Caregiver–provider communication about pain in persons with dementia

Abstract

Background

Pain in older persons with dementia is both under-detected and under-managed. Family caregivers can play an important role in addressing these deficiencies by communicating their care recipient’s symptoms and behaviors to medical providers, but little is known about how caregivers and providers approach pain-related discussions in the context of dementia. The goal of this study was to explore how ambulatory care providers and family caregivers of persons with dementia view pain communication.

Methods

In-depth, semi-structured interviews were conducted with family caregivers (n = 18) and healthcare providers involved in dementia care (n = 16). Interviews focused on three specific content areas: (1) caregivers’ roles in communicating about pain in persons with dementia, (2) challenges experienced when communicating about pain in persons with dementia, and (3) strategies and recommendations for optimizing communication in this context. All interviews were audio-recorded, transcribed, and analyzed using the constant comparative method of data analysis.

Results

Caregivers and providers described various roles that caregivers assumed in communication processes, such as serving as historians, interpreters, and advocates. They identified two key features of problematic communication—receipt of inadequate information and interpersonal conflict about the care recipient’s pain—and articulated how ambiguity around pain and dementia, as well as preexisting beliefs and emotions, contributed to communication challenges. They also offered several suggestions to improve caregiver–provider communication processes, including the use of (1) written records to enhance the accuracy of caregivers’ reports and ensure that providers had specific information to inform symptom management and treatment plans, (2) pain scales and follow-up discussions to establish baseline data and clarify treatment recommendations, and (3) collaboration and rapport-building strategies to validate the caregivers’ contributions and maximize a team-based decision-making.

Conclusion

Receipt of inadequate information and interpersonal conflict are key challenges to caregiver–provider communication regarding pain in persons with dementia. Written records, pain scales, and rapport-building strategies may help to address these challenges.

Keywords

caregiving dementia pain older adults communication

Introduction

An estimated 70% of older persons with dementia reside in the community (Alzheimer’s Association, 2018), up to 60% of whom experience bothersome pain (van Kooten et al., 2016) and nearly half experience pain-related activity limitations (Hunt et al., 2015). Pain is associated with poor quality of life (Snow et al., 2009; Torvik et al., 2010), emotional disturbance (Bair et al., 2003; Boakye et al., 2016), social withdrawal (Mellado et al., 2016; Smith, 2017), sleep impairments (Boakye et al., 2016), and increased health service use (Gaskin & Richard, 2012). Its effects extend beyond the individual, exacting a toll on family relationships (Riffin et al., 2016; West et al., 2012) and on caregivers’ physical and emotional well-being (Martire et al., 2019; Nah et al., 2020).

Despite its prevalence and impact, pain is greatly under-detected and under-managed in individuals with dementia (Hunt et al., 2015). Although a range of factors may affect the accuracy of pain identification in this population (Hadjistavropoulos et al., 2014), a primary challenge to identifying and managing pain among affected persons is impaired communication (Hadjistavropoulos, 2005). Progressive loss of memory, language, and decision-making limit an individual’s capacity to verbalize pain symptoms and the need for treatment. In this context, family caregivers often assume a primary role in communicating with healthcare providers (Brorson et al., 2014; Wolff et al., 2015; Wolff & Roter, 2011). However, the accuracy of their reports may vary according to their own experience, education, training in pain assessment, and by the race and likeability of the person being assessed (Hadjistavropoulos et al., 2014; McAuliffe, Nay, O’Donnell, Fetherstonhaugh, 2009).

Few studies have examined caregiver–provider communication about pain in the context of dementia. The majority of these studies have been conducted in residential care and hospice settings, and typically consider the perspective of only one member of the caregiver–provider dyad. Studies of family caregivers indicate that they commonly experience challenges in achieving effective communication and teamwork, receive inconsistent guidance from providers about pain management, and desire more personalized and trusting relationships (Chi et al., 2018; Kelley et al., 2013; Lichtner et al., 2016; Oliver et al., 2014). Studies of nursing home staff and hospice providers suggest that they value the input of family caregivers, but experience both difficulty balancing the family’s wishes with the resident’s needs and frustration when information and support are rejected by family members (Corbett et al., 2016; Dobbs et al., 2014; Monroe et al., 2015). Moreover, time pressures may act as a barrier to in-depth discussions with family caregivers (Riffin, Wolff, & Pillemer, 2021) and limit their ability to provide personalized guidance with respect to pain identification and management (Corbett et al., 2016).

Although prior research offers an important window into the types of interpersonal challenges that likely exist within caregiver–provider dyads, our understanding of caregiver–provider communication regarding pain in persons with dementia has been limited in two ways. First, it is not clear whether and how the issues identified in residential care and hospice extend to ambulatory care settings where caregivers frequently accompany the patient to the visit (Wolff et al., 2015; Wolff & Roter, 2011), and where organizational structures (office space and time constraints), caregiver responsibilities (healthcare proxy and emergency contact), and patient goals (independence and comfort) likely differ. A better understanding of communication challenges in ambulatory care is critical as these early interactions can set the stage for caregiver–provider dynamics later in the disease trajectory, for example, when the individual with dementia enters residential care. Second, with rare exceptions (Buffum & Haberfelde, 2007), there has been little exploration of potential strategies for addressing caregiver–provider communication challenges in this setting. Identifying strategies that are endorsed by family caregivers and ambulatory care providers can help to ensure that future interventions are clinically feasible and acceptable to both groups.

The present study addresses these knowledge gaps by exploring how ambulatory care providers and family caregivers of persons with dementia view pain communication, with a specific focus on: (1) family caregivers’ roles in communicating about pain in persons with dementia, (2) challenges faced when attempting to communicate about pain and dementia, and (3) recommendations for enhancing caregiver–provider communication. The study includes family caregivers of individuals with varying degrees of both pain and dementia severity and healthcare providers from a range of outpatient settings to reflect the broad representation of specialties and disciplines with which caregivers interact. Given our interest in understanding what providers and caregivers think about their interactions, we used in-depth interviews to explore participants’ reasoning and attitudes.

Methods

Study setting and participants

A combination of purposive (targeting information-rich cases) and maximum variation sampling (targeting a wide range of diverse participants) (Crabtree & Miller, 1999; Marshall, 1996) was used to recruit ambulatory care providers from diverse medical specialties and family caregivers of persons with varying degrees of severity in dementia and pain symptoms. Providers were informed of the opportunity to participate electronically (by email) and in person (at practice staff meetings). They were recruited from varied clinical settings, including internal medicine, geriatrics, neurology, and emergency medicine, to reflect the range of specialists with whom caregivers of persons with dementia may communicate. Providers were eligible if they provided clinical services to persons with comorbid dementia and chronic pain for at least 1 year.

