The experiences,priorities,and perceptions of informal caregivers of people with dementia in nursing homes: A scoping review

Abstract

Background

Person-centered care has been shown to increase desired outcomes for people with dementia, yet informal caregivers’ dissatisfaction with care is often reported. For those living in a nursing home, informal caregivers are uniquely situated to provide key insights into the individual’s care. However, little is known of the informal caregivers’ perspective, which hinders efforts to improve their satisfaction with person-centered nursing home care. Thus, we examined the comprehensive experiences, priorities, and perceptions of informal caregivers of nursing home residents with dementia.

Methods

In collaboration with stakeholders, a scoping review of Medline (Ovid), EMBASE.com, CINAHL (EBSCO), the Cochrane Library (Wiley), and PsycINFO (Ovid) databases from January 2000 to July 2020 was conducted. Data were extracted reflecting the experiences, priorities, and preferences of caregivers of people with dementia residing in nursing homes.

Results

We identified 114 articles that revealed nine themes: (1) communication, (2) transition to nursing home, (3) quality of care, (4) quality of life, (5) informal caregiver role, (6) knowledge of dementia, (7) end-of-life preferences, (8) medication use to manage neuropsychiatric behaviors, and (9) finances.

Conclusion

Informal caregivers described aspects of care that led to both positive and negative experiences with and perceptions of nursing home care. The shortcomings in communication were discussed most frequently, indicating a high priority area. While researchers define the identified themes individually, informal caregivers perceive them to be interwoven as they relate to person-centered care delivery. Although we did not assess the quality of included articles, by identifying themes relevant to caregivers’ perspectives of nursing home care, our findings may help to inform efforts to optimize caregivers’ satisfaction with nursing home care for residents with dementia.

Keywords

person-centered care Alzheimer’s disease dementia nursing homes caregivers

The delivery of person-centered care is a core principle of high-quality nursing home care (Fazio et al., 2018). Person-centered care has been shown to decrease agitation and increase quality of life for people with dementia (Chenoweth et al., 2009; Kim & Park, 2017) as well as improve satisfaction with health care for informal caregivers (Epstein et al., 2010). These desirable outcomes are key considerations for informal caregivers (i.e., unpaid caregivers who have a close relationship to the care recipient) when deciding to transition a person with dementia from the community to a nursing home (Roth et al., 2015). For clarity, the term caregiver refers to informal caregivers, and formal caregivers are referred to as physician or staff throughout the article.

Models of person-centered dementia care rely on the dyad of the person with dementia and their caregiver (Borson & Chodosh, 2014). The shared history between a caregiver and care recipient makes the caregiver a central member of the team to inform person-centered care. Though they may not be perfect proxies reflecting residents’ preferences (Crespo et al., 2012), caregivers of people with dementia are uniquely situated to provide insight into residents’ preferences as the progressive disease affects residents’ ability to express their own desires. While caregivers remain involved in activities after the person with dementia’s transition to a nursing home, caregivers report dissatisfaction with the quality of care provided (Gaugler, 2005; Levy-Storms & Miller-Martinez, 2005; Tornatore & Grant, 2004). Accordingly, incorporating the caregivers’ perspective into improvement efforts may increase caregivers’ perceptions of the provision of high-quality, person-centered nursing home care.

Research to date has focused on specific aspects of caregiving in nursing homes. For example, studies have considered the experience and effects of the nursing home transition on the caregiver (Afram et al., 2015; Grasel, 2002) and described caregiver involvement in activities (Gaugler, 2005). Yet, to our knowledge, the collective experiences, priorities, and perceptions of caregivers of nursing home residents with dementia have not been examined in the literature. A comprehensive understanding of this perspective can be used to drive interventions that consider the complex reality of caregiving for nursing home residents with dementia. Given the limited evidence reflecting the “real world” of caregiving, there is a need to explore the perspective of caregivers to lay a foundation for improvements in the perception of person-centered care delivery during and following the transition to a nursing home. Therefore, a scoping review to synthesize the broad literature on caregiving for nursing home residents with dementia is warranted (Arksey & O’Malley, 2005). Unique to our scoping review is the incorporation of stakeholders to provide a concrete connection between academia and the practical concerns of caregivers. As a result, the research question that guided this stakeholder-driven scoping review was: What are the experiences, priorities, and perceptions of informal caregivers of nursing home residents with dementia?

