Integration of a Palliative Approach in the Care of Older Adults with Dementia in Primary Care Settings: A Scoping Review

Abstract

A palliative approach to care aims to meet the needs of patients and caregivers throughout a chronic disease trajectory and can be delivered by non-palliative specialists. There is an important gap in understanding the perspectives and experiences of primary care providers on an integrated palliative approach in dementia care and the impact of existing programs and models to this end. To address these, we undertook a scoping review. We searched five databases; and used descriptive numerical summary and narrative synthesizing approaches for data analysis. We found that: (1) difficulty with prognostication and a lack of interdisciplinary and intersectoral collaboration are obstacles to using a palliative approach in primary care; and (2) a palliative approach results in statistically and clinically significant impacts on community-dwelling individuals, specifically those with later stages of dementia. There is a need for high-quality research studies examining the integrated palliative approach models and initiation of these models sooner in the care trajectory for persons living with mild and moderate stages of dementia in the community.

Résumé

L’approche palliative vise à répondre aux besoins des patients ayant certaines maladies chroniques et à ceux de leurs aidants tout au long de la trajectoire de soins. Elle peut être dispensée par des spécialistes non palliatifs. Une lacune importante subsiste dans la compréhension des perspectives et des expériences des prestataires de soins de première ligne pour ce qui est de l’approche palliative en soins intégrés pour les personnes atteintes de démence, ainsi que concernant l’impact des programmes et des modèles existants. Pour y remédier, nous avons réalisé une revue de la portée. Cinq bases de données ont été consultées et des approches descriptives numériques et de synthèse narrative ont été utilisées pour l’analyse des données. Nous avons constaté que : 1) les difficultés associées à la détermination du pronostic et le manque de collaboration interdisciplinaire et intersectorielle constituent des obstacles à l’utilisation d’une approche palliative dans les soins de première ligne ; 2) l’approche palliative a un impact statistiquement et cliniquement significatif sur les personnes avec démence vivant dans la communauté, particulièrement à un stade avancé. Des recherches de haute qualité sont requises sur les modèles de l’approche palliative intégrée et sur leur implantation à des stades moins avancés de la maladie, pour les personnes vivant dans la communauté et souffrant de démence précoce ou légère.

Background

Dementia is a terminal illness; however, the disease trajectory is highly unpredictable, making prognostication difficult (Smith & Ferguson, 2017). Dementia is typically complicated by the presence of multiple chronic diseases, increasing the risk for frequent hospitalizations and emergency department visits (Mondor et al., 2017). As cognitive abilities and decision-making capacity worsen, caregivers are expected to make care decisions on behalf of the persons living with dementia, which may exert increased caregiver burden (Gofton, Jog, & Schulz, 2009) and care that may be discordant with wishes of the care recipients. As a result, in the last year of their life, people with advanced dementia may receive burdensome medical interventions such as enteral nutrition, and suboptimal management of pain (Cintra, de Rezende, de Moraes, Cunha, & da Gama Torres, 2014).

A “palliative approach” has been suggested as a way to conceptualize care for people with non-cancer chronic illnesses – such as dementia – who may not require the formal palliative care services (Kristjanson, Toye, & Dawson, 2003) that are usually delivered by palliative specialists. A palliative approach utilizes the principles of palliative care, which involve the physical, social, emotional, and spiritual aspects of holistic care (Gamondi, Larkin, & Payne, 2013), to meet the needs of the person and their caregivers at all stages of chronic diseases, not just at the end of life (Canadian Hospice Palliative Care Association, 2013a, 2015), and which can be delivered by health care practitioners regardless of their training, role, and work setting (Touzel & Shadd, 2018). In this scoping review, the conceptualization of a palliative approach in the care of older adults with dementia was drawn from the work by Maciver and Ross (2018), the Canadian Hospice Palliative Care Association (2013b), Touzel and Shadd (2018), and van der Steen et al. (2014). The four consistent components within each of the above works include (1) advance care planning (ACP), (2) pain and symptom management, (3) psychosocial and spiritual support, and (4) the process of shared decision making. Advance care planning is defined as “a process that supports adults at any age or stage of health in understanding and sharing their values, life goals, and preferences regarding future medical care” (Sudore et al., 2017). Pain and symptom management are interventions instituted to maximize comfort to optimize the quality of life (Canadian Hospice Palliative Care Association, 2015), whereas psychosocial and spiritual care provide emotional support, boost hope, address stress, and increase the quality of life of patients and caregivers coping with chronic medical conditions (Canadian Hospice Palliative Care Association, 2015; Reyes-Ortiz, 2015). The process of shared decision making is proactive and iterative (Maciver & Ross, 2018) and involves evidence-informed decision making among practitioners, patients and care partners (Elwyn et al., 2010; van der Steen et al., 2014).

The majority of people with dementia live in the community (Alzheimer’s Association, 2018; Dudgeon, 2010; Wertman, Brodsky, King, Bentur, & Chekhmir, 2007), and these numbers are projected to increase exponentially (Dudgeon, 2010). The supply of geriatric practitioners is insufficient to meet the demands of the rising number of older adults (Canadian Nurses Association, 2016; Warshaw & Bragg, 2014). Furthermore, only about 15 per cent of persons with dementia receive any specialist palliative care services in the community in the last year of their life, and less than 1.9 per cent of these receive physician home visits (Seow, O’Leary, Perez, & Tanuseputro, 2018). As such, most people with dementia, including those approaching the end of life, are cared for by primary care providers in community settings (Shadd et al., 2013). Hence, primary care providers, both nurse practitioners (NP) and physicians, should be well situated to integrate a palliative approach when caring for older adults with dementia in their practice.