Family caregivers were recruited from medical practices via clinician referral and from community settings via flyers posted at senior service agencies and caregiving support groups. Caregivers were eligible if they provided at least 8 hours of care per week to a relative or friend (age 65 or older) with dementia of any subtype and chronic pain, defined as pain on most days of every month for the past 3 months. Additional eligibility criteria included being over the age of 21, English-speaking, and cognitively intact, defined by a score of 10 or lower on the Blessed Orientation-Memory-Concentration Test (BOMC) (Katzman et al., 1993).

The study protocol was approved by the Weill Cornell Medicine Institutional Review Board. All participants provided written informed consent; caregiver participants received US$15 in the form of a gift card.

Interview guides

Interview guides for healthcare providers and caregivers were developed and iteratively reviewed by an advisory panel of experts, including a geriatrician, a gerontologist, a nurse practitioner, and a geriatric pain specialist. Initial revisions were made based on expert feedback to improve the overall organization and question wording. Subsequent refinements were made to clarify questions to enhance understanding and expand on themes that were identified in the latest interviews.

The interview guides for healthcare providers and family caregivers covered identical content. Interviews began by asking participants for background information, including caregivers’ role in patient care as well as information about the care recipient’s dementia and pain characteristics. Specifically, caregivers were asked to describe the evolution of their care recipient’s memory problems, formal assessment, and diagnosis. They were also asked about the history, nature, and extent of their care recipient’s pain, including the duration, frequency, and location of the pain problem(s). Subsequent questions asked participants to describe the nature of communication between caregivers and healthcare providers regarding pain, identify challenges to communication, and provide recommendations for making improvements. Participants were also asked to describe their experiences with and challenges in differentiating between pain expressions and dementia symptoms. The last set of questions asked for participants’ feedback on adapting the Pain in Advanced Dementia (PAINAD) tool for family caregivers as part of a future intervention.

Data collection and analysis

Data collection occurred between March 2019 and October 2019. Participant characteristics were recorded using a self-administered questionnaire. Semi-structured in-depth interviews lasting approximately 20–30 min were conducted by two interviewers with expertise in developmental psychology and nursing, and training in qualitative methods. The interviewers were trained together and discussed the interview process and strategies for eliciting input from participants. Each interview was audio-recorded and transcribed. Interviews continued until thematic saturation was reached, that is, the point at which additional interviews yielded no new information (Crabtree & Miller, 1999).

Data analysis was performed using the constant comparative method, whereby transcripts were continuously reviewed to identify new themes and ideas (Boeije, 2002; Hsieh & Shannon, 2005). A semantic approach was used to code explicitly stated ideas, attitudes, and experiences. All transcripts were first read word-for-word to derive ideas and themes capturing key concepts from the data. Codes were then compared both within and across interviews and grouped based on underlying similarity. Themes were applied back to the transcripts using line-by-line inductive coding. Deviant case analysis was used to identify data elements that disconfirmed patterns identified in the data (Seawright, 2016). Separate coding structures were developed for provider data and caregiver data. The structures were iteratively refined over the course of data analysis. Two trained coders independently coded all transcripts. Differences in the application of codes were resolved through discussion until consensus was reached. There were no major disagreements with respect to the coding rationale, only minor differences in the application and presence of codes. A third, independent coder coded a randomly selected sample of transcripts to assess interrater reliability and consistency. Average consistency was 95% (range: 66–100%) for provider transcripts and 88% (range: 64–100%) for caregiver transcripts. The threshold for inclusion of a code in the present study was set to 80% agreement. Dedoose 8.0.25 was used for data management and analysis.

Trustworthiness

Trustworthiness in data collection and analysis was maintained by applying several techniques outlined by Lincoln and Guba (1985). First, both interviewers used memo writing throughout data collection to reflect on their own assumptions, ideas, and experiences, thereby reducing the potential for personal biases that may influence the research. Second, all transcripts were reviewed and checked line-by-line against the audio recordings to confirm accuracy of the transcription process and that no personal ideas of the researchers were incorporated into the study. Third, to enhance rigor and objectivity in data analysis, two coders met regularly to discuss and compare all codes, sub-codes, and categories until consensus was reached (Lincoln & Guba, 1985). Fourth, throughout data analysis, the coders sought to identify data elements that disconfirmed patterns (i.e., deviant case analysis) (Seawright, 2016) and developed an audit trail to document all analytic decisions and interpretations (Saldaña, 2015).

Results

Thematic saturation was achieved after interviewing 16 healthcare provider and 18 family caregiver participants. Participant characteristics are shown in Table 1. Healthcare providers represented diverse specialties: geriatrics (n = 8), emergency medicine (n = 4), neurology (n = 3), and internal medicine (n=1). Family caregivers included adult children (n = 12), spouses (n = 4), and other relative (n = 1, niece) who spent an average of 38.0 h each week providing informal care.

Table 1.

Participant characteristics.

Healthcare provider characteristics (N = 16)
Female, n(%)	12 (75.0)
Race/ethnicity, n(%)	—
White (non-Hispanic)	10 (62.5)
African American	0 (0.0)
Asian	5 (31.2)
Hispanic	1 (6.3)
Specialty, n(%)	—
Geriatrics	8 (50.0)
Internal medicine	1 (6.3)
Emergency medicine	4 (25.0)
Neurology	3 (18.8)
Years practicing, M ± SD	17.1 ± 12.7
Hours per week spent seeing outpatients, M ± SD	21.0 ± 11.9
Self-reported % of patients with dementia, M ± SD	36.6 ± 22.4
Self-reported % of patients with dementia who also have pain, M ± SD	41.0 ± 25.0

Family caregiver characteristics (N = 18)
Caregiver age, M ± SD	61.9 ± 11.3
Female, n(%)	15 (83.3)
Race/ethnicity, n(%)
White (non-Hispanic)	9 (50.0)
African American	3 (16.7)
Asian	2 (11.1)
Hispanic	3 (16.7)
Multiracial	1 (5.5)
Relationship to patient, n(%)
Spouse	5 (27.8)
Adult child	12 (66.7)
Other relative	1 (5.6)
Hours per week spent providing assistance, M ± SD	38.0 ± 48.3
Frequency attending patient’s healthcare visits	—
All of the time (every visit)	13 (72.2)
Almost all of the time	4 (22.2)
Rarely (less than once a year)	1 (5.6)

Major themes are grouped into three sections: (1) caregiver roles in communication; (2) characteristics of problematic caregiver–provider communication, including influences underlying problematic communication; and (3) recommendations for enhancing caregiver–provider communication. Because caregivers’ and providers’ responses were largely consistent within each theme, we discuss differences when they occur, rather than providing a systematic comparison across the two groups.

