Managing Your Loved One’s Health: Development of a New Care Management Measure for Dementia Family Caregivers

Abstract

The National Alzheimer’s Plan calls for improving health care for people living with dementia and supporting their caregivers as capable health care partners. Clinically useful measurement tools are needed to monitor caregivers’ knowledge and skills for managing patients’ often complex health care needs as well as their own self-care. We created and validated a comprehensive, caregiver-centered measure, Managing Your Loved One’s Health (MYLOH), based on a core set of health care management domains endorsed by both providers and caregivers. In this article, we describe its development and preliminary cultural tailoring. MYLOH is a questionnaire containing 29 items, grouped into six domains, which requires <20 min to complete. MYLOH can be used to guide conversations between clinicians and caregivers around health care management of people with dementia, as the basis for targeted health care coaching, and as an outcome measure in comprehensive dementia care management interventions.

Keywords

Partnering for Better Health–Living With Chronic Illness: Dementia PBH-LCI:D Managing Your Loved One’s Health MYLOH engagement activation multimorbidity complex illness

Introduction

For the millions of people currently living with progressive cognitive impairment, effective management of health care needs becomes increasingly difficult, and ultimately requires close collaboration between clinicians and the family/friend caregivers (hereafter referred to as “caregivers”) who are likely to become their legal health care representatives (Hepburn, Lewis, Tornatore, Sherman, & Bremer, 2007; Reinhard, Levine, & Samis, 2012). Today in the United States, more than 15 million caregivers and informal care partners of persons living with dementia provide 17 billion essential but unpaid care hours valued at US$216 billion (Bandura, Barbaranelli, Caprara, & Pastorelli, 2001). Without this uncompensated investment, the existing formal systems of care would likely collapse. Caregivers’ roles include supervision and management of the medical and psychiatric comorbidities that commonly occur in people with dementia (Bynum et al., 2004; Sadak, Katon, Beck, Cochrane, & Borson, 2014) and may require complex health care management and coordination. These responsibilities make significant demands on caregivers’ time and energy and require engagement of caregivers in an ongoing learning process to acquire the new knowledge and skills needed to meet changing care demands (Bynum, 2009; Lyketsos, 2007; Mitnick, Leffler, Hood, & American College of Physicians Ethics, Professionalism and Human Rights, 2010; Reinhard et al., 2012; Sadak et al., 2014). Despite their importance to the formal health care system (Porock, Clissett, Harwood, & Gladman, 2015), dementia caregivers are frequently untrained and unprepared to take on complex health care tasks (Gaugler, Potter, & Pruinelli, 2014; Hepburn, Tornatore, Center, & Ostwald, 2001; Porock et al., 2015; Rabow, Hauser, & Adams, 2004). Nearly two thirds lack confidence in managing the health of their care recipients, and only a third report receiving help from health care providers; this lack of confidence is associated with caregiver strain and depression (Jennings et al., 2015).

In spite of the multiple calls for action that span more than two decades and emphasize the importance of clinician–caregiver communication and assessment of caregiver needs for coaching in managing patient health (American Medical Association [AMA], 1993; Mitnick et al., 2010), there is little evidence that the needs of family/friend caregivers are systematically assessed in health care settings or that caregivers are regularly recognized or engaged as key members of health care teams. Measurement gaps are particularly striking for caregivers of people living with dementia (National Quality Forum [NQF], 2014), reinforced by observational studies that establish the association of dementia with markedly greater use of acute health care services, including potentially preventable and all-cause hospitalizations (Bynum et al., 2004; Phelan, Borson, Grothaus, Balch, & Larson, 2012) and readmissions (Daiello, Gardner, Epstein-Lubow, Butterfield, & Gravenstein, 2014), emergency department visits (Feng, Coots, Kaganova, & Wiener, 2014), and transitions between home, hospital, and long-term care (Callahan et al., 2012). It is currently unknown whether gaps in caregivers’ knowledge, skill, and partnership with treating clinicians might contribute to this pattern of crisis care.

To date, most existing caregiver assessment tools and interventions focus on depression, stress, and burden and skills to manage the cognitive, functional, and neurobehavioral symptoms of dementia (Gitlin, 2012; Health Quality Ontario, 2008; Napoles, Chadiha, Eversley, & Moreno-John, 2010; Paolino & O’Malley, 2013). A comprehensive review of caregiver assessment measures found that none fully reflected the scope of caregivers’ roles in the health care of people living with dementia, including partnering with clinicians, and sustaining their own health and well-being (Sadak, Souza, & Borson, 2016). Furthermore, few existing instruments have been culturally tailored, despite clear evidence of ethnic/cultural differences in the experiences of family caregivers (Napoles et al., 2010), the higher burden of dementia and comorbid chronic medical conditions in older African American and Hispanic populations (Manly & Mayeux, 2004), and greater stigma associated with dementia among ethnic minority populations (Hansen, Hodgson, & Gitlin, 2016).