Methods

Our scoping review is part of a larger study examining non-pharmacologic approaches to nursing home care for people with dementia (ClinicalTrials.gov identifier NCT03442322). The parent study capitalizes on the ongoing engagement of a 19-member Advisory Committee, ensuring representation of the stakeholder voice throughout the study (e.g., caregivers, nursing home administrators, and staff). Our literature review amplified the stakeholder’s voice by incorporating the Advisory Committee’s feedback throughout all phases of the project, from study design through implementation and data analysis (Esmail et al., 2015; Selby et al., 2012). Our methods were guided by a scoping review framework and critical regular input from our Advisory Committee (Levac et al., 2010). The stages of our review included identifying the research question, identifying relevant studies, selecting studies, charting the data, collating, summarizing, and reporting the results, and consultation (Levac et al., 2010). We met with the Advisory Committee in person to initiate the study and then consulted with them monthly to ensure a stakeholder-grounded approach to the scoping review. The stakeholders’ recommendations included (a) revisions to the research question, (b) suggestions for alternative search terms (e.g., nursing care facility and lay caregiver), (c) relevant themes to consider (e.g., safety and end-of-life preferences), and (d) meaningful interpretation of results. During a consultation, the Advisory Committee suggested that finances be considered as a standalone theme rather than a component in the transition to the nursing home theme. The resulting themes reflect the coordinated efforts of the research team and Advisory Committee to summarize and interpret the literature reporting the experiences, priorities, and preferences of caregivers of residents with dementia. This review follows the Preferred Reporting Items for Systematic Review and Meta-Analysis extension for scoping reviews (PRISMA-ScR) guidelines (Tricco et al., 2018) (Supplementary Appendix A).

After key terms were identified through our stakeholder collaboration, the search strategies were developed by a health sciences librarian (RLT) using subject headings and keywords for each concept: family caregiver AND dementia or Alzheimer’s disease AND nursing homes (Supplementary Appendix B). We searched Medline (Ovid), EMBASE.com, CINAHL (EBSCO), the Cochrane Library (Wiley), and PsycINFO (Ovid). Results were limited to articles published in English from 2000 to May 17, 2018, and then updated on July 2, 2020, to capture any new articles that emerged after May 2018. Limiting articles to no earlier than January 1, 2000, aligns with the release of the Institute of Medicine’s (2000) report brief on Improving the Quality of Long-Term Care, which initiated the person-centered care and quality improvement movement in nursing homes. Citations were downloaded from each database, and duplicate citations were removed in EndNote prior to screening (Clarivate Analytics, Boston, MA).

Given the benefit of a scoping review to include various types of information, we included both peer-reviewed (e.g., literature reviews) and non-peer-reviewed publications (e.g., expert opinion), with the exception of grant reviews and conference abstracts. Articles were included if they (1) examined the transition to or residence in a nursing home for people with dementia and (2) included informal (i.e., unpaid) caregivers. To capture a variety of residential institutional settings and reflect the varied availability of dementia-specific residential care units across the world, international literature was included that reflected long-term care settings analogous to nursing homes in the United States. Articles were excluded if (1) results did not capture the perspective of caregivers of people with dementia, (2) the population addressed community-based caregivers or formal caregivers, and (3) they referenced institutionalization but a transition to long-term care did not occur.

DistillerSR (Evidence Partners, Ottawa, Canada) was used to screen records and chart data. The initial sample (n = 3840) was screened by the first and third authors at the title and abstract levels, achieving >90% consensus. Following calibration with the first author by co-reviewing 100 articles to achieve >90% agreement for full-text eligibility, two trained research assistants aided the first and third authors in examining articles. The first author and another reviewer updated the search in July 2020 (n = 1243), screening all titles, abstracts, and full texts, achieving >90% agreement at each level. Conflicts were resolved through discussion. Data charting in DistillerSR was conducted in pairs using forms tested by the first and third authors prior to use to ensure consistency and accuracy across the team. In mixed caregiver samples, data charting focused on results from informal caregivers only. Data charted included study design, setting, geographic location, sample size, sample demographics (e.g., caregiver–person with dementia relationship), primary objective, outcomes, and results.

An analysis of caregiver perspectives was performed using an iterative approach. This method involved reading the articles, developing codes from the results sections of each manuscript (e.g., raw quotes from participants, statistical findings, and authors’ interpretations), refining codes, and identifying emerging themes from the codes that reflected caregivers’ experiences with or priorities and/or preferences related to nursing home care (Creswell & Plano Clark, 2017). The research team reviewed the data weekly and engaged with the Advisory Committee members monthly to situate the themes from each of their perspectives, determine salience of individual study findings, and increase the internal validity of our results in reflecting priorities of stakeholders rather than researchers (Creswell & Miller, 2000; Creswell & Plano Clark, 2017). During analysis and interpretation, our stakeholders aided the research team to operationalize the quality of care theme for the review, which was determined to be care that prioritized safety and person-centeredness. The team presented concepts of quality of care (e.g., the Agency for Healthcare Research and Quality’s Six Domains of Health Care Quality) to orient the Advisory Committee as they developed a stakeholder-driven definition of quality of care for this theme.