Caregiver roles

Participants described three primary roles that family caregivers assumed in pain-related consultations: historians, interpreters, and advocates for their care recipient.

Historian

Providers discussed their reliance on caregivers for contextual information about their patients’ existing health conditions, pain medications, and behaviors (Tables 2(a)–(c)). One physician summarized: “When a family member comes with a patient who has cognitive impairment, they are often providing a lot of the history and the context for us to understand the reason for the visit, and also to understand [the patient’s] baseline level of functioning” (emergency medicine physician). Family caregivers also endorsed their role as historian and record-keeper of the patient’s symptoms and medications (Table 2(c)). They reported providing “a rundown of the known conditions and what the [patient] is experiencing” (adult child caregiver).

Table 2.

Caregiver roles.

Historian

a. “[Caregivers] know some historical information about the patient that helps put [the patient’s pain] in perspective.” (geriatrician)

b. “Knowing… [patient’s] medical history as well… a knee replacement or hip issues, cognitive, those things. What medications they’re taking and whether or not their causing benefit or not… [Caregivers] can give us an accurate history and the patient cannot.” (geriatrician)

c. [Patient] doesn’t really know what all her medications are and she gets confused with saying what her vitamins are and what her medications are and what they are for… She’s like amazed I know her health history, but I’ve going with her, I would say, at least over 10 years now to the doctor and now more frequently she’s allowing me to go with her.” (niece caregiver)

Interpreter

d. “[Caregivers] can provide [information] for how to interpret the facial expressions or body posture… for someone who is really not very verbal or may not know how to verbalize pain.” (geriatrician)

e. “If I have to turn to somebody else for interpretation then… [patient’s] family members or caregivers will tell me, ‘My dad’s in pain.’ I may not even realize [the patient is] in pain, but they are. [Caregivers] know what the patient is normally like.” (emergency medicine physician)

f. “The more time you spend with the person you know, you are able to really know the cues.” (adult child caregiver)

Advocate

g. “[It was] incumbent on my mother and I to communicate the stress [patient] was having and advocate for him to get some kind of medication to calm him down and alleviate his suffering.” (adult child caregiver)

h. “If the patient cannot communicate well but they seem to be in some sort of pain, the caregiver will bring it up.” (neurologist)

i. “We have fewer caregivers who are kind of pushing for strong medications, but there is always the challenge of like, I want to address the caregiver’s needs and their worries and address any pain in the patient.” (geriatrician)

Interpreter

Participants commonly referred to caregivers as interpreters of their care recipient’s pain symptoms (Tables 2(d)–(g)). According to one provider, caregivers help to inform “how [physicians] can interpret what we are seeing and hearing.” Caregivers ascribed their ability to recognize and interpret their care recipient’s pain to their personal understanding of and regular contact with their care recipient (Table 2(f)). One caregiver explained:

“First of all, she’s my mom, so I know her eyes… If her eyes seem squinty, you know it’s kind of a look on her face that I can recognize something’s not, you know [right]. Her fist, obviously. That’s an obvious one, but she’ll like make a fist, so I can say that’s pain” (adult child caregiver).

Advocate

Family caregivers also reported assuming the role of the patient’s advocate particularly when the patient “can’t speak to how he feels about anything… it all comes from me” (spouse caregiver). They felt responsible for and took ownership of conveying the patient’s health concerns and needs to providers (Table 2(j)). Providers offered similar observations regarding the caregiver’s role in communicating pain-related issues on the patient’s behalf (Table 2(k)).

Characteristics of problematic communication

Participants’ descriptions of problematic communication clustered into two themes: (1) receipt of inadequate information and (2) interpersonal conflict about the patient’s pain.

Receipt of inadequate information

A key feature of problematic communication was the receipt of insufficient or inaccurate information. Although providers described relying on caregivers for details about the patient’s health history, they cited concerns about the reliability and accuracy of caregivers’ reports about patients’ pain behaviors. Such apprehensions were described by one geriatrician: “We don’t always know if we are getting the right kind of answer… if the [patient’s] family member is not so perceptive.” Another questioned, “Is the family interpreting the [patient’s behavioral] cues correctly?” (geriatrician). In general, providers perceived caregivers’ pain communication to be “very variable depending upon how knowledgeable and healthcare literate the family member or the caregiver is” (emergency medicine physician). They voiced particular reservations about the accuracy of information provided by caregivers who had limited exposure to the person with dementia (Tables 3(a) and (b)).

Table 3.

Characteristics of problematic communication.

Receipt of inadequate information

a. “Of course there are moments when the caregiver, although they are there… they may not always been too attentive to the pain and so they might actually have very minimal information about the patient’s pain itself.” (geriatrician)

b. “A family member calling in just to say ‘Oh, I heard my father’s there [in the emergency room]”… they’re maybe not as deeply involved with their family member’s medical care. I think the reliability of those individuals about pain reports… I don’t think they have reliability.” (emergency medicine physician)

c. “I would have liked to have a better understanding, a better answer, the answer they gave me was: ‘You know in the late stages of Alzheimer’s this happens.’” (adult child caregiver)

d. “I try to give them as much information, doctors, as much as I can, but I’m not getting the feedback of what to do.” (adult child caregiver)

Interpersonal conflict about the patient’s pain

e. “A lot of our patients… want to speak for themselves but are not always accurate historians and when you are directing the questions to the caregiver it becomes difficult... the caregiver says, ‘Oh no you’re always complaining of pain’ and the patient says, ‘No I’m not’.” (geriatrician)

f. “I have one patient who comes in and she’s actually quite demented but hangs on by living in a small bubble and she always says she is fine and then I’ll get a phone call from one of her kids whose far away who will say, ‘She is really angry or she is calling me five times a day. Here are all the things that are actually.’” (geriatrician)

g. “Often just by seeing the patient I can tell [that she or he is in pain]. And then we will get a report from either the family member or the aid who will also sometimes give a completely different story.” (neurologist)

h. “My brother was not able to really identify [patient’s] level of pain… For example when she had the shingles, I was aware it was shingles what she was having and my brother thought it was just.... [He] really undermines and doubts my judgment because he’s in such denial.” (adult child caregiver)

Caregivers expressed frustration when receiving general guidance from providers rather than clear, detailed information about the patient’s condition and treatment (Tables 3(c)–(d)). They asserted that the lack of specificity impacted their understanding of the patient’s symptoms and treatment: “I don't really understand [patient’s treatment] because the answers I got were very basic and general” (adult child caregiver). They also described wanting providers to give greater direction about the timing and dosage of pain treatments. One caregiver offered an example: “I would ask, ‘Should we change the dosage [of the medication]?’ The doctor would say, ‘Well, if that’s what you want to do.’ I want [the doctor] to tell me. I thought I’d never get a straight answer… It’s frustrating” (spouse caregiver).