Authors in previous studies have examined how a palliative care approach was perceived and operationalized by nurses and physicians working in primary care settings, who cared for patients with life-limiting chronic illnesses (Reimer-Kirkham, Sawatzky, Roberts, Cochrane, & Stajduhar, 2016; Rewegan et al., 2019). The authors found that in caring for these patients, these clinicians were employing strategies that are aligned with the principles of palliative care, yet, clinicians tended to meld a palliative approach with specialist palliative services that are mostly limited to the end-of-life period as opposed to having an upstream focus. There remains an important gap in understanding the perspectives and experiences of primary care providers (nurses and physicians) on an integrated palliative approach in dementia care, as well as the impact of existing programs and models of care in primary care using an integrated palliative approach in dementia.

Past reviews have specifically examined outcomes of a integrated palliative approach in caring for individuals with dementia with most studies involving institutional care settings (Hines et al., 2011; Sampson, Ritchie, Lai, Raven, & Blanchard, 2005). No review, to our knowledge, has specifically focused on health care providers (nurses and physicians) in primary care/community settings and the integration of a palliative approach throughout the dementia trajectory. To address this gap, we aim to examine the literature guided by the following questions:

1. What are the nurses’ and physicians’ perspectives and experiences regarding the integration of a palliative approach in the care of older adults with dementia in primary care settings?

2. What are the impacts of the integration of a palliative approach in the care of older adults with dementia in primary care settings on patients, caregivers, and health care utilization outcomes?

A scoping review was selected because it aligned with the goal of exploring the topic’s breadth and depth in the available literature (Colquhoun et al., 2014). Furthermore, it allowed us to examine the broad scope of different community-based programs aimed at integrating a palliative approach into the care of older adults with dementia. It also explores a wide variety of perspectives and experiences of practitioners in primary care settings, including nurses and physicians, pertaining to an integrated palliative approach. This examination of empirical literature has important implications for enhancing the practice of primary care practitioners in the delivery of quality dementia care in primary care settings. This review also highlights gaps in current knowledge and the need for more research in this area.

Methods

We developed the review protocol according to the framework outlined by Arksey and O’Malley (2005), and advanced by Levac, Colquhoun, and O’Brien (2010), and followed the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) statement (Tricco et al., 2018) (Supplement A). MEDLINE^®, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, Embase, and Ageline databases were searched for studies between 1990 and February 2018, as significant seminal work was done in the early 1990s on palliative care (Mohanti, 2011). The search strategy was updated in October 2019. Based on the descriptive aims of the review, three key concepts made up the search strategy, "older adults", "dementia", and "palliative approach", which was developed in consultation with an information specialist at the University of Toronto libraries. The search strategy was translated according to each database platform’s command language, controlled vocabulary, and appropriate search fields. For example, the search terms for the broad concept of palliative approach included palliative care, palliat*.tw,kf., palliat* adj3 (care or approach or utiliz* or method*)).tw,kf. Supplement B presents an example of the MEDLINE search strategy.

Criteria

The inclusion criteria were

• • Original research studies using quantitative, qualitative, and mixed-methods research designs

• • Studies published in English and addressing the integration of palliative care principles and practices (Sawatzky et al., 2016) for people with dementia in primary care settings even though the term “palliative approach” may not have been explicitly used

• • Studies in which the mean age of the study population was ≥ 65 years

• • Studies that addressed the perspectives and experiences of nurses and physicians working in primary care settings on the integration of a palliative approach for older adults with dementia in their care; and/or that reported on the impact of an integrated palliative approach on older adults, caregivers, and/or health care utilization outcomes.

The exclusion criteria were

• • Editorials, reviews, expert opinions, and materials that did not include original data

• • Publications about medical assistance in dying (MAID), withdrawal of care, euthanasia, and assisted suicide

• • Studies involving settings other than primary care; for example, acute care and/or long-term care

• • Studies with the exclusive focus on end-of-life care

Data Analysis

We used the EndNote reference manager to collate 2,945 retrieved records. After systematic de-duplication, a final unique set of 2,153 records were imported into Covidence. This Web-based software program streamlines the screening, study selection, and data extraction for the literature reviews (www.covidence.org). Article screening, selection, data extraction, and quality assessment were completed independently by two reviewers (S.V. and C.D.) for each of the included studies, and consensus was reached through discussion. Cases of disagreement between reviewers were resolved by a third reviewer (K.M.). In the first stage of study selection, titles and abstracts of each article were screened, whereas in the second stage, full-text screening was completed for 70 articles that were deemed relevant. We also screened the reference lists of all the included studies. Where results of a study were reported in more than one publication, they were grouped.

The data were extracted by two authors (S.V. and C.D.) for each of the included studies and then compared and amalgamated, using a pre-piloted form on the details of the study type (quantitative, qualitative, report); physicians’ and nurses’ characteristics (specialty type, years of experience, additional educational preparation); patient and/or caregiver characteristics (age, gender, ethnicity, number of chronic conditions, dementia stage); features of a palliative approach; impact of integration of a palliative approach in dementia care; and categories/themes – if used; as well as nurses’ and physicians’ perspectives and experiences in integrating a palliative approach in the care of older adults with dementia in primary care settings, referring back to the research questions as a guide (Levac et al., 2010) (sample data abstraction form available from the corresponding author upon request). We used the Mixed Methods Appraisal Tool (MMAT) to critically appraise diverse designs in this review, with quality criteria specific to each design (Hong et al., 2018). It allowed us to summarize the quality of the evidence, as well as to guide the design of high-quality studies in future. However, no study was excluded based on the MMAT scores, to be consistent with the goals of the scoping reviews (Joanna Briggs Institute, 2015).