In the United States and worldwide, recognition of the rising population burden of those with chronic disease has emphasized the need to incorporate patient-centered principles into health care, using dynamic communication between clinicians, patients, and caregivers (American Geriatrics Society, Expert Panel on Person-Centered Care, 2016). Patient-centered care delivery calls upon multiple skills, a broad knowledge base, and the expertise of several clinical disciplines. In dementia, these elements of health care are rarely found together outside of specialized memory disorder clinics, and coordination across medical and psychosocial settings and disciplines requires significant and focused effort (Borson, Scanlan, Sadak, Lessig, & Vitaliano, 2014). In a patient-centered health care model for dementia, family caregivers are considered in tandem with the patient, as they play a role in all domains of care, sometimes as recipients, often as partners with patients and their health care providers (Borson & Chodosh, 2014). Therefore, the best practices in dementia clinical care and research should be based on dyad-centered approaches (Borson & Chodosh, 2014). Care models that prioritize caregiver assessment and clinician/caregiver partnerships exist but are not yet broadly adopted (Borson & Chodosh, 2014). Some of the barriers involve physician attitudes, beliefs, and experience in health care systems. Physicians may feel they have little role to play in dementia care (Yaffe, Orzeck, & Barylak, 2008), little ability to improve quality of life for their patients with dementia, and inadequate support from the health systems they work in regarding resources for coordination of dementia care services (Harris, Chodosh, Vassar, Vickrey, & Shapiro, 2009). Moreover, the more they know about what constitutes high quality dementia care, the more difficult they perceive it to be (Chodosh et al., 2006). One approach to reducing these barriers could be to equip caregivers with the knowledge and skills they need to be capable partners with clinicians in managing the health care of people living with dementia. As a first step, measurement tools are needed for comprehensive assessment of caregivers’ knowledge and skills to take on specific health management roles on behalf of the patient, and to share, with clinicians and patients, responsibility for setting goals and achieving optimal patient health outcomes while meeting their own health and wellness needs (Bogardus et al., 2001; NQF, 2014; Sadak et al., 2016; Schwartz, Darlak, Whitlatch, & Kelly, 2013).

This reasoning informed our work to develop, operationalize, and culturally adapt a new caregiver-centered measure focused on caregiver participation in the health care of people living with dementia, called Managing Your Loved One’s Health (MYLOH). This manuscript describes its multiphase development, starting with application of a method for creating participant reported outcome (PRO) measures and concluding with tailoring for cultural acceptability with African American and Hispanic caregivers, with the goal of achieving conceptual/linguistic equivalence for diverse groups of participants.

Theoretical and Methodological Foundations

The development of MYLOH was informed by four primary sources: (a) the concept and construct of patient activation—a process of engaging patients in their own chronic disease management that involves improving knowledge, skills, and confidence in mastering self-management and partnering with clinicians (Hibbard, Stockard, Mahoney, & Tusler, 2004); (b) a dementia-capable health care systems framework (Borson & Chodosh, 2014); (c) a caregiver self-assessment questionnaire (AMA) and other quality indicators from the AMA measurement set, addressing clinical processes associated with high quality health care for dementia (Odenheimer et al., 2014); and (d) a method for developing and validating PRO instruments (Acaster, Cimms, & Lloyd, 2012; Patrick et al., 2011a, 2011b).

The construct of patient activation, measured using the Patient Activation Measure (PAM; Hibbard et al., 2004), has been useful in health care delivery for people with chronic illness. Health systems that use PAM to monitor activation and encourage patients to assume active roles in self-care report better control of chronic diseases, reduced emergency department visits, hospitalizations, and stress, and better medication adherence and quality of life (Hibbard, Greene, & Overton, 2013; Hibbard, Greene, & Tusler, 2009; Hibbard & Tusler, 2007; Mitchell et al., 2014). Patient activation concepts informed our work, but PAM does not translate well for persons with dementia due to progressive cognitive deterioration that leads to surrendering health management tasks to family/friend caregivers. Building on this framework, we set out to define a construct of dementia caregiver activation: the process of gradually taking on caregiving roles, developing knowledge and skills to manage the patient’s health, and learning to partner with clinicians, while maintaining self-care (Sadak, Korpak, & Borson, 2015). To define preliminary domains of caregiver activation, we incorporated principles for developing dementia-capable health care systems (Borson & Chodosh, 2014; Lessig et al., 2006), which call for assessing and engaging family caregivers as soon as cognitive impairment is identified, and fostering cohesive management across the following domains: the patient’s cognitive, medical/safety, and psychosocial issues, and caregiver issues and needs. We also reviewed dementia quality indicators (Odenheimer et al., 2014) and a caregiver self-assessment questionnaire (AMA) designed for medical settings, which assesses the caregiver’s physical/mental health and ability to manage everyday life tasks apart from caregiving, obtain support from others, and manage caregiving stress. Our final preparatory task was to identify a suitable method for instrument development.