Interpersonal conflict

Another feature of problematic communication was interpersonal conflict about the care recipient’s pain symptoms and treatment. The most commonly reported conflicts involved patient–family disagreements about the individual’s pain history, symptoms, or severity (Tables 3(e)–(g)). Clinicians described difficulty adjudicating dissenting perspectives of care recipients and their family members: “I try and [navigate] between what the patient is saying and what the caregiver is saying about things like frequency and severity of pain and changes in pain. It can be confusing to know what is going on at home when the patient is giving you one story and the caregiver is giving you another story” (geriatrician). Another emphasized, “There is a discrepancy between what the patient and the caregiver is perceiving; it can be a little difficult to know what’s the truth” (geriatrician). Caregivers’ reports corroborated providers’ perspectives on patient–caregiver disagreement, and further highlighted the role of patients’ catastrophizing or minimizing tendencies in pain-related discussions (Table 3(g)): “I noticed that if there is an audience, like, if it’s not just me, [my husband’s] responses are amplified. He is much more showy then about being in pain. I don’t trust his responses particularly when he has an audience” (spouse caregiver).

Addressing and integrating multiple perspectives was deemed to be particularly challenging when individuals beyond the provider–patient–caregiver triad were involved, including other relatives and paid helpers. Providers emphasized the challenge of managing “conflicts between siblings. Or, if there’s a healthcare proxy and the children who are not the healthcare proxy want to also have a say” (geriatrician). They also described how their perspectives on the presence and severity of pain differed from others involved in the patient’s care (Tables 3(g)–(h)). According to an internist, “You see one thing and the spouse sees it and the paid caregiver sees it differently.”

Influences underlying problematic communication

Participants offered possible reasons for problematic provider–caregiver communication, highlighting the ways in which communication processes are influenced by (1) ambiguity about pain and dementia and (2) preexisting beliefs and emotions.

Ambiguity around pain and dementia

Nearly all providers and caregivers reported difficulty evaluating pain in the context of dementia (Tables 4(a)–(c)). For providers, this uncertainty threatened their ability to provide concrete treatment recommendations and anticipatory guidance to caregivers. An internist explained: “With a demented patient, there’s all these unknowns… you could just get to the point of ‘Try some Tylenol and let me know if that works.’” For caregivers, uncertainty about their care recipient’s behavior was viewed as a barrier to accurately reporting the patient’s pain location or symptoms (Table 4(b)), particularly when the individual had multiple health conditions (Table 4(c)). They described lacking confidence in their capacity to recognize and ultimately to communicate their care recipient’s pain to healthcare providers: “I don't feel confident because I don't think I'll ever, ever really know because she can't express it” (adult child caregiver).

Table 4.

Challenges underlying problematic communication.

Ambiguity around pain and dementia

a. “A big problem is how to evaluate any symptom in dementia. It’s so hard and trying to balance what the person’s goals of care are with what you think the diagnosis actually is and how you’re going to measure if it’s getting better or not is more or less impossible.” (geriatrician)

b. “Because [patient] don’t verbalize [her pain]… it’s really hard. It’s really a guessing game because she won’t come out and say ‘Oh, her stomach hurt you know, or leg hurt or her hurt’… we don’t really know.” (adult child caregiver)

c. “[It is] hard to determine the exact source [of pain] because [the patient] has dementia, anxieties, cancer, neuropathy, and back pain.” (adult child caregiver)

Preexisting beliefs and emotions

d. “If [the caregivers] are over-observant or under-observant, too emotionally involved to see things clearly, or have their own issues, then they’re not the most reliable observers.” (internist)

e. “Beliefs in either direction. Either like a real scare of certain prescription medications and opiates… or sometimes just kind of a like an age belief, like ‘Well, of course this person would have some pain. You know, that’s to be expected…’ like they have just an inability or [are] reluctant to kind of engage, in terms of trying things and tracking them.” (geriatrician)

f. “[One of the] biggest challenge with the caregivers… is recognizing that we need to—well, recognizing that we might not be able to totally alleviate the pain… So, sometimes it’s hard, like people expect you to like give them something and you know, we’re just not going to give you oxycodone right off the bat.” (geriatrician)

g. “I will tell you what is really bothering me at this point, because of [patient’s] age you do notice that even the best specialists… [are] trying to make you understand that there is not much that can be done at this point in time.” (adult child caregiver)

Preexisting beliefs and emotions

Several providers asserted that caregivers’ emotions interfered with their ability to provide accurate reports of patient’s pain. Caregiver anxiety was viewed as a barrier to reliable detection and communication about pain (Tables 3(d)–(h)): “There are some instances where I think the family member is really anxious themselves or worried, so they are over-interpreting [the pain]” (geriatrician). Other providers contended that caregivers held certain beliefs about pain (e.g., concern about harm from pain medications or the normality of pain in later life) and sometimes voiced unrealistic expectations for treatment that impeded caregivers’ willingness to engage in the treatment planning process (Tables 3(d)–(f)). They also implicated caregivers’ personality as a barrier to discussing pain management: “A family member will just you know want to say like ‘This is what’s going on’ and something they don't want to investigate further… it's their personality, they just resist, they don't want any help” (geriatrician). As one provider commented, some caregivers may be “in denial, and don’t want to see [pain]” (geriatrician). Caregivers reported similar concerns about providers. They asserted that ageist beliefs led some providers to dismiss the care recipient’s or caregiver’s pain concerns (Table 3(g)). One caregiver remarked, “When [care recipient] tells his pain to the doctors… ‘What do you expect? He’s 92.’ That’s what the neurologist says” (adult child caregiver).

Approaches and recommendations to improve communication

Participants offered suggestions for improving provider–caregiver communication, including the use of written records, pain scales and follow-up discussions, and collaboration and rapport-building strategies.