Results

Descriptive summary

We screened a total of 5083 articles, resulting in a final sample of 114 articles (Figure 1). The original search resulted in 104 articles, and the updated search in July revealed 13 additional articles. During data extraction, we identified three articles from the original sample that were present in an included systematic review. As such, we kept the review and eliminated the three studies from the original sample. Of our 114 studies, 77 were qualitative, 12 were quantitative, 12 employed a mixed-methods approach, 8 were literature reviews, and 5 were expert opinion. Among the 101 articles that were not literature reviews or expert opinions, studies were conducted in Europe (n = 30), United Kingdom (n = 20), Canada (n = 19), United States (n = 17), Australia (n = 11), and Asia (n = 4). Among the diverse types of relationships between caregiver and person with dementia, spouse (n = 74) and child (n = 68) were most common (Supplementary Appendix C).

Emerging themes

The following nine themes emerged from the literature with active engagement of our Advisory Committee reflecting the experiences, priorities, and perceptions of caregivers of people with dementia residing in a nursing home: (1) communication, (2) transition to nursing home, (3) quality of care, (4) quality of life, (5) informal caregiver role, (6) knowledge of dementia, (7) end-of-life preferences, (8) medication use for neuropsychiatric behavior management, and (9) finances (Supplementary Appendix D). For brevity of the text, we present the two most recent publications for each result in the manuscript. A comprehensive list of all articles referencing is available in Supplementary Appendix C.

Communication (n = 84 articles, 74% of sample)

This theme addressed the scope of communication topics and relationships in which caregivers are involved. Four communication dyads were reflected: (a) caregiver and staff, (b) caregiver and physician, (c) caregiver and person with dementia, and (d) staff and person with dementia. Nursing home staff included nursing assistants, nurses, ancillary staff (e.g., housekeeping), and rehabilitation providers.

Caregiver and staff (n = 60 articles)

Caregivers prioritized communication regarding decision-making and status updates for the person with dementia (Carter et al., 2018; Petyaeva et al., 2018). They wanted staff to acknowledge their expertise in the care of the person with dementia given their shared history as well as be considered a member of the care team, not an external inconvenience (Kerns et al., 2018; Stephan et al., 2015). Good communication was considered a prerequisite for providing high-quality care and building trust (de Boer et al., 2019; Reid & Chappell, 2017). Communication with staff became increasingly necessary during the later stages of dementia to help maintain the relationship between caregiver and person with dementia (Førsund & Ytrehus, 2018).

Negative experiences, which included infrequent and inconsistent communication due to staff shortages and turnover, led to perceptions of feeling unheard, mistrust, and dissatisfaction with the quality of care (Brazil et al., 2018; de Boer et al., 2019). Moreover, the lack of communication caused confusion for caregivers and created difficulties in care-related decision-making (Searle & Basset, 2012; Thompson et al., 2020). The poor quality of communication led to caregivers’ uncertainty about the person with dementia’s well-being (Graneheim et al., 2014; Sury et al., 2013).

Caregiver and physician (n = 12 articles)

Caregivers isolated the physician’s responsibility in communication to include significant medical status changes and the plan of care for the person with dementia. They prioritized communication with the physician as particularly important for feeling satisfied with care, and they experienced disappointment when communication was infrequent because it prevented caregivers from fulfilling their role as advocates and decision makers (McCormack et al., 2017; Palmer, 2013). Caregivers perceived communication to be ineffective when the physician lacked an understanding of dementia (Aggarwal et al., 2003). Nonetheless, physician communications that occurred regularly and conveyed an understanding of the person with dementia as an individual enhanced caregivers’ trust in care delivery and improved perceptions of care quality (Kerns et al., 2018; van Dijk & Buijck, 2018).

