important to explore experiences of individuals who did not actively seek answers to cognitive symptoms to better describe rural-dwelling adults across a continuum of care-seeking behaviors. Another limitation is the lack of diversity within the sample, particularly the fact that the sample comprised all White individuals, as well as the finding that the sample was information-seeking and proactive in response to their cognitive changes. Within the SRC coverage area, rural-dwelling minorities comprise less than 5% of the population (RHIhub, 2010), and future studies focused on rural-dwelling minority recruitment are warranted. Noting these considerations, the primary objective of the current study was to examine rural-dwelling older adults' experiences surrounding a diagnostic evaluation, and the study explored the unique experiences of this underserved and underrepresented population.

Another strength of the current study is that rural caregivers' perspectives and experiences were captured at the same time as those of rural care recipients. Previous work in rural areas has shown that caregivers tend to express needs (e.g., need for information about the disease, prognosis, and treatment) more than care recipients with cognitive concerns (Edelman, Kuhn, Fulton, & Kyrouac, 2006). Thus, simultaneously capturing the perspectives and experiences of care recipients and caregivers provides rich data from two perspectives to better understand context and social support. Inclusion of both members of the dyad highlights the importance of the dyadic relationship, which can be central to the experiences of both members coping with the chronic illness of the patient; however, the dyadic relationship is an important research topic that was not explored in depth in the current study.

It is important to note that the SRC evaluation was the only time point at which interviews probed dyads' experience, as was directed by the interview guide. The study was conducted as a sub-analysis; thus, data saturation was not achieved. There was also a wide range of time between the SRC neuropsychological evaluation and the interview date, which may have led to recall bias. Controlling for time between evaluation and interview is important for future studies to reduce bias. Although probed, different SRC evaluation experiences were presented by care recipients and caregivers. In addition, explicit probing into typical SRC events may have provided richer accounts of the visit itself. Future qualitative work should use narratives from both members of the dyad to explore the time periods presented in the current work in real-time, so that participants are not reporting their feelings and experiences retrospectively, but rather reporting them as they experience them. Thus, interviews could capture experiences and feelings during the time period of interest and avoid participant recall bias.

Conclusion

There was variation in dyad descriptions of living with cognitive changes across interviews for all three time periods explored. However, dyad experiences reinforced previous work that captured differences in dyad descriptions of cognitive changes, reactions to cognitive changes and diagnosis, and life changes following diagnosis. The current rural-dwelling sample illustrated a range of reactive and information-seeking individuals learning to live with their own or loved one's cognitive diagnosis. Nurses play significant roles in the diagnostic and post-diagnostic periods for patients with early-stage cognitive impairment through their clinical diagnostic expertise and appropriate direction of resources. Rural-dwelling older adults are an underserved and underrepresented population, and their narratives can provide information to help nurses better direct resources and early interventions to promote cognitive health.

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Authors

Dr. Mattos is Assistant Professor, School of Nursing, University of Virginia, Charlottesville, Virginia; and Dr. Nilsen is Assistant Professor, and Dr. Lingler is Associate Professor, Schools of Nursing and Medicine, Clinical and Translational Science Institute, University of Pittsburgh, Pittsburgh, Pennsylvania.

The authors have disclosed no potential conflicts of interest, financial or otherwise. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health (NIH). Research was supported by grants from the National Institute of Nursing Research of the NIH (F31 NR015188; M.K. Mattos) and the National Institute on Aging of the NIH (P50 AG005133; PI: O. Lopez); and the Judith A. Erlen Nursing PhD Student Research Fund 2016 and Margaret E. Wilkes Scholarship Fund Award 2015, University of Pittsburgh School of Nursing.

Address correspondence to Meghan K. Mattos, PhD, RN, CNL, Assistant Professor, School of Nursing, University of Virginia, McLeod Hall 4010, PO Box 800782, Charlottesville, VA 22908; e-mail: ms2bv@virginia.edu.

Received: March 05, 2018
Accepted: June 04, 2018

10.3928/19404921-20180628-03

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