Psychosocial distress among spouses of persons with dementia before and after their partner's death.

BACKGROUND: Spouses of persons living with dementia may face heightened psychosocial distress in the years immediately before and after their partner's death. We compared the psychosocial needs of spouses of partners with dementia with spouses of partners with non-impaired cognition nearing and after the end of life, focusing on loneliness, depression, life satisfaction, and social isolation. METHODS: We used nationally representative Health and Retirement Study married couples data (2006-2018), restricting to spouses 50+ years old. We included 2098 spouses with data on loneliness and depressive symptoms 2 years before and after the partner's death. We additionally examined a subset of spouses (N = 1113) with available data on life satisfaction and social isolation 2 years before their partner's death. Cognitive status of partners was classified as non-impaired cognition, cognitive impairment not dementia (cognitive impairment), and dementia. We used multivariable logistic regression to determine: 1) the change in loneliness and depression for spouses pre- and post-partner's death, and 2) life satisfaction and social isolation 2 years before the partner's death. RESULTS: Spouses were on average 73 years old (SD: 10), 66% women, 7% Black, 7% Hispanic non-White, 24% married to persons with cognitive impairment, and 19% married to partners with dementia. Before their partner's death, spouses married to partners with dementia experienced more loneliness (non-impaired cognition: 8%, cognitive impairment: 16%, dementia: 21%, p-value = 0.002) and depressive symptoms (non-impaired cognition: 20%, cognitive impairment: 27%, dementia: 31%, p-value < 0.001), and after death a similar prevalence of loneliness and depression across cognitive status. Before their partner's death, spouses of partners with dementia reported less life satisfaction (non-impaired cognition: 74%, cognitive impairment: 68%; dementia: 64%, p-value = 0.02) but were not more socially isolated. CONCLUSION: Results emphasize a need for clinical and policy approaches to expand support for the psychosocial needs of spouses of partners with dementia in the years before their partner's death rather than only bereavement.

Palliative Care in Early Dementia: A Scoping Review.

BACKGROUND: Palliative care is recommended for all people with dementia from diagnosis through end-of-life. However, palliative care needs and effective elements of palliative care are not well-defined for the earlier stages of dementia. OBJECTIVE: To systematically map current research on palliative care early in the disease trajectory of dementia. DESIGN: Scoping review of scientific literature. DATA SOURCES: PubMed, CINAHL, EMBASE, Cochrane, PsycINFO, Web of Science REVIEW METHODS: We included studies published in English over the last decade (through March 2022) that focused on palliative care in early stages of dementia and targeted outcomes in palliative care domains. Two authors independently screened abstracts and full texts and scored the quality of included studies using tools by the Joanna Briggs Institute. RESULTS: Among the 77 papers reviewed, few addressed early stages of dementia specifically. We found that: 1) While "early" palliative care was not well-defined in the literature, evidence indicated that palliative care needs were present at or before diagnosis and across the trajectory. Notable opportunities for palliative care arise at 'tipping points' (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for goal-aligned care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3) Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers. The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care. CONCLUSION: The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning.

Health Care Costs Associated With Hospice Use For People With Dementia In The US.

Policy makers in the US are increasingly concerned that greater use of the Medicare hospice benefit by people with dementia is driving up costs. Yet this perspective fails to incorporate potential cost savings associated with hospice. We estimated the association between hospice use by people with dementia and health care costs, using Medicare Current Beneficiary Survey data from the period 2002-19. For community-dwelling people with dementia, Medicare costs were lower for those who used hospice than for those who did not, whether hospice enrollment was in the last three days ($2,200) or last three months ($7,200) of life, primarily through lower inpatient care costs in the last days of life. In nursing homes, total and Medicare costs were lower for hospice users with dementia who enrolled within a month of death than for those who did not use hospice. Total costs for the entire last year of life for those who used any days of hospice in the last year compared with no hospice did not differ, although Medicare costs were higher and Medicaid costs lower for those in nursing homes. Medicare policies that reduce hospice access and incentivize hospice disenrollment may actually increase Medicare costs, given that hospice cost savings generally derive from a person's last days or weeks of life.

Care Ecosystem Collaborative Model and Health Care Costs in Medicare Beneficiaries With Dementia: A Secondary Analysis of a Randomized Clinical Trial.