Caregiver and person with dementia (n = 32 articles)

While Strang et al. (2006) reported no change in communication between caregivers and people with dementia following placement, others indicated a change had indeed occurred (Hennings & Froggatt, 2019; Peacock et al., 2014). Nonetheless, some caregivers decreased the frequency of facility visits when they felt their efforts to communicate had become futile due to the progression of the disease (Gladstone et al., 2006). Despite these difficulties, caregivers prioritized finding a way to remain close to the person with dementia (Hemingway et al., 2016). Caregivers frequently experienced challenges in communicating with the person with dementia, particularly during the advanced stages of the disease (Hennings & Froggatt, 2019; Thompson et al., 2020). Strategies that facilitated continued communication included being patient during conversations (Ducharme et al., 2005), recalling shared memories (Henkusens et al., 2014), and prioritizing physical communication (e.g., hand holding) (Stacpoole et al., 2017).

Staff and person with dementia (n = 36 articles)

Caregivers prioritized communication and nonverbal interactions that were person-centered, calm, and respectful (van Dijk & Buijck, 2018; Verloo et al., 2018). Communication was a priority to minority caregivers who perceived higher satisfaction and better quality of care when staff were able to engage with the person with dementia using the same language (Kiwi, 2017; Nunez et al., 2018). In contrast, a language discordance between the staff and person with dementia contributed to increased problematic behaviors such as agitation (Kiwi, 2017; Kong et al., 2010). Caregivers’ trust and satisfaction were negatively affected when communications were perceived to be derogatory, rushed, or impersonal (McKay, 2012; Palmer, 2009).

Transition to nursing home (n = 64 articles, 56% of sample)

This theme included the process of securing long-term care placement, the support offered by staff during and after the transition, the emotional experience of the caregiver, and the change in family dynamics following placement. These perceptions were intertwined in the literature, highlighting the complexity of institutionalization.

Caregivers often perceived the transition to be challenging. Numerous factors exacerbated the transition, such as lack of information on the process (Cole et al., 2018; Gaugler et al., 2015), a complicated procedure of referral and admission (Gaugler et al., 2015; Johansson et al., 2014), difficulty finding a dementia-capable facility with an open bed (Gaugler et al., 2015; Rognstad et al., 2020), and long delays between selecting a facility and receiving a placement (Raivio et al., 2011; Shanley et al., 2012). In particular, minority caregivers noted the difficulty in finding an ethno-specific facility (Chang, 2007; Shanley et al., 2012). Despite some caregivers receiving assistance from healthcare workers preceding and during the transition (e.g., social workers), this support was often inadequate and confusing (Fitzpatrick & Grace, 2019).

Following placement, caregivers addressed the support they wanted to or did receive from staff. While multiple studies reported on caregivers’ desire for support during and after the transition (Carter et al., 2018; Fitzpatrick & Grace, 2019), only one noted that they were satisfied with the support they received (Sury et al., 2013). Caregivers characterized positive support to include when staff facilitated a care partnership with caregivers, opportunities for peer support groups, and relationship-building training between the caregiver and person with dementia (Carter et al., 2018; Cottrell et al., 2018). Perceived support from staff increased caregivers’ confidence and trust in the care provided by the facility (Johansson et al., 2014; Sury et al., 2013).

During and after the transition, caregivers reported a variety of emotional experiences. Institutionalization often occurred following internal conflict within themselves and external conflict with family members (Afram et al., 2015; Cole et al., 2018). The transition was stressful (Cole et al., 2018; Groen-van de Ven et al., 2017), filled with guilt and self-blame for their perceived inability to provide care in the home (Hennings & Froggatt, 2019; Midtbust et al., 2020) as well as anxiety over the well-being of the person with dementia (Johansson et al., 2014; Midtbust et al., 2020). Some caregivers expressed that death would have been easier than their feelings of grief and loss associated with the transition (Cottrell et al., 2018; Hennings & Froggatt, 2019). Aside from the loss of their caregiving role, some reported also losing their community-based support system post-placement due to stigma associated with nursing home placement (Cottrell et al., 2018). Indeed, caregivers often found help following the transition from support groups rather than family members and friends (Hennings & Froggatt, 2019). They also experienced regret when circumstances were out of their control, such as the loss of personal items (van Hoof et al., 2016). Moreover, they felt shame when problematic neuropsychiatric behaviors that were typically exhibited at home by the person with dementia were now displayed in the “public” venue of the facility (Bourbonnais & Ducharme, 2015; Hemingway et al., 2016).

Some caregivers expressed negative emotions because the person with dementia appeared to receive better care in the nursing home than in the community (Westacott & Ragdale, 2015). However, others expressed relief due to their perception of good care following the transition (Carter et al., 2018; Kiwi et al., 2018). Some noted a decreased sense of guilt as the dementia progressed and the person with dementia became emotionally unresponsive to their presence (Hennings & Froggatt, 2019). Others assuaged their negative emotions by remaining regularly involved and visiting frequently (Peacock et al., 2014; Sarabia-Cobo et al., 2016).