Written records

Caregivers and providers endorsed the use of written records, such as pain journals as a tool to catalogue the care recipient’s behaviors and identify patterns over time. Providers asserted that bringing these documents to the medical appointments could help to ensure that providers had specific information to inform symptom management and treatment plans (Tables 5(a) and (b)). They cited an additional benefit to adjudicating conflict within the care recipient–caregiver dyad: “It can be important to keep track of the symptoms in a log or something else, so that if we can minimize some of these disagreements between the patient and caregiver about what actually happened, they can see in the moment what tended to work or not work” (geriatrician). Caregivers concurred that families should come prepared with written records to promote accurate information exchange. They specifically recommended bringing documentation of the individual’s behaviors and list of questions to ask providers when they were unsure about their observations (Table 5(c)): “Family members should come with a notebook. Have your questions written down, what you want to ask the doctor, so that you then can explain to them what you have observed… you know is this affecting this or the medication” (niece caregiver).

Table 5.

Approaches and recommendations to improve communication.

Written records

a. “Just having that daily log and then telling the family ‘Okay, let’s just track this for a week… and then we can look back to see what the patterns are and whether our intervention works.’ Because like the worst is… you are trying some new medication or some therapy and then you don’t have any system for tracking what’s happening with that.” (geriatrician)

b. “[Caregivers] get in the habit of being good observers and expressing their observations… ask them to keep a journal… if they are going to see a health care provider to discuss options for management of this chronic pain the best way to do that, the most objective way to do it that… is by providing the physician or the nurse practitioner with a pain journal.” (emergency medicine physician)

c. “I actually think that [caregivers] should write down, like when, what are the circumstances around when the person seems to be demonstrating [pain] either verbally or becomes agitated. Well, you know, what is the person doing? What are they moving into?” (spouse caregiver)

Pain scales and follow-up discussions

d. “[Caregiver] brings the patient in. They say, ‘She’s got pain,’ so we say, ‘Give me a little more information. What do you see? How do you know? Is this something that’s been going on for a long time? Was there an injury, a trauma, a fall? When did it start?... What are you doing about it? What seems to work for it?’” (geriatrician)

e. “Doctor is very thorough and she’s very good and she follows up and she makes phone calls… I really think that’s fantastic.” (adult child caregiver)

Collaboration and rapport building

f. “[Caregivers] can help us figure out you know, is this medication working… and things that might relieve the pain, so like nonpharmaceutical things maybe. And I think all those things kind of help me figure out how to best care for that [patient] in a sense.” (geriatrician)

g. “You have to instill trust in the family member that you are there to take care of their loved one and that you are going to do the best job that you can and that you also are going to listen to what the family member says.” (emergency medicine physician)

h. “Acknowledging that [caregivers] are doing a really good job and making them feel supported and acknowledging the stress that they are already under.” (emergency medicine physician)

i. “The primary doctor, he’s very good. He listens and… he explains things.” (adult child caregiver)

Pain scales and follow-up discussions

Providers endorsed the use of pain scales to initiate discussions about the care recipient’s pain severity (Table 5(d)): “Try to [use] a pain scale on a 0 to 10, with 10 being the worst pain you've ever experienced and 0 being no pain” (emergency medicine physician). Whereas pain scales were viewed as necessary to establish a general pain level, particularly in busy emergency room settings, specific queries and prompts were deemed to be critical for eliciting details from the caregiver about changes in the individual’s behaviors and activities (Table 5(e)). Rather than describing the utility of pain scales, caregivers focused on the benefits of in-depth, thorough conversations about their care recipient’s pain (Table 5(e)). Such discussions were viewed as especially beneficial to clarifying test results and treatment recommendations: “After a couple of visits and tests, [the doctor] called me and said, ‘I want to review with you all the results of the tests, so that you know what’s real and what’s exaggerated,’… so I had a very clear picture” (spouse caregiver).

Collaboration and rapport building

Due to ambiguities regarding the identification and treatment of pain in persons with dementia, providers recommended a collaborative approach to communicating with caregivers. One geriatrician offered an example where she and the family were “trying to figure out what’s going on in [the caregiver’s] mother’s head… we’ve all tried to work together on that.” Another emphasized, “It’s a team. [Caregivers] are kind of the eyes and the ears in a sense” (geriatrician). They believed that productive, meaningful engagement of caregivers in the treatment planning process was critical in helping to determine the efficacy of various pain interventions, including the use of both pharmacologic and non-pharmacologic approaches (Table 3(f)). To encourage open dialogue, several rapport-building strategies were suggested: affirming the caregiver’s input, acknowledging the caregiver’s stress, and instilling trust (Tables 5(g)–(h)). These strategies were viewed as crucial to establishing a cooperative relationship with caregivers. Caregivers confirmed their positive views of providers who were patient, listened, and provided thorough explanations (Table 5(i)). One spousal caregiver underscored the importance “hav[ing] a relationship with the caregiver,” suggesting that providers “engage them [caregivers] and say, ‘Can you please keep me posted? Anything you think I might need to know,’ or maintaining a good relationship… partnership that you have with the caregiver.”

Discussion

This study provides new insights into an under-explored area of dementia-related communication by concurrently exploring the perspectives of family caregivers and ambulatory care providers regarding their conversations about pain symptoms in persons with dementia. Through in-depth interviews, participants shared an array of roles that caregivers assume in pain-related discussions. They also cited key features of problematic communication—receipt of inadequate information and interpersonal conflict—that are largely consistent with research conducted in hospice and nursing homes describing breakdowns in teamwork and discordant family–provider relationships (Chi et al., 2018; Kelley et al., 2013; Monroe et al., 2015). Our study extends this literature by elucidating potential reasons for problematic provider–caregiver communication and describing potential strategies—use of written records, pain scales, and rapport-building strategies—to overcome the identified challenges in ambulatory care.

A primary factor underlying problematic caregiver–provider communication was ambiguity around pain and dementia. While prior studies have documented caregivers’ and providers’ uncertainty about the etiology of pain and cause of behaviors among persons with dementia (Kaasalainen et al., 2007; Kovach et al., 2000; Tarter et al., 2016), our study offers novel insight into how uncertainty can impact information exchange. For providers, such ambiguity compromised their ability to offer anticipatory guidance and concrete treatment recommendations to caregivers. For caregivers, it threatened their ability to serve as accurate reporters of their care recipient’s pain. While our study provides initial evidence of these issues, quantitative research will need to evaluate the pathways through which caregiver and provider uncertainty impacts clinically relevant endpoints, including satisfaction with communication, care quality, and pain management.