Importance: Collaborative dementia care programs are effective in addressing the needs of patients with dementia and their caregivers. However, attempts to consider effects on health care spending have been limited, leaving a critical gap in the conversation around value-based dementia care. Objective: To determine the effect of participation in collaborative dementia care on total Medicare reimbursement costs compared with usual care. Design, Setting, and Participants: This was a prespecified secondary analysis of the Care Ecosystem trial, a 12-month, single-blind, parallel-group randomized clinical trial conducted from March 2015 to March 2018 at 2 academic medical centers in California and Nebraska. Participants were patients with dementia who were living in the community, aged 45 years or older, and had a primary caregiver and Medicare fee-for-service coverage for the duration of the trial. Intervention: Telehealth dementia care program that entailed assignment to an unlicensed dementia care guide who provided caregiver support, standardized education, and connection to licensed dementia care specialists. Main Outcomes and Measures: Primary outcome was the sum of all Medicare claim payments during study enrollment, excluding Part D (drugs). Results: Of the 780 patients in the Care Ecosystem trial, 460 (59.0%) were eligible for and included in this analysis. Patients had a median (IQR) age of 78 (72-84) years, and 256 (55.7%) identified as female. Participation in collaborative dementia care reduced the total cost of care by $3290 from 1 to 6 months postenrollment (95% CI, -$6149 to -$431; P = .02) and by $3027 from 7 to 12 months postenrollment (95% CI, -$5899 to -$154; P = .04), corresponding overall to a mean monthly cost reduction of $526 across 12 months. An evaluation of baseline predictors of greater cost reduction identified trends for recent emergency department visit (-$5944; 95% CI, -$10 336 to -$1553; interaction P = .07) and caregiver depression (-$6556; 95% CI, -$11 059 to -$2052; interaction P = .05). Conclusions and Relevance: In this secondary analysis of a randomized clinical trial among Medicare beneficiaries with dementia, the Care Ecosystem model was associated with lower total cost of care compared with usual care. Collaborative dementia care programs are a cost-effective, high-value model for dementia care. Trial Registration: ClinicalTrials.gov Identifier: NCT02213458.

Hospice Quality, Race, and Disenrollment in Hospice Enrollees With Dementia.

Background: Racial and ethnic minoritized people with dementia (PWD) are at high risk of disenrollment from hospice, yet little is known about the relationship between hospice quality and racial disparities in disenrollment among PWD. Objective: To assess the association between race and disenrollment between and within hospice quality categories in PWD. Design/Setting/Subjects: Retrospective cohort study of 100% Medicare beneficiaries 65+ enrolled in hospice with a principal diagnosis of dementia, July 2012-December 2017. Race and ethnicity (White/Black/Hispanic/Asian and Pacific Islander [AAPI]) was assessed with the Research Triangle Institute (RTI) algorithm. Hospice quality was assessed with the publicly-available Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey item on overall hospice rating, including a category for hospices exempt from public reporting (unrated). Results: The sample included 673,102 PWD (mean age 86, 66% female, 85% White, 7.3% Black, 6.3% Hispanic, 1.6% AAPI) enrolled in 4371 hospices nationwide. Likelihood of disenrollment was higher in hospices in the lowest quartile of quality ratings (vs. highest quartile) for both White (adjusted odds ratio [AOR] 1.12 [95% confidence interval 1.06-1.19]) and minoritized PWD (AOR range 1.2-1.3) and was substantially higher in unrated hospices (AOR range 1.8-2.0). Within both low- and high-quality hospices, minoritized PWD were more likely to be disenrolled compared with White PWD (AOR range 1.18-1.45). Conclusions: Hospice quality predicts disenrollment, but does not fully explain disparities in disenrollment for minoritized PWD. Efforts to improve racial equity in hospice should focus both on increasing equity in access to high-quality hospices and improving care for racial minoritized PWD in all hospices.

The Epidemiology of Smoking in Older Adults: A National Cohort Study.