We followed Arksey and Malley’s as well as Levac et al.’s suggestion to analyze the extracted data in the context of each objective using a descriptive numerical summary to describe the characteristics of the study, participants, and interventions (Colquhoun et al., 2014; Daudt, van Mossel, & Scott, 2013; Levac et al., 2010). We used a narrative synthesizing approach guided by the definition of a palliative approach in the care of older adults with dementia operationalized for this review (Popay et al., 2006). This served as a common analytical framework for organizing and synthesizing standard information from each study to support mapping the data. As a result, it not only helped frame a nebulous concept that was useful in organizing the data synthesis but stands a higher likelihood of being useful in clinical practice.

Results

Characteristics of the Included Studies

Figure 1 describes our PRISMA flow diagram and the study selection process. Of 2,153 studies, 17 (21 articles) met inclusion criteria. Of the 17 studies, 8 addressed the perspectives of physicians and/or nurses, whereas, 9 studies reported on the impact of a palliative approach in the care of older adults with dementia in primary care settings (Carduff et al., 2016; Clevenger, Cellar, Kovaleva, Medders, & Hepburn, 2018; Daaleman et al., 2019; Holley, Gorawara-Bhat, Dale, Hemmerich, & Cox-Hayley, 2009; Hum et al., 2018; London, McSkimming, Drew, Quinn, & Carney, 2005; Nakanishi, Hirooka, Morimoto, & Nishida, 2017; Sternberg et al., 2019; Treloar, Crugel, & Adamis, 2009). Eight of nine studies involved persons with late stage of dementia, whereas one study did not report the dementia stage (Daaleman et al., 2019). No study addressed both the research questions. Supplement C describes the summary of the included studies. The selected articles included 7 (41%) qualitative, 8 (47%) quantitative, and 2 (11.7%) mixed-method studies. No randomized control trial was identified. Ten studies were conducted in Europe, four in the United States, and three in Asia (Singapore, Israel, and Japan).

Figure 1: PRISMA flow diagram

The sample size in eight studies (Beernaert et al., 2014; Brazil, Carter, Galway, Watson, & van der Steen, 2015; Carduff et al., 2016; Davies et al., 2014; De Witt Jansen et al., 2017; Evans et al., 2014; Ryan, Gardiner, Bellamy, Gott, & Ingleton, 2012; Vleminck et al., 2014) involving physicians and nurses, varied from 1 (Carduff et al., 2016) to 188 (Brazil et al., 2015) with a total sample size of 459 primary care physicians and 195 nurses. Of six studies in which response rate was applicable (Brazil et al., 2015; Evans et al., 2014; Holley et al., 2009; London et al., 2005; Nakanishi et al., 2017; Treloar et al., 2009), five reported it. It ranged from 25.6 per cent (Nakanishi et al., 2017) to 100 per cent (Treloar et al., 2009). Details on the characteristics of the health care practitioners are provided in Supplement D.

Table 1 summarizes the features of a palliative approach addressed in the included studies based on our operationalized definition. Ten of the 17 studies highlighted all four features; that is, ACP, pain and symptom management, psychosocial and spiritual support, and shared decision making (Brazil et al., 2015; Clevenger et al., 2018; Daaleman et al., 2019; Davies et al., 2014; Evans et al., 2014; Holley et al., 2009; Hum et al., 2018; London et al., 2005; Ryan et al., 2012; Treloar et al., 2009), whereas the remaining studies, except one (Carduff et al., 2016), addressed at least two. No study reported a feature that is not captured in our definition.

Table 1. Features of a palliative approach in dementia care addressed in the studies

Note. ^aDenotes study presented in more than one article.

Quality Assessment

The quality assessment result is presented in Supplement E based on the MMAT. The authors of MMAT discourage calculating the overall score of the included studies (Hong et al., 2018), however, the majority (n = 8) of the studies only met 40 per cent of the quality criteria. Quality assessment using MMAT enabled us to provide a comprehensive overview of the methodological quality of the available evidence (Pluye, 2014). Studies measuring the impact of a palliative approach had small sample sizes and sources of bias, leading to questions about the generalizability of the results. Nonetheless, it is crucial to conduct further research with rigorous methods to accumulate findings related to the effectiveness of this approach in dementia care.

Among the quantitative studies, in which response rates were indicated, only one was below 30 per cent (Nakanishi et al., 2017). The primary author of this study clarified that the low response rate of 25.6 per cent is comparable to other surveys in Japan. For most of the qualitative studies, issues concerning reflexivity and positionality were not discussed; hence, they may influence the interpretation of data. The qualitative studies were mainly descriptive without theoretical or paradigmatic foundations.

Question 1: Perspectives and Experiences of Nurses and Physicians

Table 2 presents a summary of nurses’ and physicians’ perspectives on integration of a palliative approach in the care of older adults with dementia in community settings. The next section presents the details on each of the four components of the definition of a palliative approach as operationalized for this review.

Table 2. Perspectives and experiences of nurses and physicians regarding integration of palliative approach

Note. ^aDenotes study presented in more than one article.