Along with the emotional experience of institutionalization, caregivers reported challenges regarding family dynamics. They experienced conflict with family members who did not agree with the placement (Chang, 2007; Cole et al., 2018), particularly for spousal caregivers (Bramble et al., 2009) and for those belonging to cultures in which filial piety is prominent (Cole et al., 2018; Kwon & Tae, 2012). Nonetheless, the experience of the transition was easier for families who supported each other in the decision for placement (Kiwi et al., 2018).

Quality of care (n = 64 articles, 56% of sample)

Our review revealed positive and negative aspects of nursing home care prioritized by caregivers, including staff-related considerations, homeliness of the facility, and non-pharmacologic interventions used by staff.

Poor quality of care was described in the context of staff shortages and a high turnover rate (Carter et al., 2018; Nunez et al., 2018), impersonal care (Palmer, 2013; van Hoof et al., 2016), staff who lacked dementia-specific skills (Hemingway et al., 2016; Midtbust et al., 2020), and people with dementia who were not engaged in enriching activities (de Boer et al., 2019; Palmer, 2009). The negative perceptions of care quality affected caregivers’ initial willingness to seek institutional care (Chang, 2007; Kong et al., 2010) and their confidence in the decision (Johansson et al., 2014). For some, perceived poor quality of care led to caregivers visit more frequently to monitor care (Graneheim et al., 2014; Johansson et al., 2014) or to transfer the person with dementia to a different facility (Chang, 2007; Palmer, 2009).

High-quality care was described as person-centered care that supported safety and well-being of the person with dementia (Brett et al., 2018; Duxbury et al., 2013), preserved their self-identity and personhood (McAllister et al., 2017; van Dijk & Buijck, 2018), and promoted collaboration with caregivers (Verbeek et al., 2012). The physical environment of the facility was also a priority. A home-like atmosphere with outdoor space (de Boer et al., 2019; Seiger Cronfalk et al., 2017), personalized care (Bramble et al., 2009; Robinson et al., 2010), and some semblance of privacy to facilitate the caregiver–person with dementia relationship (Duxbury et al., 2013; Førsund & Ytrehus, 2018) were associated with high-quality care. Additionally, the use of non-pharmacologic interventions and activities to maintain health of the person with dementia (Brett et al., 2018; Kerns et al., 2018), promote engagement in activities of daily living (de Boer et al., 2019; Stacpoole et al., 2017), and address physical pain and emotional distress (Daly Lynn et al., 2017; Petyaeva et al., 2018) were seen as improving the quality of care. Additionally, minority caregivers reflected on the particular importance of cultural considerations (Kiwi et al., 2018; Nunez et al., 2018).

Quality of life (n = 55 articles, 48% of sample)

This theme included personal hygiene, appearance, autonomy, and sexual expression, and the availability of person-centered activities.

Caregivers perceived quality of life of the person with dementia to be poor when they presented with a disheveled appearance, poor hygiene, and/or poor nutritional status (Graneheim et al., 2014; van Dijk & Buijck, 2018). They prioritized the person with dementia’s ability to retain a sense of autonomy (Brazil et al., 2018; Cole et al., 2018). Indeed, several studies indicated that caregivers believed the ability of the person with dementia to engage in safe sexual expression was an important demonstration of human behavior and valuable to maintaining their quality of life (Bauer et al., 2014; Pinho & Pereira, 2019). Aside from the emotional implications on the caregiver, this topic was logistically challenging due to uncertainty regarding the person with dementia’s ability to consent (Wiskerke & Manthorpe, 2018).

Caregivers perceived a better quality of life for people with dementia when person-centered activities (physical and/or social) were available that considered the choice and preferences of the person with dementia and improved their level of engagement (de Boer et al., 2019; Rognstad et al., 2020). The absence of person-centered activities was perceived as a detriment to quality of life (Brett et al., 2018; Rosendahl et al., 2016). Minority caregivers also noted a decreased quality of life when activities were not person-centered due to language barriers or conflict with cultural norms (Kiwi et al., 2018; Shanley et al., 2012).

Informal caregiver role (n = 37 articles, 33% of sample)

This theme captured the diverse activities in which caregivers engage with the person with dementia. Caregivers expressed their desire to remain involved in care following placement to manage the newly redefined caregiver role (Cottrell et al., 2018; Hennings & Froggatt, 2019). This was accomplished through decision-making, advocating, taking the person with dementia out of the facility for leisure or appointments, and engaging in caregiving activities (e.g., mealtimes and dressing) (Carter et al., 2018; Groen-van de Ven et al., 2017). While perceived burden decreased for many following placement (Ducharme et al., 2005; Raivio et al., 2011), caregivers struggled with their role change and were concerned about losing this role due to their diminished involvement in daily activities (Crawford et al., 2015; Westacott & Ragdale, 2015).