Traditional methods typically start by generating a large pool of candidate questions followed by psychometric testing, factor or similar analytic methods for item reduction, elimination of poorly performing items, followed by establishing face validity (relevance to the target population). Because our goal was to develop a comprehensive, clinically relevant assessment of caregivers’ engagement in patients’ health management (a participant-centered construct), we selected a method designed for creating patient (participant) reported outcome instruments (Acaster et al., 2012; Patrick et al., 2011a, 2011b). This method prioritizes structured qualitative inquiry supported by quantitative methods, framing outcomes in terms of the issues most relevant to participants and the health experiences of individuals. It is unique in prioritizing a target group’s input into the conceptual and operational definition of a construct and into item generation itself (Patrick et al., 2011a, 2011b). PRO instruments are used to anticipate, detect, and address participants’ concerns and to guide patient-centered clinical goal setting, and are therefore well suited for use in developing person-centered care models (Acaster et al., 2012). To our knowledge, MYLOH is the first PRO instrument designed for and with dementia family caregivers in collaboration with expert clinicians.

Method

All research activities were reviewed and approved by the University of Washington Institutional Review Board for Protection of Human Subjects. We based Phase 1 and 2 instrument development approaches on explicit, rigorous criteria for developing PRO instruments (Patrick et al., 2011a, 2011b). Phase 3, psychometric validation, is described in detail in a prior publication (Sadak et al., 2015). The method for Phase 4, tailoring for cultural equivalence, was adapted from Herdman’s Model of Cultural Equivalence (Herdman, Fox-Rushby, & Badia, 1998). This approach aims to elicit aspects of a concept that are universal across cultures and to tailor the language of its expression to reflect these common concepts in a way that is understandable and acceptable to all participants. Because we worked only with MYLOH in English, and all study participants were required to speak and read English at the sixth-grade level, cultural tailoring was limited to establishing a version of MYLOH that was conceptually equivalent for White, African American, and English-speaking or bilingual Hispanic dementia caregivers.

Initial Questionnaire Development, Phases 1 and 2

PRO instrument development consists of two phases. Phase 1 encompasses data gathering, including defining intended use and stakeholders, conducting concept elicitation interviews, drafting items, and creating an item-tracking matrix to be used in iterative refinements. Phase 2 evaluates participants’ understanding and users’ assessment of validity, using structured cognitive interviews focused on the cognitive process that respondents use to answer survey questions; testing usability, ease of use, layout and relevance of the response scale; and assessing face and content validity (Patrick et al., 2011a, 2011b; Figure 1).

Figure 1.

MYLOH Development. Study Flow Chart.

Data sources

Data were initially gathered via qualitative concept elicitation interviews with 16 dementia experts specializing in geriatric medicine, geriatric psychiatry, nursing, psychology, social services, or medical anthropology, and 35 family caregivers. Cognitive interviews were subsequently conducted in separate focus groups with five experts and 15 caregivers. Experts, identified through the Alzheimer’s Association of Central and Western Washington, contacts of T.S. and S.B., and others they recommended, were invited based on their known interest and experience in dementia clinical practice and/or research. Self-identified primary caregivers were recruited through local Alzheimer’s Association and Senior Services dementia support groups, assisted living facilities, and memory clinics and through other caregivers. Caregivers regularly provided hands-on care for a person with dementia and attended health care appointments. All participants were required to speak and read English. The number of experts and caregivers required was dictated by data saturation; we stopped recruitment when no new interpretations were generated by additional participants (Guest, Bunce, & Johnson, 2006).

Data Gathering, Phase 1. Concept Elicitation Interviews (Figure 1)

All interviews were audio recorded and transcribed. In this iterative process, each interview informed the next research participant encounter. When opinions were expressed and new themes were identified, they were vetted by the subsequent participants. We started with experts because it is the clinician’s job to understand, systematically assess, and manage all aspects of dementia patients’ health and to partner with caregivers in developing meaningful and effective care plans that caregivers can and will help patients implement. The concept elicitation phase concluded with caregiver interviews to focus all final themes and candidate questionnaire items on the areas they identified as important.