BACKGROUND: Older smokers account for the greatest tobacco-related morbidity and mortality in the USA, while quitting smoking remains the single most effective preventive health intervention for reducing the risk of smoking-related illness. Yet, knowledge about patterns of smoking and smoking cessation in older adults is lacking. OBJECTIVE: Assess trends in prevalence of cigarette smoking between 1998 and 2018 and identify patterns and predictors of smoking cessation in US older adults. DESIGN: Retrospective cohort study PARTICIPANTS: Individuals aged 55+ enrolled in the nationally representative Health and Retirement Study, 1998-2018 MAIN MEASURES: Current smoking was assessed with the question: "Do you smoke cigarettes now?" Quitting smoking was defined as having at least two consecutive waves (between 2 and 4 years) in which participants who were current smokers in 1998 reported they were not currently smoking in subsequent waves. KEY RESULTS: Age-adjusted smoking prevalence decreased from 15.9% in 1998 (95% confidence interval (CI) 15.2, 16.7) to 11.2% in 2018 (95% CI 10.4, 12.1). Among 2187 current smokers in 1998 (mean age 64, 56% female), 56% of those living to age 90 had a sustained period of smoking cessation. Smoking less than 10 cigarettes/day was strongly associated with an increased likelihood of quitting smoking (subdistribution hazard ratio 2.3; 95% CI 1.9, 2.8), compared to those who smoked more than 20 cigarettes/day. CONCLUSIONS: Smoking prevalence among older persons has declined and substantial numbers of older smokers succeed in quitting smoking for a sustained period. These findings highlight the need for continued aggressive efforts at tobacco cessation among older persons.

Functional and clinical needs of older hospice enrollees with coexisting dementia.

BACKGROUND: The Medicare Hospice Benefit increasingly serves people dying with dementia. We sought to understand characteristics, hospice use patterns, and last-month-of-life care quality ratings among hospice enrollees with dementia coexisting with another terminal illness as compared to enrollees with a principal hospice diagnosis of dementia, and enrollees with no dementia. METHODS: We conducted a pooled cross-sectional study among decedent Medicare beneficiaries age 70+ using longitudinal data from the National Health and Aging Trends Study (NHATS) (last interview before death; after-death proxy interview) linked to Medicare hospice claims (2011-2017). We used unadjusted and adjusted regression analyses to compare characteristics of hospice enrollees with coexisting dementia to two groups: (1) enrollees with a principal dementia diagnosis, and (2) enrollees with no dementia. RESULTS: Among 1105 decedent hospice enrollees age 70+, 40% had coexisting dementia, 16% had a principal diagnosis of dementia, and 44% had no dementia. In adjusted analyses, enrollees with coexisting dementia had high rates of needing help with 3-6 activities of daily living, similar to enrollees with principal dementia (62% vs. 67%). Enrollees with coexisting dementia had high clinical needs, similar to those with no dementia, for example, 63% versus 61% had bothersome pain. Care quality was worse for enrollees with coexisting dementia versus principal dementia (e.g., 61% vs. 79% had anxiety/sadness managed) and similar to those with no dementia. Enrollees with coexisting dementia had similar hospice use patterns as those with principal diagnoses and higher rates of problematic use patterns compared to those with no dementia (e.g., 16% vs. 10% live disenrollment, p = 0.004). CONCLUSIONS: People with coexisting dementia have functional needs comparable to enrollees with principal diagnoses of dementia, and clinical needs comparable to enrollees with no dementia. Changes to hospice care models and policy may be needed to ensure appropriate dementia care.

Role of Home Health for Community-Dwelling Older Adults Near the End of Life: A Resource Beyond Hospice?

Background: Medicare home health could be leveraged to care for those near the end of life (EOL), especially for those who cannot access nor desire the Medicare hospice benefit. It is unknown what role home health currently has either preceding or as an alternative to hospice use. Objective: The aim of this study is to compare populations served and visit patterns of Medicare beneficiaries receiving home health/hospice/both near the EOL. Design: Nationally representative cohort study of National Health and Aging Trends Study (NHATS) respondents. Setting/Subjects: A total of 1,057 U.S. decedents in NHATS from 2012 to 2017 with linked Medicare claims were included in this study. Measurements: Measurements included the proportion of decedents who received home health/hospice/both/neither (yes/no) in the last six months of life (EOL) and mean number of visits by discipline (nurse/therapist [physical/occupational speech-language pathologist]/social worker/home health aide) per 30 eligible days at home for home health/hospice/both at the EOL. The primary independent variable was the clinician discipline providing services (nurse/therapist/social worker/aide). Results: In our sample, 19.9% received home health only, 25.8% hospice only, 18.8% both, and 35.6% neither at the EOL. These populations varied in their demographic, region, and clinical characteristics. Decedents who received home health only compared with hospice only were younger (44.1% over age 85 vs. 58.4%), members of a racially/ethnically diverse group (19.7% vs. 10.9%), and with less disability (37.2% required no assistance with activities of daily living vs. 22.7%), all p values <0.05. In adjusted models, those receiving home health versus hospice received similar numbers of visits per 30 days (average 5.4/30 vs. 6.6/30), while those receiving both received more visits (10.5/30). Home health provided more therapy visits, while hospice provided more social work and aide visits. Conclusions: More than one in three Medicare decedents nationwide received home health at the EOL. Home health has the potential to serve a population not reached by hospice and improve the quality of end-of-life care.