Knowledge of dementia (n = 35 articles, 31% of sample)

Staff skills and knowledge specific to dementia were a priority for caregivers. The perceived lack of staff dementia-specific knowledge and skills led to dissatisfaction with care (Carter et al., 2018; Stephan et al., 2015), concern regarding institutionalization (Graneheim et al., 2014; Johansson et al., 2014), and a lack of confidence in the staff’s ability to properly prescribe medications or manage pain (Lawrence et al., 2011; Zweig & Galvin, 2014). Conversely, caregivers’ perception of adequate staff dementia training was associated with higher quality care (Gaugler et al., 2015; Reid & Chappell, 2017), and they wanted staff to share that knowledge (Seiger Cronfalk et al., 2017). Moreover, caregivers reported that their own lack of dementia-specific knowledge led to difficulties in coping with the disease progression (Kiwi, 2017; Thompson et al., 2020) and conversations about end-of-life (Carter et al., 2018; Thompson et al., 2020).

End-of-life preferences (n = 16 articles, 14% of sample)

This theme centered on advanced care planning for the person with dementia, which was perceived to be an important conversation between caregivers and staff (Groen-van de Ven et al., 2017; Saini et al., 2016). While some caregivers delegated end-of-life care planning to the medical team (Caron et al., 2005), several studies reported that caregivers perceived end-of-life care decisions to be their responsibility as primary decision makers (Ashton et al., 2016; Brazil et al., 2018). Caregivers prioritized advocating for the person with dementia’s end-of-life preferences (e.g., religious considerations and use of interventions to prolong life) (Barker et al., 2017; Brazil et al., 2018). They wanted staff to be compassionate to their situation as their decisions often produced difficult emotions and ethical dilemmas (McCleary et al., 2018; Sarabia-Cobo et al., 2016). Caregivers desired the aforementioned considerations for more communication with nursing home staff and for them to provide high-quality care during end-of-life (Bolt et al., 2019a, 2019b; Midtbust et al., 2020).

Medication use for neuropsychiatric behavior management (n = 11 articles, 10% of sample)

Caregivers prioritized being involved in decision-making regarding medication use (Kerns et al., 2018; van Dijk & Buijck, 2018). The literature reveals their preference to avoid the use of off-label psychotropic medications to manage neuropsychiatric behaviors, favoring non-pharmacologic approaches (Kerns et al., 2018; Nunez et al., 2018). When neuropsychiatric behaviors necessitated medication use, caregivers preferred to avoid medications that led to the person with dementia becoming a “zombie” (Kerns et al., 2018; Zweig & Galvin, 2014). Hemingway et al. (2016) found that some caregivers distrust medications prescribed to manage behaviors, believing that medications worsened the mental status of the person with dementia. Trust of medication use to manage behaviors hinged on the caregiver’s opinions of the staff’s ability to prescribe medications appropriately (Carter et al., 2018; Zweig & Galvin, 2014).

Finances (n = 6 articles, 5% of sample)

This theme discussed finances in regard to facility quality and financial burden following institutionalization. Higher cost facilities were associated with better care, which was then perceived as a barrier to finding a good facility for the person with dementia (Cole et al., 2018; Kwon & Tae, 2012). This concern increased caregivers’ stress during the transition process (Chang, 2007; Cole et al., 2018), led to financial burden, and raised concern over their own future financial viability and care needs (Kiwi, 2017; Seiger Cronfalk et al., 2017). The high cost of institutional care over an indeterminate amount of time was a significant source of concern and financial difficulty (Cole et al., 2018).

Discussion

Our scoping review sought to capture the experiences, priorities, and perceptions of caregivers of people with dementia who reside in nursing homes. While reviews have previously described aspects of caregiving in silos (Laitinen & Isola, 1996; Schulz et al., 2004), to our knowledge, none have synthesized themes to provide a comprehensive representation of caregiver perspectives or included key stakeholders in the process. Our method to consult the Advisory Committee during study conception and data analysis promoted “real world” representation of the caregiver’s perspective. Given the diversity of caregiver relationships (e.g., spouse, child, and sibling), this review represents a wide variety of caregivers of people with dementia who reside in an institution. Additionally, our large sample size (N = 114) reflects the need for the collation and synthesis of this information to facilitate translation of this evidence to practice to optimize caregivers’ perceptions of person-centered nursing home care.