ACP = advance care planning; CNS = clinical nurse specialist; COPD = chronic obstructive pulmonary disease; ED = emergency department; EOL = end of life; FP = family physician; GP = general practitioner; HCP = health care practitioner; HF = heart failure; NI = Northern Ireland; PC = palliative care; PCP = primary care provider; WHO = World Health Organization; IP = interprofessional; SW = social worker.

ACP

Six of the eight studies highlighted ACP as part of a palliative approach (Beernaert et al., 2014; Brazil et al., 2015; Davies et al., 2014; Evans et al., 2014; Ryan et al., 2012; Vleminck et al., 2014). The findings were mixed regarding the appropriate timing of conducting ACP discussions. Many physicians agreed that early discussions promote the person’s role in the decision-making process and provide the opportunity to express their wishes while they can communicate them (Beernaert et al., 2014; Davies et al., 2014; Ryan et al., 2012; Vleminck et al., 2014). Conversely, some physicians had reservations about early ACP discussions, believing that the caregivers need to experience the decline in the advanced stages to help with treatment decisions (Brazil et al., 2015; Vleminck et al., 2014). Many participants raised the concern that ACP discussions may cause anxiety among patients and caregivers and take away hope (Beernaert et al., 2014; Brazil et al., 2015; Vleminck et al., 2014). Furthermore, physicians underlined that their lack of training leads to challenges with diagnosing a person in the early stages and projecting its trajectory, serving as a barrier to ACP discussions (Beernaert et al., 2014; Brazil et al., 2015; Vleminck et al., 2014).

Pain and symptom management

This was highlighted in all studies except one (Vleminck et al., 2014). Concerning challenges in managing pain and other symptoms, physicians expressed difficulty in identifying and assessing distressing symptoms in persons with advanced dementia (Davies et al., 2014; De Witt Jansen et al., 2017; Ryan et al., 2012). These challenges result from a person’s lack of communication abilities to describe troubling symptoms, which sometimes result in responsive behaviours. Physicians expressed difficulty identifying the etiology of behavioural symptoms and concern that they do not want to medicate patients for the wrong reasons (Davies et al., 2014; De Witt Jansen et al., 2017; Ryan et al., 2012; Toivonen et al., 2017). Practitioners, therefore, emphasized the role of caregivers for the assessment of distressing symptoms as well as response to treatments (De Witt Jansen et al., 2017; Ryan et al., 2012).

Participants indicated a lack of resources and personnel to optimize symptom management in the community (Brazil et al., 2015). They highlighted that caring for persons with dementia requires collaboration and open channels of communication among various specialists including palliative, psychogeriatric, and hospice care, as well as sectors for consultation and seamless care transitions (Beernaert et al., 2014; Davies et al., 2014; De Witt Jansen et al., 2017; Ryan et al., 2012).

Psychosocial and spiritual care

Seven of the eight studies related to practitioners’ perspectives identified psychosocial support as an essential feature of a palliative approach in dementia care, whereas only two studies explicitly mentioned the importance of spiritual care (Brazil et al., 2015; Toivonen et al., 2017).

Participants in one study reported that persons with dementia should be treated with basic nursing skills that include psychosocial and emotional support (Ryan et al., 2012). Whereas participants in several other studies indicated that it is the role of the physicians to address the needs requiring psychosocial support (Beernaert et al., 2014; Brazil et al., 2015; Ryan et al., 2012). Physicians also pointed to a lack of funding for interdisciplinary teams to complement their care in supporting persons with dementia and caregivers at home (Brazil et al., 2015; Davies et al., 2014; Ryan et al., 2012). Physicians expressed frustration about the difficulty of acquiring community support for informal caregivers such as respite care to relieve their stress, resulting in unnecessary hospital transfers (Brazil et al., 2015; Carduff et al., 2016). One study also highlighted the need for the integration of health and social care services for the optimal delivery of a palliative approach (Davies et al., 2014).

The process of shared decision making

The shared decision-making process was highlighted in six of eight studies addressing the perspectives and experiences of physicians and nurses (Brazil et al., 2015; Davies et al., 2014; De Witt Jansen et al., 2017; Evans et al., 2014; Ryan et al., 2012; Vleminck et al., 2014). Participants recognized that shared decision making involving patients and their caregivers as partners should be a goal of clinical practice (Brazil et al., 2015; Ryan et al., 2012). They perceived that persons with dementia should be engaged in the conversation about their future care because of the impending loss of decisional capacity, hence acknowledging the patients’ role in decision making (Brazil et al., 2015; Ryan et al., 2012; Vleminck et al., 2014). Shared decision making also involved engaging caregivers in the late stages for the purpose of identifying treatment options according to the best interests of the person living with dementia (Davies et al., 2014; De Witt Jansen et al., 2017; Evans et al., 2014; Ryan et al., 2012).