Expert interviews

Information was collected about participants’ demographic characteristics, professional affiliations, time since licensure, and personal family caregiving experiences. We first asked respondents several broad questions relevant to caregiver’s responsibilities for managing patient’s health. Example questions are as follows: How do you see the role of the caregiver in managing the health of a person living with dementia? How do you see the role of the clinician in partnering with caregivers who are managing those daily health care needs? Do you think that caregivers have different degrees of engagement in managing their care recipient’s health? How would you characterize this engagement?

We then briefly introduced the domains derived from PAM (Hibbard et al., 2004), the dementia-capable health care systems framework (Borson & Chodosh, 2014), dementia quality indicators (Odenheimer et al., 2014), and Caregiver Self-Assessment Questionnaire (AMA). Participants were instructed to keep in mind general theoretical concepts that were just introduced to them while reading PAM questions directly paraphrased to apply to caregivers (courtesy of E. Mahoney and J. Hibbard, personal communication, March 7, 2012) and to comment on each question’s relevance to dementia caregivers. If a question was not found relevant, we asked clinicians to rephrase each question and/or to offer alternatives. Participants provided general comments about the a priori domains and the match of the candidate items with these domains. The first draft of MYLOH questions was created based on the themes derived from expert concept elicitation interviews, PAM items edited by the experts and additional questions generated during the interviews.

Caregiver interviews

Information was collected about caregivers’ demographic characteristics: age, gender, ethnicity, education, and relationship to care recipient; caregivers’ behavioral health characteristics: stress, anxiety and depression; and care recipients’ demographic and dementia related characteristics: age, gender, ethnicity, education, dementia diagnosis and stage. As with expert interviews, we started with broad questions about topics related to managing their care recipient’s health at home and about defining the role of caregivers at the interface with health care. These questions were informed by the same constructs and materials used in expert interviews and the themes that emerged from them. Sample questions were as follows: What is your role in managing your loved one’s health? How do you identify your care recipient’s health needs? What would you consider to be “red flags” or signs that your care recipient is becoming ill and may need medical attention? What affects your confidence about your ability to follow through with care tasks? How do you know when you need to schedule a health care appointment for your care recipient? How do you meet your own needs? We then introduced the concept of patient activation and asked caregivers to consider whether and how it might translate to them as caregivers for a person living with dementia.

We asked caregivers to evaluate the draft of questionnaire items derived from expert interviews, provide numeric ratings of item relevance from 1 = not relevant to 4 = highly relevant, to edit questions that they thought needed improvement and to provide a rationale if they thought a question should be discarded or added. We then asked each caregiver to paraphrase all candidate items in their own words, to determine whether the item was interpreted correctly and assessed the intended construct. Caregivers also reviewed and commented about the list of domains that was generated based on the literature and expert interviews, and discussed the match of candidate items to the domains.

MYLOH’s conceptual framework was iteratively revised based on feedback provided by participants. Items included in the second MYLOH draft were based on the themes from caregiver concept elicitation interviews and questions generated by experts and subsequent rounds of caregiver interviews. Regardless of source (expert or caregiver), items had to receive an average caregiver relevance rating of at least 3.

Data gathering, Phase 2. Assessing Respondents’ Understanding: Cognitive Interviews and Usability

Focus groups

Expert and caregiver focus groups were conducted separately and audio recorded and transcribed. A structured interview guide and the techniques of verbal probing, thinking aloud, and item-relevance rating (Polit & Beck, 2006) were used to conduct one expert focus group (n = 5) and two caregiver focus groups (n = 8, n = 7). Participants were asked to comment on and provide numeric ratings of the relevance and clarity of MYLOH instructions and each individual question, the appropriateness of the response scale, item order, and the general appearance of the questionnaire (e.g., layout, spacing, font). Caregiver focus groups provided feedback about the domains, the match of items to domains, and the time required for each participant to complete MYLOH.

Analysis

Phase 1. Concept Elicitation Interviews

During this phase, analyses were done in a consecutive stepwise manner starting with expert interviews and concluding with caregiver interviews. Transcripts were reviewed as they were collected, and entered into Dedoose (http://userguide.dedoose.com/Dedoose User Guide.pdf), a mixed methods statistical analysis software for both qualitative and quantitative data. Data were cleaned (transcripts compared with the audio recording) on a rolling basis. Transcripts were coded using caregivers’ words or short phases that symbolically assign a summative, salient, essence-capturing attribute (Polit & Beck, 2006) and their content grouped into concepts and subconcepts. TS and SB, assisted by J.D.W., carefully reviewed and reconciled all thematically grouped concepts. To be translated into questionnaire items, concepts had to be elicited from at least two participants. We maintained an item-tracking matrix that contained all draft questionnaire items with their iterations, the rationale for editing, participants’ feedback quotes and the justification for retention or removal from the item pool. This matrix was also used to determine the final items, response scale, and preliminary domain assignments for each item. In addition, researchers kept extensive field notes containing contextual observations of participants’ responses including body language, prolonged pauses, and visible emotional responses to a study question. Field notes were used to identify content areas and items needing further investigation with subsequent participants to assure acceptable item wording.