Communication was the most commonly reported theme in the review. This was expected given that communication is the primary method for caregivers to obtain information about the person with dementia in order to stay involved in decision-making and advocacy. Although interventions exist to improve communication between nursing home staff, physicians, people with dementia, and caregivers (Buhr et al., 2006; Burgio et al., 2001), caregivers continue to report frustration and dissatisfaction with communication. Caregivers also noted that communication with the person with dementia was critical to obtaining feedback on care quality and remaining connected, which is consistent with available literature (Egan et al., 2010; Whitlatch et al., 2006). Furthermore, our review revealed that the experience of the transition to the nursing home was primarily reported to be negative due to caregivers’ negative feelings and a perceived lack of support during the transition process, which is consistent with current evidence (Lindman Port, 2004; Schulz et al., 2004). Evidence on effective interventions for improving communication among stakeholders (e.g., caregivers and staff) includes clearly delineating roles, increasing the frequency of communications, and being patient and compassionate (Egan et al., 2010; Laitinen & Isola, 1996). Accordingly, incorporating communication interventions into routine practice, particularly during the transition to the nursing home, may lead to improvements in and better caregiver perceptions of person-centered, high-quality care.

We highlighted quality of care, quality of life, and knowledge of dementia as distinct themes, but these concepts were frequently interwoven in the literature. While researchers use concrete definitions for quality of care (Hanefeld et al., 2017) and quality of life (Yin et al., 2016), caregivers appear to prioritize the effects of care on the quality of life of the person with dementia. This sentiment was reiterated by our Advisory Committee during conversations regarding quality of life. Although caregivers perceived themselves to be the expert regarding the person with dementia, consistent with available literature (Chenoweth et al., 2009; Lindman Port, 2004), our findings highlighted that they wanted facility staff to be complementary experts in dementia care. For caregivers, person-centered care extends beyond basic care provision to maintain quality of life. Indeed, our findings reveal that it encompasses the skills and knowledge of the staff, the environment in which people with dementia live, and how staff interact with residents. These are key components of successful person-centered, high-quality nursing home care for people with dementia from the perspective of caregivers (Koren, 2010). Research should reflect caregivers’ complex and multidimensional conceptualization of “quality” when considering efforts to improve their satisfaction with person-centered care delivery.

Although caregivers of other nursing home resident populations may have similar experiences and concerns that may influence their satisfaction with care (Schulz et al., 2020; Shippee et al., 2017), our findings shed light on considerations specific to caregivers of people with dementia. People with dementia require unique care that addresses the sequelae of dementia, such as sundowning and progressive loss of memory and physical function (Canevelli et al., 2016). Moreover, this decline often precedes and necessitates the transition from the community to the nursing home (Afram et al., 2015; Grasel, 2002). Given that this resident population often cannot articulate their needs and preferences due to the progression of the disease, the caregiver is uniquely situated to provide care staff with information on resident preferences and routines prior to institutionalization. Future research could examine the similarities and differences between these caregivers and those of other resident populations. Consistent with current literature, caregivers expressed frustration with their lack of engagement in care provision, decision-making, and advocacy (Brodaty & Donkin, 2009; Gaugler, 2005; Walsh et al., 2017). Nonetheless, evidence suggests that increasing their involvement is associated with improved perceptions of care quality (Hamann, 2014). Another opportunity to enhance caregivers’ perceptions of quality involves engaging caregivers of people with dementia in conversations about finances, particularly as people with dementia reside in nursing homes longer than other populations (Sabbagh et al., 2003; Stephens et al., 1991). Addressing caregivers’ discontent related to their involvement with care delivery and financing of care may improve perceptions of quality and satisfaction with person-centered nursing home care.

Limitations

Although a primary strength of the review is that it includes diversity in the types of publications to capture the breadth of literature surrounding a topic, our review was limited to English language publications due to resource constraints for translation. Despite representation of literature from countries across the world, the language boundary may have resulted in underrepresenting diverse populations of caregivers in countries where English is not the primary language. Additionally, we limited the search to articles published after 2000, which could have led to the exclusion of relevant publications. Last, the methodology employed (Levac et al., 2010) does not include a quality appraisal of the literature. While our findings provide a broad conceptualization of the perspectives of caregivers of nursing home residents with dementia, the direct application of our findings is limited due to potential bias or methodological concerns.