Question 2: Impact of a Palliative Approach in Dementia Care

Of the 17 studies, 9 reported on the impact of a palliative approach in the care of older adults with dementia in primary care settings and examined a variety of interventions and outcome measures (Carduff et al., 2016; Clevenger et al., 2018; Daaleman et al., 2019; Holley et al., 2009; Hum et al., 2018; London et al., 2005; Nakanishi et al., 2017; Sternberg et al., 2019; Treloar et al., 2009) (See Table 3. for details on these outcomes). Eight of nine studies involved patients in the advanced stage of the disease, whereas one did not report the dementia stage (Daaleman et al., 2019). The outcomes describing the impact of a palliative approach were focused on the impacts on patient-related outcomes, most of which were reported by caregivers and/or assessed by health care practitioners, as described in the following paragraphs (Clevenger et al., 2018; Holley et al., 2009; London et al., 2005; Nakanishi et al., 2017; Sternberg et al., 2019; Treloar et al., 2009); caregiver-related outcomes (Carduff et al., 2016; Clevenger et al., 2018; Holley et al., 2009; Sternberg et al., 2019; Treloar et al., 2009); and health care utilization (Clevenger et al., 2018; Daaleman et al., 2019; Holley et al., 2009; Hum et al., 2018; London et al., 2005; Sternberg et al., 2019; Treloar et al., 2009). Table 3 presents significant findings from the studies related to the impact of this approach.

Table 3. Studies addressing the impact of palliative approach in dementia care

Note. ✓ = Yes; X = not mentioned/reported

ACP = advance care planning; ADL = activities of daily living; BPSD = Behavioral and Psychological Symptoms of Dementia; CAD-EOLD = Comfort Assessment in Dying With Dementia; CALL Project = Comprehensive, Adaptable, Life- Affirming, Longitudinal (CALL) palliative care project; CG = caregiver; CI = confidence interval; ED = emergency department; EOL: end of life; FAST = Functional Assessment Staging; HCSMCM13: Home Care Satisfaction Measure-Care Management Service; LTC = long-term care; MNA: Mini Nutritional Assessment; MOCA = Montreal Cognitive Assessment; NPI-Q: Neuropsychiatric Inventory Questionnaire, severity domain; caregiver distress domain; PAINAD: Pain Assessment in Advanced Dementia; PATCH = Palliative Access Through Care at Home; PSM = pain and symptom management; PSS = psychosocial and spiritual support; QLDJ = Japanese QOL instrument for older adults experiencing dementia; QUALID = Quality of Life in Late-Stage Dementia; SDM = Shared Decision Making; ZBI = Zarit Burden Interview to assess impact of caregiving.

Impact of a palliative approach on patient-related outcomes

Several researchers focused on patient-related outcomes such as a decrease in suffering, increased ability to stay home (Clevenger et al., 2018; Holley et al., 2009; Hum et al., 2018; London et al., 2005; Treloar et al., 2009), and improvement in the quality of life (Hum et al., 2018; Nakanishi et al., 2017). Overall, investigators reported that optimization of pain and symptom management including the use of oral feeding as opposed to enteral nutrition (Treloar et al., 2009) at home in the advanced stages led to a reduction in overall suffering (Clevenger et al., 2018; Holley et al., 2009; London et al., 2005; Sternberg et al., 2019; Treloar et al., 2009). Only one study reported on medication de-prescribing (Sternberg et al., 2019).

Clevenger et al. (2018) examined the Integrated Memory Care Clinic (IMCC) led by advanced practice nurses that delivered interdisciplinary comprehensive primary and behavioural care management around the clock at home. The program led to the identification and management of chronic diseases, identification of advanced directives (38%), and non-significant improvement in neuropsychiatric symptoms severity (p = 0.07) as well as caregiver distress (p = 0.69) related to behavioural symptoms. Sternberg and colleagues examined a home hospice program offered to older adults with advanced dementia, which also included after-hour service (Sternberg et al., 2019). The program led to statistically significant improvement in participants’ symptom management scores (p ≤ 0.001) at the end of the program when compared with the baseline scores; also, the program led to an average medication de-prescribing of 2.1 (standard deviation [SD] 1.4) unnecessary medications per person.

One study used a patient self-reported tool called the Modified City of Hope questionnaire to assess the improvement in physical symptoms (p ≤ 0.05) over time with interventions provided through a palliative care program at home (London et al., 2005). Participants included patients in the advanced stages of various diseases, including dementia. However, authors do not provide details on how data were acquired from these individuals, given that loss of communication abilities is inevitable in advanced dementia (Fazel, Hope, & Jacoby, 2000). Hence, there is a concern related to the threat to internal validity in terms of how the patients completed the questionnaire, and it is challenging to contextualize the findings. In their qualitative analysis, Holley et al. found that a decrease in suffering and an increase in comfort resulted from the optimal management of issues at home, such as sleep problems, dry mouth, constipation or diarrhea, breathing concerns, and pains, as well as decrease in psychological and physical distress associated with attending outpatient clinic appointments, because care was provided at home (Holley et al., 2009). Nakanishi and colleagues measured quality of life as an interaction with surroundings, self-expression, and exhibition of minimum negative behaviour in patients with dementia (Nakanishi et al., 2017). The participants were professional caregivers to community-dwelling older adults with advanced dementia; for example, nurses and nursing assistants, who completed these measures. Researchers found that patients’ quality of life was significantly higher (p ≤ 0.05) when professional caregivers exhibited greater knowledge of dementia or possessed positive attitudes regarding palliative care in dementia. Conversely, the investigators also found that the use of physical restraints was higher in patients with severe impairment in the activities of daily living regardless of the professional caregivers’ knowledge and attitudes regarding palliative care for advanced dementia (Odds ratio 2.98 95% confidence interval [CI] 2.37–3.74).