Phase 2. Cognitive Interviews and Usability

We analyzed expert focus group data prior to conducting caregiver focus groups. TS and SB read focus group transcripts and when indicated by the consensus of at least two experts, rephrased, reordered, removed, or added items. The resulting draft questionnaire was evaluated by the first caregiver focus group and consensus edits made to the items and questionnaire layout; the final caregiver focus group reviewed and evaluated the resulting draft. This draft was again reviewed by all participants (experts and caregivers) to establish content validity. Participants independently completed item-relevance ratings and data were combined into an average Content Validity Index (CVI; Polit & Beck, 2006). All items were rated on a 4-point ordinal scale to avoid overendorsement of a neutral midpoint. Only items that had an average relevance score of 3+ were retained in the final questionnaire. Expert and caregiver focus groups provided ample feedback about item order. TS and SB reconciled feedback and used theoretical domains and logic to determine the final order (e.g., starting with general knowledge and progressing to questions assessing more detailed and complex applied knowledge and skills).

Results

Study Sample Characteristics

Experts (n = 16)

Mean age was 45. Two thirds reported a personal history of having been a family dementia caregiver after becoming a professional dementia specialist, with an average time in practice after licensure (for clinicians) of 15 years, and 7 years in dementia care. Most were women (80%), all were Caucasian, and all reported that they enjoyed working with dementia patients and considered their work personally meaningful.

Caregivers (n = 35)

Mean age was 63; 64% were women and most were Caucasian and well educated. Nearly all were relatives (45% wives, 29% husbands, and 23% adult children; 3% were friends), 57% were retired, 83% had medical power of attorney, 28% reported having a diagnosis of depression and/or anxiety, 24% took psychotropic medications to treat these symptoms and 16% were receiving psychotherapy or counseling, 85% of caregivers described their caregiving stress as moderate to high, and 67% described their physical health as good or excellent. The majority cared for people with moderate to severe dementia. For the formative stages of this work, we chose more experienced caregivers as participants to capture the breadth and depth of caregivers’ “job responsibilities” as they unfold with prolonged caregiving experience.

Concept Elicitation Interviews

Experts

Several major themes emerged from expert interviews.

Theme 1: Dementia is an index disease that influences every aspect of a patient’s health: physical, mental, and self-care.

Selected Quote: “Family members need to embrace the reality of their new roles as caregivers, to learn about patient’s dementia and comorbidities and how to manage all aspects of patient’s health.”

Theme 2: Patient and caregiver are a unit of care.

Selected Quote: “Caregivers manage all aspects of patient’s health, but they frequently do not know what questions to ask and what symptoms to monitor and to report. Therefore, clinicians need to consistently assess the needs of caregivers for improving knowledge and skills to manage patient’s dementia and comorbidities.”

Theme 3: Activated caregivers are better able to engage appropriate health care services.

Selected Quote: “Working with disengaged caregivers is frustrating, because these caregivers do not ask a lot of questions and do not follow clinician’s recommendations for home management.”

Theme 4: Good self-care is necessary for successfully fulfilling caregiving roles.

Selected Quote: “A caregiver is not able to be effective if he/she is not taking care of him/herself.”

When asked about PAM items paraphrased to address caregivers, experts suggested changes in the wording of all 13 items and provided 10 additional candidate items; 11 new items represented major themes that emerged from expert interviews (e.g., “I understand problems/issues that my loved one has with different aspects of his/her health: physical, mental, cognitive, self-care”). Based on the expert interviews, DRAFT 1 contained 34 candidate items.

Caregivers

Major themes emerging from caregiver interviews overlapped but added to those identified by experts.

Theme 1: Caregiver’s responsibility for the care recipient’s health includes managing the patient’s cognitive, medical/physical, emotional/psychiatric, and functional needs.

Selected Quote: “It is my responsibility to care for my wife and to provide everything that she needs every step of the way. I help her with forgetfulness, with her moods and with her medical issues. I also help her do daily tasks and care for herself.”

Theme 2: Caregivers do not prioritize self-care.

Selected Quote: “I do not have 45 minutes a day for myself.” “I need more sleep and more personal time (than I get).” “My own needs are not a priority for me.”

Theme 3: Caregivers see themselves as patient advocates, but defer the expert role to clinicians.

Selected Quote: “I never feel like an expert.” “I try to make our needs known, but ultimately, doctors know best.”