Hospice Improves Care Quality For Older Adults With Dementia In Their Last Month Of Life.

The Medicare hospice benefit was originally designed around a cancer disease paradigm but increasingly serves people living with dementia. At this time, almost half of all older adults receiving hospice care have dementia. Yet there is minimal evidence as to whether hospice benefits people living with dementia outside of nursing facilities. We asked whether and how the perceived quality of last-month-of-life care differed between people with and without dementia and whether hospice use among people living with dementia was associated with perceived quality of care compared with the quality of care for those who did not use hospice. We used nationally representative data from the National Health and Aging Trends Study and Medicare claims from the period 2011-17 to examine the impact of hospice enrollment on proxy perceptions of last-month-of-life care quality. Proxies of people living with dementia enrolled in hospice compared with proxies of those not enrolled more often reported care to be excellent (predicted probability: 52 percent versus 41 percent), more often reported having anxiety or sadness managed (67 percent versus 46 percent), and less often reported changes in care settings in the last three days of life (10 percent versus 25 percent). There were no differences in the impact of hospice on proxy ratings of care for people with and without dementia. Policy makers should consider these benefits when weighing changes to hospice policy and regulations that may affect people living with dementia.

A national study of disenrollment from hospice among people with dementia.

BACKGROUND: People with dementia (PWD) are at high risk for hospice disenrollment, yet little is known about patterns of disenrollment among the growing number of hospice enrollees with dementia. DESIGN: Retrospective, observational cohort study of 100% Medicare beneficiaries with dementia aged 65 and older enrolled in the Medicare Hospice Benefit between July 2012 and December 2017. Outcome measures included hospice-initiated disenrollment for patients whose rate of decline ceased to meet the Medicare hospice eligibility guideline of "expected death within 6 months" (extended prognosis) and patient-initiated disenrollment (revocation). Hospice, regional, and patient risk factors and variation were assessed with multilevel mixed-effects logistic regression models. RESULTS: Among 867,695 hospice enrollees with dementia, 70,945 (8.2%) were disenrolled due to extended prognosis and 43,133 (5.0%) revoked within 1-year of their index admission. There was substantial variation in hospice provider disenrollment due to extended prognosis (10th-90th percentile 4.5%-14.6%, adjusted median odds ratio (MOR) 1.86, 95% confidence interval (CI) 1.82, 1.91) and revocation (10th-90th percentile 2.5%-10.1%, MOR 2.09, 95% CI 2.03, 2.14). Among hospital referral regions (HRR), there was more variation in revocation (10th-90th percentile 3.5%-7.6%, MOR 1.4, 95% CI 1.34, 1.47) than extended prognosis (10th-90th percentile 7.0%-9.5%, MOR 1.23, 95% CI 1.18, 1.27), with much higher revocation rates noted in HRRs located in the Southeast and Southern California. A number of patient and hospice characteristics were associated with higher odds of both types of disenrollment (younger age, female sex, minoritized race and ethnicity, Medicaid dual eligibility, Medicare Part C enrollment), while some were associated with revocation only (more comorbidities, newer, smaller, and for-profit hospices). CONCLUSIONS: In this nationally representative study of hospice enrollees with dementia, hospice disenrollment varied by type of hospice, geographic region, and patient characteristics including age, sex, race, and ethnicity. These findings raise important questions about whether and how the Medicare Hospice Benefit could be adapted to reduce disparities and better support PWD.

The Association Between Race and Place of Death Among Persons With Dementia.