Impact of a palliative approach on caregiver outcomes

Five studies reported on caregiver outcomes (Carduff et al., 2016; Clevenger et al., 2018; Holley et al., 2009; Sternberg et al., 2019; Treloar et al., 2009). Main outcomes measured included: identification of carers needing support (n = 1), caregivers’ participation in psychoeducation (n = 1), caregiver stress (n = 2), caregiver competence (n = 1), caregivers’ satisfaction with care at home (n = 3), and quality time spent at home (n = 1). The investigators in one United Kingdom-based study developed a model to identify, assess, and support carers in primary care practice (Carduff et al., 2016). They found that carers valued the connection with their primary care practice. However, because of time-consuming paperwork to acquire support, only 36 per cent of the eligible carers participated in this program, whereas Clevenger and colleagues (2018) provided caregivers opportunities to engage in psychoeducation and support groups, where 38.1 per cent of caregivers participated. Although statistically non-significant, there was a reduction in caregiver stress (p = 0.69) and an improvement in caregiver competence (p = 0.18) in managing responsive behaviours in consultation with the IMCC team (Clevenger et al., 2018).

Caregivers reported a sense of relief and support because of the 24-hour access to practitioners with training in geriatrics, palliative care, and end-of-life care for symptom management (Holley et al., 2009; Sternberg et al., 2019), and also reported an increase in their knowledge of the dementia trajectory (Sternberg et al., 2019). In another study, caregivers found that access to professionals, including a social worker and spiritual care provider, had a positive impact on their well-being and lessened their caregiving burden (Sternberg et al., 2019; Treloar et al., 2009).

Impact of a palliative approach on health care utilization

Seven studies reported an impact on health care utilization, where specific outcomes included: death at home versus in hospital and/or long-term care homes (Holley et al., 2009; London et al., 2005; Sternberg et al., 2019; Treloar et al., 2009), decrease in emergency department visits and hospitalization (Clevenger et al., 2018; Daaleman et al., 2019; London et al., 2005; Sternberg et al., 2019), reduction in health care costs (Treloar et al., 2009), smooth care transitions including to hospice (Clevenger et al., 2018; Daaleman et al., 2019; Holley et al., 2009; Hum et al., 2018), and care coordination for the receipt of appropriate services such as day programs (Clevenger et al., 2018).

Two studies reported that the majority of patients died at home as a result of optimal symptom management (Clevenger et al., 2018; Holley et al., 2009; Treloar et al., 2009). Two studies reported on the cost of the program; one reported considerable savings when the cost of care was compared between home and a nursing care facility for the 14 participants in the program (Treloar et al., 2009), whereas one reported that preliminary cost analysis revealed the program to be cost neutral (Sternberg et al., 2019). Authors reported a decrease in hospitalization rate and improved care transitions because of optimal symptoms management at home (Hum et al., 2018; London et al., 2005; Sternberg et al., 2019) including after hours (Hum et al., 2018; Sternberg et al., 2019). For example, in one study, the rate of hospitalization decreased to 29 per cent, and critical care admission decreased to 7 per cent among the participants when compared with the much higher national averages of 71 and 36 per cent, respectively (London et al., 2005), whereas in another study, hospital admissions declined to 0.8 per cent from 6.7 per cent (Clevenger et al., 2018). In comparison, in one study, 6 of the 14 participants died in the hospital following a short hospitalization (Treloar et al., 2009). The authors speculated that the symptoms could have been alleviated had the service been available after hours. Interestingly, Sternberg et al. reported a 6-month mortality of 20 per cent in the participants in their pilot hospice program, declaring that this was less than predicted in the literature, suggesting that existing survival prognosis tools for persons living with advanced dementia have inconsistent predictive validity of 6-month mortality (Sternberg et al., 2019).

Discussion

The review included 17 studies, the majority of which were published recently, pointing to the relevance and the growing awareness of an integrated palliative approach in caring for persons living with dementia in primary care settings. No studies were found that looked at the integration of a palliative approach in persons with mild to moderate dementia. As such, the findings in this article relate to the integration of a palliative approach in advanced dementia, which appears to be most common. Primary care providers are reluctant to initiate ACP discussions because of the barriers related to the unpredictable and protracted trajectory of dementia, leading to difficulty in prognostication and concerns about stripping hope and causing psychological distress, as well as lack of training and experience in caring for the persons with dementia (Beernaert et al., 2014; Brazil et al., 2015; Vleminck et al., 2014). Primary care physicians worry about the ability to offer appropriate symptom management and psychosocial support to patients and caregivers (Brazil et al., 2015; Davies et al., 2014; Ryan et al., 2012). This is because of a lack of interdisciplinary approach, collaboration among specialties and sectors (Beernaert et al., 2014; Davies et al., 2014; De Witt Jansen et al., 2017; Ryan et al., 2012), and integration of health and social services (Davies et al., 2014).

In this review, we have operationalized a definition of a palliative approach in the context of dementia and used this definition to scope the existing literature in this area. There is variability in the literature regarding what constitutes an integrated palliative approach to care for older adults with dementia at various stages within their trajectory from the perspective of non-palliative specialists. Therefore, setting out the four main components of a palliative approach; that is, ACP, pain and symptoms management, psychosocial and spiritual support, and the process of shared decision making, was a necessary first step. Given the lack of clarity as to the core components of a palliative approach in the care of older adults with dementia in primary care settings, future investigation is required to test this definition.