Theme 4: Caregivers may feel that clinicians disregard their views and opinions.

Selected Quote: “I have a feeling that doctors do not care about my opinions, they look at me as a bossy wife and frequently negate what I say.”

Theme 5: Caregivers do not always feel comfortable communicating their own needs to clinicians or asking for help.

Selected Quote: “During my husband’s doctors’ appointments, it is not my place to ask personal health or self-care questions, because we are dealing with his doctor, he is the patient.”

Overall, caregiver consensus was to retain all 34 expert-generated items but to paraphrase and edit 30 of them. An additional seven items were generated based on the themes that emerged from caregiver interviews (e.g., “I can advocate for him/her in health care situations”). DRAFT 2 was created incorporating the extensive caregiver input and contained 41 candidate items.

MYLOH Domains derived from combining results of expert and caregiver concept elicitation interviews (Sadak et al., 2015) included caregivers’ ability to address patients’ cognitive, medical/physical, emotional/psychiatric, and functional health needs in terms of (a) basic understanding of the patient’s dementia; (b) recognizing and anticipating day-to-day symptoms and challenges; (c) recognizing sudden/worrisome changes; (d) managing day-to-day symptoms and challenges; (e) managing sudden/worrisome changes, engaging health services, and advocating for the patient in health care situations; (f) understanding and managing care recipients’ medications; and (g) practicing self-care.

Assessing respondents’ understanding, Phase 2. Cognitive interviews and usability. Questionnaire layout

Consistent with general principles of questionnaire design for older adults, larger font size and more white space were preferred. Both experts and caregivers requested examples for each item for ease of response and caregivers requested that we provide definitions (e.g., dementia, health care provider, caregiver) and these were added to the MYLOH instruction sheet.

Response scale

Participants were offered choices of several response styles including choices among various terms: know, can, do, prefer, agree, disagree, does not apply to me, not my job, not my responsibility. Focus group feedback was iteratively reconciled, incorporated, and tested with subsequent focus groups. The initial questionnaire contained several reverse-coded items to increase cognitive processing and allow identification of possible response inconsistency. Caregiver groups found these difficult to understand and strongly requested that these items be restated in positive terms.

Item relevance and content validity

Six items scoring low on relevance scales were discarded. For the rest, relevance and ease of understanding scales yielded strong face validity and a combined CVI of 0.95.

Domain relevance

All seven domains were retained based on favorable participant feedback. DRAFT 3 (Figure 1) was generated based on combined feedback from expert and caregiver focus groups and included 35 items grouped into seven domains, rated using a 5-level response scale ranging from (1) disagree completely to (4) agree completely, and (0) not my responsibility. This version had a sixth-grade reading level and took about 20 min to complete.

MYLOH questionnaire: Psychometric validation, Phase 3

One hundred thirty dementia caregivers completed study questionnaires and DRAFT 3 MYLOH (described in detail in Sadak et al., 2015) at baseline and at 14 days follow-up. MYLOH demonstrated strong reliability, construct, and face validity. Confirmatory factor analysis produced a 7-factor solution that matched a priori established domains. A “basic understanding of patient’s dementia” domain consisting of three items (caregiver’s knowledge of specific dementia diagnosis, type and stage) was omitted from the subsequent iteration of MYLOH after Rasch analysis identified it as lacking strong information value (and likely not requiring more than simple caregiver education rather than coaching). The psychometrically validated MYLOH DRAFT 4 (Figure 1) contained six domains and 32 questions (Sadak et al., 2015).

MYLOH questionnaire tailoring for cultural equivalence, Phase 4

Nearly all participants in Phases 1 to 3 of MYLOH development were White and well educated, and had good access to resources. To assure that MYLOH items were relevant, properly interpretable and acceptable to caregivers from the two largest ethnic minority populations in the United States, we conducted preliminary cultural tailoring for conceptual/cultural equivalence and acceptability. Self-identified primary caregivers (African American [AA], n = 26, and Hispanic [H], n = 14) were recruited from community support organizations. We continued recruiting until thematic saturation was reached. Trained interviewers conducted one-on-one interviews in caregivers’ homes and interview data were handled as previously described. After providing basic demographic information, participants were asked general questions about how dementia is perceived in their culture. Example questions are as follows: What comes to mind when you hear the word “dementia?” If negative connotations were reported, the follow-up question was: What word would be more culturally acceptable? What comes to mind when you hear the word “caregiver?” What are the expectations in your family about caring for older adults? What are the roles of the primary caregiver? What are the roles of other family members? What are some challenges that you face in your caregiving role?