Future directions

Our review synthesizes the experiences, priorities, and perceptions of caregivers of people with dementia in nursing homes. Building on these findings, future work may focus on tool development to measure caregiver satisfaction with person-centered care provided to people with dementia residing in nursing homes. This call is consistent with efforts promoting core outcome set development for dementia clinical trials, such as the Core Outcome Measures in Effectiveness Trials (COMET) Initiative (https://www.comet-initiative.org). A search of the COMET database revealed that resident quality of life was the only one of the nine identified themes represented in dementia core outcome sets (Moniz-Cook et al., 2008) that were not specific to community-dwelling individuals (Reilly et al., 2020). Measuring caregiver satisfaction with nursing home care in dementia core outcome sets can identify areas for improvement and monitor change. Additional future directions include evaluating strategies for implementing available evidence into practice. Interventions exist to address the themes that emerged in our scoping review, such as inadequate communication between caregiver–staff or staff–person with dementia communication (Hartmann et al., 2018; Machiels et al., 2017; Morris et al., 2018); however, intervention strategies are not consistently adopted as routine clinical practice. As such, future research should include stakeholder-driven (e.g., resident, caregiver, and provider) pragmatic trials to understand the barriers and facilitators of implementing interventions aimed at promoting caregiver satisfaction with care delivery for nursing home residents with dementia.

Conclusions

Our scoping review, performed in collaboration with stakeholders, provided insight into the comprehensive experience of caregivers of people with dementia who reside in nursing homes. Though our findings should be applied cautiously, we revealed themes relevant to caregivers to guide initiatives aimed at improving their satisfaction with dementia care in nursing homes. Caregivers are critical partners in the care for nursing home residents with dementia, particularly as the disease advances. As such, addressing their priorities is recommended when seeking to optimize the delivery of person-centered, high-quality care. Further research is needed to (a) consistently and reliably capture caregivers’ perspectives of nursing home care and (b) implement existing best practices into routine clinical care to ensure the consistent delivery of person-centered, high-quality nursing home care for people with dementia.

Supplemental Material

sj-pdf-1-dem-10.1177_14713012211012606 – Supplemental Material for The experiences, priorities, and perceptions of informal caregivers of people with dementia in nursing homes: A scoping review

Supplemental Material, sj-pdf-1-dem-10.1177_14713012211012606 for The experiences, priorities, and perceptions of informal caregivers of people with dementia in nursing homes: A scoping review by Alexandra E Harper, Lauren Terhorst, Marybeth Moscirella, Rose L Turner, Catherine V Piersol and Natalie E Leland in Dementia

Footnotes

Acknowledgements

The authors thank Bonnie Perry for her thoughtful contributions to the article and Allison Giannone, OTD, OTR/L, Cara Lekovitch, CScD, MOT, OTR/L, BCG, and Carin Wong, PhD, MS, for data support. The search strategy was adapted from a strategy previously developed by Barbara Folb, MM, MLS, MPH.

Declaration of Conflicting Interests

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: Research reported in this work was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (HIS-1608–35732). The statements in this work are solely the responsibility of its authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee.

ORCID iDs

Alexandra E Harper

Natalie E Leland

Supplemental Material

Supplemental material for this article is available online.

Alexandra E Harper, MOT, OTR/L, is an occupational therapist and PhD candidate in Rehabilitation Science in the Department of Occupational Therapy at the University of Pittsburgh. Her research focuses on understanding and improving post-acute care rehabilitation through stakeholder engagement and implementation science.

Lauren Terhorst, PhD, is a professor in the Department of Occupational Therapy at the University of Pittsburgh with secondary appointments in the Clinical and Translational Science Institute and in the School of Nursing. Terhorst is a methodologist and biostatistician with research interests in applying complex statistical methodologies to health sciences data.

Marybeth Moscirella, OTD, OTR/L, is an occupational therapist with an interest in improving care for people with Alzheimer’s disease and other dementias and their caregivers.

Rose L Turner is a health sciences research and instruction librarian for the Health Sciences Library System at the University of Pittsburgh.

Catherine V Piersol, PhD, OTR/L, FAOTA, is an occupational therapist, professor, and Chair of the Department of Occupational Therapy at Thomas Jefferson University. Her research targets optimizing performance and participation in people with Alzheimer’s disease and other dementias, frail elders, and their caregivers.

Natalie E Leland, PhD, OTR/L, BCG, FAOTA, FGSA, is an occupational therapist and associate professor in the Department of Occupational Therapy at the University of Pittsburgh. Her research aims to understand and improve care quality for older adults through stakeholder engagement and health services research methodologies.

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