Preexisting beliefs and emotions were also identified as impediments to effective communication. Theory and research have underscored the importance of both cognitive factors (perceptions and beliefs) and affective factors (distress and worry) for individual information processing and decision-making. For example, caregivers’ emotions can influence their ability to recognize pain in persons with dementia (Gomez-Gallego et al., 2015) and providers’ negative beliefs about pain in individuals with dementia can lead to under-treatment (Zwakhalen et al., 2007). The present study builds on this literature to demonstrate the impact of these factors on interpersonal communication, particularly caregivers’ abilities to provide accurate historical accounts of pain and providers’ abilities to develop collaborative partnerships with caregivers.

Our findings corroborate prior research describing the roles of family companions in older adults’ medical visits, including their contributions as historians, interpreters, and advocates (Riffin et al., 2020; Riffin, Wolff, & Pillemer, 2021; Vick et al., 2018). While prior studies have traditionally focused on a single caregiver’s interactions within settings of care delivery, our study describes how the involvement of multiple caregivers may impact healthcare communication, particularly providers’ abilities to integrate divergent perspectives and come to a consensus about care plans. Such findings provide empirical support for the tensions described within case reports (Abadir et al., 2011; Erlen, 2005) and conceptual frameworks that acknowledge the complexity and challenges of “shared caregiving” relationships (Adams & Gardiner, 2005; Kemp et al., 2013; Lingler et al., 2008; Sims-Gould & Martin-Matthews, 2010).

Study participants identified several strategies for supporting caregiver–provider interactions that can help to improve pain recognition and management in persons with dementia, including the use of (1) written records (e.g., pain logs and question lists) to aid caregivers in organizing their thoughts in preparation of medical visits and ensure that providers receive specific information to inform symptom management and treatment plans, (2) pain scales and follow-up discussions to establish baseline data and clarify treatment recommendations, and (3) collaboration and rapport-building strategies to validate the caregivers’ contributions and maximize team-based approaches to recognizing and managing pain symptoms. Given the lack of training that family caregivers receive (Burgdorf et al., 2019), a promising next step may be to design a multi-component intervention aimed at training family caregivers in pain identification and communication. Such training could incorporate modules on administering and interpreting pain scales (e.g., PAINAD) and tracking behaviors in pain logs. As time pressures may preclude lengthy education and training delivered by healthcare professionals (Riffin et al., 2020; Riffin, Wolff, & Pillemer, 2021), a technology-based approach, involving online modules and videos, may hold particular merit.

A noted strength of this study was the inclusion of healthcare providers from a range of specialties and family caregivers with diverse healthcare experiences. However, given the qualitative methods used in this study, conclusions cannot be drawn regarding the prevalence of individuals’ experiences, and it is possible that individuals agreeing to participate were not fully representative of all family caregivers and ambulatory care providers. Further, although themes were largely consistent among providers in this study sample, future research will need to systematically compare communication patterns across various settings. This work will be important for tailoring communication-focused interventions to the unique capacity of each care context. For example, interventions for primary care may benefit from leveraging long-term patient–caregiver–provider relationships to proactively manage pain concerns.

Although this study did not collect data on individuals’ receipt of formal training in pain assessment and management, it is likely that family caregivers and medical professionals differ in their prior training and experiences. Such differences may have influenced their perspectives on pain-related communication, particularly with respect to disagreements about the care recipient’s pain history and symptoms. As prior research has documented the lack of role-related training among family caregivers (Burgdorf et al., 2019), future interventions that incorporate caregiver education in pain identification and communication warrant consideration. Finally, because our study did not systematically collect data on the severity of dementia or pain symptoms of care recipients, we are unable to comment on whether and how disease severity impacts caregiver–provider communication processes. Future research will need to assess this information to evaluate how caregiver–provider communication varies at different stages in the disease trajectory.

Conclusion

Although there exist numerous barriers to addressing under-detection and under-treatment of pain in persons with dementia, high-quality communication between family caregivers and healthcare providers is a critical component. The present study provides an important window into this topic by elucidating family caregivers’ and healthcare providers’ perspectives on dementia- and pain-related communication, highlighting the ways in which ambiguity about pain and dementia symptoms and preexisting beliefs and attitudes may impede effective information exchange. Study results point to several clinically feasible strategies for optimizing caregiver-provider communication, including the use of written records, pain scales, and rapport-building strategies. These findings support efforts to develop and test communication-focused interventions that combine practical approaches (i.e., education in pain identification and management) with empathy skills training to improve care quality and outcomes among persons living with dementia.

Footnotes

Acknowledgments

The authors would like to thank Anita Nirenberg and Sama Joshi for their assistance with data collection and coding.

Declaration of conflict of interest

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

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by grants from National Institute on Aging of the National Institutes of Health [P30 AG022845-15S1; K01AG061275]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

ORCID iD

Catherine Riffin

Catherine Riffin is an Assistant Professor of Psychology in Medicine in the Division of Geriatrics and Palliative Medicine at Weill Cornell Medical College. Her research examines how older adults and their family caregivers manage chronic illness, with a specific focus on caregivers’ interactions with the healthcare system.

Karlee Patrick is a doctoral student in Clinical Psychology at Kent State University. Her current research interests include pain, neuropsychiatric symptoms, and caregiver burden in dementia.

Sylvia Lin is a first-year medical student at the NYU Long Island School of Medicine. She is pursuing a career in medicine with a focus on geriatrics and palliative care.

Cary Reid is the Irving Sherwood Wright Associate Professor of Medicine and Director of the Office of Geriatric Research in the Division of Geriatrics and Palliative Medicine at Weill Cornell Medical College. His research focuses on improving the management of pain among older persons. Current projects include testing non-pharmacologic strategies for pain among older persons in both clinical and non-clinical settings, identifying barriers to the use of self-management strategies for pain, and examining optimal strategies for managing pain across ethnically diverse populations of older persons.

Keela Herr is the Kelting Professor in Nursing, Associate Dean for Faculty, and Co-Director of the Csomay Center for Gerontological Excellence at the University of Iowa. Dr Herr leads an interdisciplinary program of pain research, scholarly, and professional activities focused on the problem of pain in older adults, with emphases in assessment strategies, improving practices through translation research and end-of-life care.

Karl Pillemer is the Hazel E. Reed Professor in the Department of Human Development and Professor of Gerontology in Medicine at Weill Cornell Medicine. A major focus of his research has been on the nature and dynamics of family caregiving for impaired older people, which he has been carrying out over the past two decades with funding from the National Institutes of Health and other sources.