Participants were then asked to read each MYLOH question aloud and paraphrase it in their own words. If the meaning was perceived incorrectly, the interviewer discussed the intended meaning and asked for suggestions to improve the language. Once the meaning was interpreted correctly, caregiver was asked whether the question was important, relevant, and culturally appropriate. Participants were asked whether some items should be discarded and whether new items should be added and why. If new items were recommended with a rationale, new items were tested with subsequent study participants. Caregivers were also asked to review the list of 6 MYLOH domains and to comment about their relevance.

Analysis

Analyses followed the same procedures as in Phases 1 and 2 and included thematic analysis by two independent reviewers and maintenance of the item-tracking matrix containing information about each item and suggested edits. Transcripts were grouped by race/ethnicity and separate AA and H columns were added to the item-tracking matrix to allow for identification of changes recommended by each group.

Sample characteristics

For the AA group, mean age was 63.2, 77% were women, and 23% had less than a high school education. For the H group, mean age was 52.9, 93% were women, and 14% had less than high school education.

Results

The content of all six MYLOH domains was found to be relevant and acceptable, but caregivers provided suggestions for clarifying the language and for changing item order. All AA and H participants reported that the word dementia has negative connotations, implying that the person is crazy, “less than,” and incompetent, and that elders would be offended if this term was used to describe their condition. The terms forgetfulness and memory problems were more acceptable. Several AA and H caregivers did not approve of the use of the term depression (for similar reasons) and suggested sadness in its place. The majority of H caregivers requested adding more examples to several items (e.g., memory problems [remembering, planning, making decisions]; mood/behavior problems [anger, sadness, irritation, poor sleep]). H caregivers objected to the term physical health to describe medical problems/diseases, stating that to them it implies physical activity and fitness rather than medical status. They suggested “medical issues,” and to include relevant examples (illness, pain, headache). Eight of 26 AA caregivers strongly recommended discarding four items that addressed caregivers’ knowledge of possible future day-to-day problems with patient’s health and self-care, stating that these questions were too broad and “no one could predict the future.” Several important new themes emerged in both AA and H interviews and generated new items.

Theme 1: Knowing what the patients’ prescribed medications are and when and how to administer them, but not following the instructions because of concerns that medications could be useless or harmful.

This produced a new item: “I have concerns about one or more of the medications (e.g., I worry about the safety or value of what is prescribed).”

Theme 2: Knowing what symptoms to watch for and what to report to health care provider.

This generated a second new item: “When new or rapidly worsening changes happen, I know what to watch for and what to report to his/her health care provider.”

Theme 3: Knowing what to do when patient has a health related emergency yielded a third new item: “When new or rapidly worsening changes happen, I know when I need immediate assistance and I should call 911 or get other emergency medical help.”

Some of the most extensive changes made as a result of AA and H interviews occurred in the caregiver self-care domain. Both AA and H participants reported that in their cultures, caregiving is considered an honor and a privilege; it is not acceptable for caregivers to speak of their own needs and self-care, though most participants reported that they neglect their self-care and that they wish that they could better meet their own needs.

Selected Quote, H: “In our culture, caring for self is self-indulgent and is not acceptable when there is a duty to be fulfilled.”

In sharp contrast to White caregivers, the question “I know what to do when I can no longer be a primary hands-on caregiver” was found to be unacceptable and offensive to most AA and H participants, who stated that not providing care is not an option. This item was consequently discarded because the concepts of recognizing and accepting that a time might come when a caregiver is no longer able to provide care, and that it might become necessary to seek help with caregiving, are captured by other items worded in a more acceptable way; for example, “I know what to do if I have a personal crisis and cannot provide care or help with care as I usually do.” Other items were rephrased to frame caregiver self-care from the perspective of caring for self to be able to better meet care recipients’ needs. For example, the item “I am meeting my own expectations as a caregiver” was changed to “I am taking care of myself so that I can continue to care for him or her” (e.g., I take breaks when needed).

Renaming the questionnaire

Throughout this manuscript, we refer to our newly developed questionnaire as MYLOH, but the original name of this instrument was Partnering for Better Health–Living with Chronic Illness: Dementia (PBH-LCI:D; Sadak et al., 2015). We renamed the questionnaire based on feedback from AA and H caregivers that including the word dementia in the title was stigmatizing and could limit the acceptability of the instrument. Caregivers encouraged us to use the term loved one instead of the care recipient or a person living with dementia to convey the importance of a loving, caring relationship. They also advised that the title include an action word (verb) that reflects caregiving activities.

Final MYLOH questionnaire

The culturally tailored MYLOH contains 29 items (21 knowledge and eight skills questions) grouped into six domains, rated using a uniform 5-level response scale. Scores can range from 0 to 116, with lower scores suggesting the need for caregiver coaching. MYLOH has a sixth-grade reading level, and requires <20 min to complete as a paper and pencil self-report. Final MYLOH domains and sample questions are shown in Figure 2.