The uncertainty related to the appropriate timing of the integration of a palliative approach in dementia care was a prominent theme identified in this review. It is recommended that a palliative approach should be integrated early with chronic disease management to enhance the quality of life of patients and their caregivers throughout the disease trajectory and not just at the end of life (Canadian Hospice Palliative Care Association, 2015; Durepos et al., 2017; Hines et al., 2011). However, there remain substantial gaps in integrating a palliative approach with chronic disease management, resulting in aggressive treatment and investigations at the end of life leading to compromised care experiences (Durepos et al., 2017). Persons with mild to moderate dementia can evaluate, interpret, and derive meaning in their lives (Cheong et al., 2015; Hegde & Ellajosyula, 2016), making early stages a highly appropriate time for engaging patients and their care partners in discussions about dementia trajectory, care approaches, goals, and wishes for ongoing and future care. Nevertheless, how early after the diagnosis should these discussions commence remains a question that requires further exploration.

Advance care planning can promote patients’ autonomy and prepare their caregivers for future care decisions. We found that primary care practitioners are concerned about causing anxiety and destroying a person’s hope with the integration of a palliative approach in dementia care, specifically when discussing ACP. However, in other populations, early integration of palliative care that included ACP improved quality of life and reduced depression symptoms in participants (Hoerger et al., 2018; Temel et al., 2010). Participants in these studies received less aggressive care at the end of life than those in the standard care group (Temel et al., 2010). Such prospective studies are also needed for persons with early stages of dementia, to examine the short-term and long-term impact on clinically significant outcomes.

A significant finding of our review was related to a lack of access to community agencies to enhance psychosocial support for patients and caregivers. Community-dwelling older adults with dementia live with informal caregivers and receive more care from them than from paid caregivers (Alzheimer’s Association, 2014). Although anticipatory grief was not specifically examined in any of the included studies, it is frequently experienced by informal caregivers of persons with dementia throughout the course of the disease, and it is associated with an increased level of caregiving burden and depression (Garand et al., 2012). As previously identified, one of the main components of an integrated palliative approach is psychosocial and spiritual support for the patients and caregivers. Therefore, lack of identification and supports for their unmet needs could lead to burnout and portend unnecessary hospitalizations. Hence, it is crucial that primary care practitioners have access to interprofessional teams, including social workers and spiritual care providers throughout the dementia trajectory, to establish a comprehensive and coordinated plan of care. It is also imperative to recognize that an integrated care approach requires aligning the health and social care systems, as health and social care needs are inextricably connected (McGilton et al., 2018). Hence, an unmet psychosocial need may potentially minimize the effect of a well-planned health intervention.

The process of shared decision making was identified as an essential feature to actualize an integrated palliative approach in dementia care. Shared decision making requires building rapport with patients and caregivers, as well as respecting a person’s capacity and dependence on others (Elwyn et al., 2012). Decision-making capacity worsens as dementia progresses, making it more critical to engage the caregivers at the outset of dementia, as their role is instrumental and dynamic in optimizing care for persons with dementia through its progression. By means of the opportunities to engage in the process of shared decision making, caregivers can learn about the care wishes and values of the older adults they care for, which can potentialiy result in increased decision-making confidence when the person with dementia loses their ability to make personal care decisions, as well as during the periods of crisis.

We identified nine studies that examined the integration of a palliative approach in the care of older adults with dementia in primary care settings. The outcomes were related to impact on the patients, such as a decrease in suffering as a result of pain and symptom management at home (Clevenger et al., 2018; Holley et al., 2009; Hum et al., 2018; London et al., 2005; Sternberg et al., 2019; Treloar et al., 2009), on the caregivers, such as satisfaction with care (Holley et al., 2009; Sternberg et al., 2019; Treloar et al., 2009), and on health care utilization, such as a decrease in inpatient hospitalization (Clevenger et al., 2018; Daaleman et al., 2019; London et al., 2005; Sternberg et al., 2019). The synthesis of outcomes for a palliative approach in dementia care presented methodological challenges. This was noted in another systematic review that evaluated randomized controlled trials examining the efficacy of a palliative approach in advanced dementia (Sampson et al., 2005). The investigators in this review found that in advanced dementia, validated measures, including pain scales and caregiver reports of symptom control and satisfaction, may be inaccurate. Furthermore, patients with late stages of dementia have verbal difficulty, and scales measuring satisfaction with care usually have positive responses, resulting in skewed distribution (Volicer, Hurley, & Blasi, 2001). Our findings also raise questions about the use and efficacy of tools to measure outcomes in studies of impact, as eight of nine studies addressing the impacts of this approach recruited patients in the advanced stage. There remains a need to identify and validate appropriate measures sensitive to palliative approach interventions throughout the trajectory of the illness; for example, using behaviour-based tools when verbal communication is no longer accessible. Sternberg at al. reported a lack of survival tools with consistent predictive validity of 6-month mortality for advanced dementia; as a result, over 60 per cent of participants in the study were transferred back to regular home care service at the culmination of the pilot home-based hospice project (Sternberg et al., 2019). This is likely related to the unpredictable and protracted trajectory of dementia, complicated by the presence of multi-morbidities and a high level of frailty. Hence, placing a person with dementia in a numerical range of prognosis for the receipt of optimal care in the community does not seem to provide patient-centred care. Therefore, it is vital to acknowledge the terminal and progressive nature of dementia at the outset to customize care per unique individual needs and circumstances, regardless of the dementia stage.