References

Abadir

P. M.

Finucane

T. E.

McNabney

M. K.

(2011). When doctors and daughters disagree: Twenty-two days and two blinks of an eye. Journal of the American Geriatrics Society, 59(12), 2337-2340. doi:10.1111/j.1532-5415.2011.03700.x.

Adams

Gardiner

(2005). Communication and interaction within dementia care triads. Dementia, 4(2), 185-205. doi:10.1177/1471301205051092.

Alzheimer’s Association (2018). 2018 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 14, 367-429. https://doi.org/10.1016/j.jalz.2018.02.001.

Bair

M. J.

Robinson

R. L.

Katon

Kroenke

(2003). Depression and pain comorbidity. Archives of Internal Medicine, 163, 2433-2445. doi:10.1001/archinte.163.20.2433.

Boakye

P. A.

Olechowski

Rashiq

Verrier

M. J.

Kerr

Witmans

Baker

Joyce

Dick

B. D.

(2016). A critical review of neurobiological factors involved in the interactions between chronic pain, depression, and sleep disruption. The Clinical Journal of Pain, 32(4), 327-336. doi:10.1097/AJP.0000000000000260.

Boeije

(2002). A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Quality and Quantity, 36(4), 391-409. doi:10.1023/A:1020909529486.

Brorson

Plymoth

Örmon

Bolmsjö

(2014). Pain relief at the end of life: Nurses’ experiences regarding end-of-life pain relief in patients with dementia. Pain Management Nursing, 15(1), 315-323. doi:10.1016/j.pmn.2012.10.005.

Buffum

M. D.

Haberfelde

(2007). Moving to new settings: Pilot study of families perceptions of professional caregivers pain management in persons with dementia. Journal of Rehabilitation Research and Development, 44(2), 295. doi:10.1682/JRRD.2006.06.0074.

Burgdorf

Roth

D. L.

Riffin

Wolff

J. L.

(2019). Factors associated with receipt of training among caregivers of older adults. JAMA internal medicine, 179(6), 833-835.

10.

Chi

N.-C.

Demiris

Pike

K. C.

Washington

Oliver

D. P.

(2018). Pain management concerns from the hospice family caregivers' perspective. American Journal of Hospice and Palliative Medicine, 35(4), 601-611. doi:10.1177/1049909117729477.

11.

Corbett

Nunez

K.-M.

Smeaton

Testad

Thomas

A. J.

Closs

S. J.

Briggs

Clifton

Gjestsen

M. T.

Lawrence

(2016). The landscape of pain management in people with dementia living in care homes: A mixed methods study. International Journal of Geriatric Psychiatry, 31(12), 1354-1370. https://doi.org/10.1002/gps.4445.

12.

Crabtree

B. F.

William

W. M.

(1999). Doing qualitative research (2nd ed.). Sage Publications.

13.

Dobbs

Baker

Carrion

I. V.

Vongxaiburana

Hyer

(2014). Certified nursing assistants’ perspectives of nursing home residents’ pain experience: Communication patterns, cultural context, and the role of empathy. Pain Management Nursing, 15(1), 87-96. doi:10.1016/j.pmn.2012.06.008.

14.

Erlen

J. A.

(2005). When patients and families disagree. Orthopaedic Nursing, 24(4), 279-282. doi:10.1097/00006416-200507000-00009.

15.

Gaskin

D. J.

Richard

(2012). The economic costs of pain in the United States. The Journal of Pain, 13(8), 715-724. doi:10.1016/j.jpain.2012.03.009.

16.

Gomez-Gallego

Gomez-Garcia

Ato-Lozano

(2015). Addressing the bias problem in the assessment of the quality of life of patients with dementia: Determinants of the accuracy and precision of the proxy ratings. The journal of nutrition, health & aging, 19(3), 365-372. doi:10.1007/s12603-014-0564-7.

17.

Hadjistavropoulos

(2005). Assessing pain in older persons with severe limitations in ability to communicate. In Gibson

Weiner

(Eds), Pain in Older Persons (pp. 135-151). IASP Press.

18.

Hadjistavropoulos

Herr

Prkachin

K. M.

Craig

K. D.

Gibson

S. J.

Lukas

Smith

J. H.

(2014). Pain assessment in elderly adults with dementia. Lancet Neurology, 13(12), 1216-1227. doi:10.1016/S1474-4422(14)70103-6.

19.

Hsieh

H.-F.

Shannon

S. E.

(2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277-1288. doi:10.1177/1049732305276687.

20.

Hunt

L. J.

Covinsky

K. E.

Yaffe

Stephens

C. E.

Miao

Boscardin

W. J.

Smith

A. K.

(2015). Pain in community-dwelling older adults with dementia: Results from the national health and aging trends study. Journal of the American Geriatrics Society, 63(8), 1503-1511. doi:10.1111/jgs.13536.

21.

Kaasalainen

Coker

Dolovich

Papaioannou

Hadjistavropoulos

Emili

Ploeg

(2007). Pain management decision making among long-term care physicians and nurses. Western Journal of Nursing Research, 29(5), 561-580. doi:10.1177/0193945906295522.

22.

Katzman

Brown

Fuld

Peck

Schechter

Schimmel

(1983). Validation of a short orientation-memory-concentration test of cognitive impairment. American Journal of Psychiatry, 140, 734-739.

23.

Kelley

Demiris

Nguyen

Oliver

D. P.

Wittenberg-Lyles

(2013). Informal hospice caregiver pain management concerns: A qualitative study. Palliative Medicine, 27(7), 673-682. doi:10.1177/0269216313483660.

24.

Kemp

C. L.

Ball

M. M.

Perkins

M. M.

(2013). Convoys of care: Theorizing intersections of formal and informal care. Journal of Aging Studies, 27(1), 15-29. doi:10.1016/j.jaging.2012.10.002.

25.

Kovach

C. R.

Griffie

Muchka

Noonan

P. E.

Weissman

D. E.

(2000). Nurses’ perceptions of pain assessment and treatment in the cognitively impaired elderly: It's not a guessing game. Clinical Nurse Specialist, 14(5), 215-220. doi:10.1097/00002800-200009000-00011.

26.

Lichtner

Dowding

Allcock

Keady

Sampson

E. L.

Briggs

Corbett

James

Lasrado

Swarbrick

Closs

S. J.

(2016). The assessment and management of pain in patients with dementia in hospital settings: A multi-case exploratory study from a decision making perspective. BMC Health Services Research, 16(1), 427. https://doi.org/10.1186/s12913-016-1690-1.

27.

Lincoln

Y. G.

Guba

(1985). Naturalistic inquiry. Sage Publications.

28.