Figure 2.

MYLOH conceptual framework.

Discussion

We used a rigorous method for creating PRO instruments (Acaster et al., 2012; Patrick et al., 2011a, 2011b) to develop a new caregiver-focused, clinically informed measure for use in clinical care and research on health care for people with dementia. We found that both experts and caregivers identify systematic assessment of caregivers’ needs in managing patients’ health and their own self-care as a missing link in the clinical care of people living with dementia, substantiating the need for this work. Building on concept elicitation interviews, cognitive interview focus groups confirmed that this PRO method identified concepts and domains that represent the full range of concerns of both caregivers and clinical providers, which were subsequently confirmed by exploratory factor analysis. MYLOH has excellent face and construct validity and reliability and has been culturally tailored to increase its generalizability in use with diverse caregivers.

Innovation

The novelty of this work is its use of a formal PRO method to effectively negotiate between the perspectives of the two primary partners in clinical care for people with dementia, health care providers/experts and family caregivers. These perspectives were reconciled and negotiated, evolving into a harmonized, usable, and culturally/linguistically equivalent instrument.

Lessons Learned

The PRO method can only produce a valid, reliable, and broadly generalizable instrument if the initial development/validation sample is representative of the intended user population. Due to the homogeneity of our initial Phase 1 and 2 samples, the most significant changes to MYLOH’s language resulted from tailoring for cultural/linguistic equivalence. These efforts indicate that it is possible to create a single questionnaire that is culturally equivalent and acceptable to participants from three groups (White, African American, and Hispanic) whose caregiving contexts and expectations may differ in some important ways (Herdman et al., 1998).

Relevance to Clinical Care

MYLOH has many potential uses in clinical care. We envision its use in iteratively assessing, prioritizing, and monitoring caregivers’ engagement in patients’ health management and evaluating coaching needs, as either a structured clinical interview or as a caregiver self-report measure. Regardless of the method of administration, MYLOH can provide clinicians and caregivers with a framework for mutual engagement around caring for the health of people living at home with dementia.

Limitations

The present work has several limitations. The participating professionals were highly experienced and had chosen dementia as a major focus of their work; only one was a primary care generalist. Primary care providers with limited knowledge of dementia may contribute different insights. The initial sample of caregivers was mainly White, relatively financially secure, and experienced in caregiving, and the cultural tailoring phase included a relatively small sample of minority caregivers insufficient to establish full measurement equivalence. Moreover, the broad acceptance by caregivers of MYLOH-defined elements of knowledge and skill indicated a high degree of “readiness” to assume and maintain caregiving responsibilities; MYLOH does not assess readiness as a domain.

Next Steps

Knowledgeable and engaged health care consumers have better health outcomes (Hibbard et al., 2004), and caregivers’ ability to provide high quality care at home depends on the state of their own health and wellness (Vitaliano, Zhang, & Scanlan, 2003). It is therefore reasonable to hypothesize that individuals with dementia will experience better health and fewer health crises when their caregivers are knowledgeable, engaged, cared for, and well themselves. MYLOH can serve as a vehicle for facilitating clinician/caregiver communication, and identifying caregiver needs for coaching.

Future studies are needed to assess MYLOH performance with caregivers at various points in their caregiving careers and stages of readiness and in larger culturally, linguistically, and economically diverse samples. Further work is required to test its responsiveness to change and its application in intervention studies designed to improve caregivers’ management of their care recipients’ health. With this additional work and development of computer adaptive and short forms, MYLOH could be a candidate for future inclusion in the National Institute of Health Patient Reported Outcomes Measurement System.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this work was provided by the John A Hartford and the Robert Wood Johnson Foundations.

Author Biographies

Tatiana Sadak, assistant professor (Psychosocial and Community Health, University of Washington School of Nursing), is a specialist in geriatric psychiatry and dementia research and clinical care. Her research, teaching, and clinical work are focused on improving communication and building partnerships between clinicians and patient/caregiver dyads and on improving dementia health services. She was a primary investigator for this study, and she contributed to the study conceptualization, design, data gathering, analysis, interpretation, and writing of the manuscript.

Jacob Wright is a research assistant and project manager. He contributed to the thematic analysis of qualitative interview material, reconciliation of discrepant interpretations, and revision of the manuscript.

Soo Borson, MD, Professor Emerita (Geriatric Psychiatry, University of Washington), is a specialist in dementia care and research at the clinical and health systems levels. She has developed several translational tools designed to fill quality gaps in the health care of individuals with dementia and their family caregivers. She contributed to the study conceptualization, design, analysis, and interpretation of data and to the writing and editing of the manuscript.

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