It is important that primary care clinicians mindfully incorporate each of the four components of palliative approach laid out in this review in caring for persons living with dementia in community throughout the course of the disease. This would also acknowledge the definition of palliative care by the World Health Organization (WHO), which asserts that it is applicable early with the management of life-limiting conditions and aims to improve the quality of life of patients and caregivers by addressing their physical, psychosocial, and spiritual care needs (World Health Organization, 2020). The specific interventions for each of the four components of a palliative approach will differ with the progression of dementia, level of frailty, and individual needs of patients and caregivers. Also, the integrated palliative approach goes beyond the person’s death to providing for the bereavement care needs of the caregivers (Schulz et al., 2003). As our findings suggest, clinicians will need to advance their knowledge and expertise on the complexity of dementia care, including communication skills to broach difficult topics with patients and caregivers such as the terminal and progressive nature of dementia, inevitable loss of communication abilities, and need for early ACP discussions.

Recommendations for Future Research and Clinical Practice

Future research should focus on longitudinal studies to establish the benefits of a palliative approach integrated over the trajectory of dementia, including for those persons in the early stage. Specific interventions with appropriate outcome measures need to be identified and validated. Also, there is a need to determine the timing at which a palliative approach should be integrated with dementia management that is tailored to individual preferences and values. Typically, older adults with dementia, especially those who are recipients of home and community care services (Mondor et al., 2017), also have multiple chronic conditions. As it is, persons with dementia have an increased likelihood of hospitalizations with 3.68 times higher odds than those without dementia (Bynum et al., 2004). With each additional chronic disease, there is an even higher risk of frequent hospitalizations and visits to emergency departments (Mondor et al., 2017). These exposures to the health care system can serve as opportune times for hospital and community-based clinicians to broach the subject of ACP, assess the need for psychosocial and spiritual support for patients and caregivers, and optimize pain and symptom management through the process of shared decision making.

Our findings suggest that health care providers in primary care practice must be trained and available to manage patients at home for an effective, integrated palliative approach in caring for their patients at all stages of dementia. Physicians in primary practice already have a lack of primary care resources and heavy workloads. Therefore, there is a need to innovate community-based interdisciplinary models of care delivery that address care and symptom management at home. These models should have the capacity to amalgamate health care provided by various sectors while coordinating services provided by health and social services; and optimizing support for patients as well as for informal caregivers (Cohn et al., 2017). Furthermore, primary care clinicians should be able know the components of the integrated palliative approach with dementia care to be able to measure its delivery and effectiveness in their setting in order to highlight their role in the delivery of palliative care at the system level and be recognized by the system planners (Shadd et al., 2013). Hence, future research should be designed by looking at indicators of an integrated palliative approach in caring for community- dwelling individuals with dementia in primary care.

In light of the growing number of older adults, the health care systems are presented with challenges whereby there is a shortage of practitioners who are well versed in caring for older adults. A large number of those who are providing care to this group of patients are critically underprepared to serve the needs of their older patients (Institute of Medicine Committee, 2008). Hence, there is tremendous potential to design and evaluate interdisciplinary models of care that may involve advanced practice nurses such as NPs. Studies examining the outcomes related to the care provided by NPs to residents of long-term care homes have revealed greater family satisfaction with end-of-life care (Liu, Guarino, & Lopez, 2012) and reduction in the cost of care (Bauer, 2010).

Given the fact that the majority of community-dwelling older adults with dementia receive assistance with the activities of daily living from unpaid caregivers (Kasper, Freedman, Spillman, & Wolff, 2015), future work should also involve an exploration of the perspective and experiences of caregivers related to this approach. Longitudinal studies need to be designed to explore the sources of anticipatory grief at different stages of dementia and specific interventions to address them. Finally, one of the barriers to the integration of a palliative approach in the care of older adults with dementia was primary care practitioners’ lack of education and experience in caring for this group of individuals. This is a concern and calls for the design and implementation of educational and capacity-building strategies included as part of the basic professional education, which should also be mandated as part of continuing education activities.

Strengths and Limitations

There is not a single agreed-upon conceptual framework of a palliative approach for persons with dementia through the illness trajectory, including the early stages, the strength of our study is that we consolidated and synthesized a model that focused on four consistent components. The scoping review results showed that the model we proposed was relevant, as most of the studies we found had at least three of the four features embedded in them; that is., ACP, pain and symptom management, psychosocial and spiritual support; and the process of shared decision making. Developing the definition of an integrated palliative approach from the existing literature was an important step to guide our search strategy, data extraction, and synthesis, because of a lack of clarity as to what constitutes this approach for persons living with dementia throughout the trajectory, and not just at the late stage. Our study had several limitations. We excluded studies involving other settings such as acute care or long-term care because of our inclusion criteria that the study needed to address palliative care principles for persons with dementia in primary care settings. Hence, of 2,153 abstracts, we only identified 17 that met the inclusion criteria. Although the review sheds light on the state of evidence on the topic of inquiry, it only includes studies published in English, potentially missing out on literature that may be available in other languages. Also, to capture all the relevant studies from the selected databases, we did not exclude studies based on the quality. This allowed us to present results that include lower quality studies, to be able to summarize the breadth of the available literature.

Conclusion

To our knowledge, this review is the first to operationalize the definition of a palliative approach in the care of older adults with dementia throughout the disease trajectory in primary care, which was necessary based on existing work which had focused on persons in the late stages of dementia or was developed for palliative experts. The findings of the review indicate that there is a lack of studies dealing with older adults with dementia in primary care settings, particularly in the early stages. Future research is needed to confirm whether the integration of a palliative approach early on in the dementia trajectory offers the opportunity to understand and honour a person’s wishes for present and future health care, prepare caregivers for making future care decisions, and increase the likelihood of receiving goal-concordant end-of-life care.