Lingler

J. H.

Sherwood

P. R.

Crighton

M. H.

Song

M.-K.

Happ

M. B.

(2008). Conceptual challenges in the study of caregiver-care recipient relationships. Nursing Research, 57(5), 367-372. doi:10.1097/01.NNR.0000313499.99851.0c.

29.

Marshall

M. N.

(1996). Sampling for qualitative research. Family Practice, 13(6), 522-526. doi:10.1093/fampra/13.6.522.

30.

Martire

L. M.

Zhaoyang

Marini

C. M.

Nah

Darnall

B. D.

(2019). Daily and bidirectional linkages between pain catastrophizing and spouse responses. Pain, 160(12), 2841-2847. doi:10.1097/j.pain.0000000000001673.

31.

McAuliffe

Nay

O’Donnell

Fetherstonhaugh

(2009). Pain assessment in older people with dementia: literature review. Journal of advanced nursing, 65(1), 2-10. doi:10.1111/j.1365-2648.2008.04861.x.

32.

Mellado

B. H.

Falcone

A. C.

Poli-Neto

O. B.

Rosa E Silva

J. C.

Nogueira

A. A.

Candido-Dos-Reis

F. J

(2016). Social isolation in women with endometriosis and chronic pelvic pain. International Journal of Gynaecology and Obstetrics, 133(2), 199-201. https://doi.org/10.1016/j.ijgo.2015.08.024.

33.

Monroe

T. B.

Parish

Mion

L. C.

(2015). Decision factors nurses use to assess pain in nursing home residents with dementia. Archives of Psychiatric Nursing, 29(5), 316-320. doi:10.1016/j.apnu.2015.05.007.

34.

Nah

Martire

L. M.

Zhaoyang

(2020). Perceived patient pain and spousal caregivers' negative affect: The moderating role of spouse confidence in patients' pain management. Journal of Aging and Health, 32(9), 1282-1290. https://doi.org/10.1177/0898264320919631.

35.

Oliver

D. P.

Washington

Kruse

R. L.

Albright

D. L.

Lewis

Demiris

(2014). Hospice family members’ perceptions of and experiences with end-of-life care in the nursing home. Journal of the American Medical Directors Association, 15(10), 744-750. doi:10.1016/j.jamda.2014.05.014.

36.

Riffin

Fried

Pillemer

(2016). Impact of pain on family members and caregivers of geriatric patients. Clinics in Geriatric Medicine, 32(4), 663-675. doi:10.1016/j.cger.2016.06.010.

37.

Riffin

Wolff

J. L.

Estill

Prabhu

Pillemer

K. A.

(2020). Caregiver needs assessment in primary care: Views of clinicians, staff, patients, and caregivers. Journal of the American Geriatrics Society, 68, 1262-1270. doi:10.1111/jgs.16401.

38.

Riffin

Wolff

J. L.

Pillemer

K. A.

(2021). Assessing and addressing family caregivers' needs and risks in primary care. Journal of the American Geriatrics Society, 69(2), 432-440.

39.

Saldaña

(2015). The coding manual for qualitative researchers. Sage.

40.

Seawright

(2016). The case for selecting cases that are deviant or extreme on the independent variable. Sociological Methods & Research, 45(3), 493-525. https://doi.org/10.1177/0049124116643556.

41.

Sims‐Gould

Martin‐Matthews

(2010). We share the care: Family caregivers’ experiences of their older relative receiving home support services. Health & Social Care in the Community, 18(4), 415-423. doi:10.1111/j.1365-2524.2010.00913.x.

42.

Smith

(2017). ”On their own”: social isolation, loneliness and chronic musculoskeletal pain in older adults. Quality in Ageing and Older Adults, 18(2), 87-92. https://doi.org/10.1108/QAOA-03-2017-0010.

43.

Snow

A. L.

Chandler

J. F.

Kunik

M. E.

Davila

J. A.

Balasubramanyam

Steele

A. B.

Morgan

R. O.

(2009). Self-reported pain in persons with dementia predicts subsequent decreased psychosocial functioning. The American Journal of Geriatric Psychiatry, 17, 873-880. doi:10.1097/jgp.0b013e3181ad4f73.

44.

Tarter

Demiris

Pike

Washington

Parker Oliver

(2016). Pain in Hospice Patients With Dementia. American Journal of Alzheimer’s Disease & Other Dementiasr, 31(6), 524-529. doi:10.1177/1533317516653825.

45.

Torvik

Kaasa

Kirkevold

Rustøen

(2010). Pain and quality of life among residents of Norwegian nursing homes. Pain Management Nursing, 11, 35-44. doi:10.1016/j.pmn.2009.01.001.

46.

van Kooten

Binnekade

T. T.

van der Wouden

J. C.

Stek

M. L.

Scherder

E. J. A.

Husebø

B. S.

Smalbrugge

Hertogh

C. M. P. M.

(2016). A review of pain prevalence in Alzheimer’s, vascular, frontotemporal and lewy body dementias. Dementia and Geriatric Cognitive Disorders, 41, 220-232. https://doi.org/10.1159/000444791.

47.

Vick

J. B.

Amjad

Smith

K. C.

Boyd

C. M.

Gitlin

L. N.

Roth

D. L.

Roter

D. L.

Wolff

J. L.

(2018). “Let him speak:” a descriptive qualitative study of the roles and behaviors of family companions in primary care visits among older adults with cognitive impairment. International Journal of Geriatric Psychiatry, 33(1), e103-e112. https://doi.org/10.1002/gps.4732.

48.

West

Usher

Foster

Stewart

(2012). Chronic pain and the family: The experience of the partners of people living with chronic pain. Journal of Clinical Nursing, 21(23–24), 3352-3360. https://doi.org/10.1111/j.1365-2702.2012.04215.x.

49.

Wolff

J. L.

Clayman

M. L.

Rabins

Cook

M. A.

Roter

D. L.

(2015). An exploration of patient and family engagement in routine primary care visits. Health Expectations, 18(2), 188-198. https://doi.org/10.1111/hex.12019.

50.

Wolff

J. L.

Roter

D. L.

(2011). Family presence in routine medical visits: A meta-analytical review. Social Science & Medicine, 72(6), 823-831. https://doi.org/10.1016/j.socscimed.2011.01.015.

51.

Zwakhalen

S. M.

Hamers

J. P.

Peijnenburg

R. H.

Berger

M. P.

(2007). Nursing staff knowledge and beliefs about pain in elderly nursing home residents with dementia. Pain Research and Management, 12(3), 177-184. https://doi.org/10.1155/2007/518484.