CONTEXT: Little is known about racial differences in place of death for persons with dementia (PWD), who may be especially vulnerable to receiving care at end of life that is not concordant with their goals or that places higher burden on caregivers. OBJECTIVES: To determine if there are racial and ethnic differences in place of death among PWD. METHODS: We analyzed data from the nationally representative National Health and Aging Trends study. Participants were included if they had probable dementia as defined by a previously validated algorithm and died between 2012 and 2020. Race and ethnicity were self-reported. Place of death was obtained from post-mortem interviews with bereaved caregivers. RESULTS: The sample included 993 decedents with dementia (81.4% white; 11.0% black, 7.6% hispanic). A higher percentage of black and hispanic decedents died in the hospital (30.3% and 32.8%, respectively) compared to white decedents (19.0%). A higher percentage of white decedents died in the nursing home (31.0%) than black (22.4%) or hispanic decedents (15.0%) In adjusted analyses, black decedents had a higher odds of hospital death (AOR 1.50; 95% CI 1.01, 2.24) compared to white decedents, with similar trends found for hispanic decedents. CONCLUSION: We found racial and ethnic differences in location of death for PWD, with black and hispanic PWD more likely to die in the hospital compared to white PWD. More research is needed to determine if the differences found represent goal concordant care or rather lack of access to high quality of care at the end of life.

Life expectancy for community-dwelling persons with dementia and severe disability.

BACKGROUND: Understanding life expectancy can help persons with dementia, their care partners, and policymakers plan for what lies ahead. We sought to determine life expectancy and predictors of mortality for community-dwelling persons with dementia and severe disability. METHODS: Using the National Health and Aging Trends Study (NHATS) linked to Medicare claims, we identified community-dwelling respondents age 65+ who entered NHATS in 2011 with dementia and severe disability (defined as three impairments in activities of daily living), or who subsequently met criteria for dementia and then severe disability. We estimated time to death based on the timing of meeting severe disability criteria. We conducted parametric survival analyses using a Gompertz distribution to calculate risk of death and predicted median time to death. Predictors included demographic, functional, clinical characteristics, and behavioral symptoms (assessed among NHATS respondents with proxy interviews). RESULTS: Among 842 community-dwelling persons with dementia and severe disability, 80.5% died during the study period. After adjusting for age and gender, overall predicted median time to death was 1.7 years (25th percentile 0.6, 75th percentile 3.8 years). Six notable characteristics were associated with shorter life expectancy: 1) older age (90+), with a predicted median time to death of 1.0 year (0.4, 2.1); 2) being bedbound, 1.1 years (0.4, 2.3); 3) being homebound, 1.2 years (0.5, 2.6); 4) having comorbid cancer, 1.2 years (0.5, 2.6); 5) unintended weight loss, 1.4 years (0.5, 3.1); and 6) comorbid depression, 1.5 years (0.6, 3.3). CONCLUSIONS: Community-dwelling persons with dementia and severe disability lived a median of 1.7 years. Clinicians can use the study findings to provide anticipatory guidance to patients and care partners, and policymakers to inform design of longitudinal supportive services.

Incidence of potentially disruptive medical and social events in older adults with and without dementia.

BACKGROUND: Potentially disruptive medical, surgical, and social events-such as pneumonia, hip fracture, and widowhood-may accelerate the trajectory of decline and impact caregiving needs in older adults, especially among people with dementia (PWD). Prior research has focused primarily on nursing home residents with dementia. We sought to assess the incidence of potentially disruptive events in community-dwelling people with and without dementia. METHODS: Retrospective cohort study of participants aged 65+ enrolled in the Health and Retirement Study between 2010 and 2018 (n = 9346), including a subset who were married-partnered at baseline (n = 5105). Dementia was defined with a previously validated algorithm. We calculated age-adjusted and gender-stratified incidence per 1000 person-years and incidence rate ratios of: 1) hospitalization for pneumonia, 2) hip fracture, and 3) widowhood in people with and without dementia. RESULTS: PWD (n = 596) were older (mean age 84 vs. 75) and a higher proportion were female (67% vs. 57%) than people without dementia (PWoD) (n = 8750). Age-adjusted incidence rates (per 1000 person-years) of pneumonia were higher in PWD (113.1; 95% CI 94.3, 131.9) compared to PWoD (62.1; 95% CI 54.7, 69.5), as were hip fractures (12.3; 95% CI 9.1, 15.6 for PWD compared to 8.1; 95% CI 6.9, 9.2 in PWoD). Point estimates of widowhood incidence were slightly higher for PWD (25.3; 95% CI 20.1, 30.5) compared to PWoD (21.9; 95% CI 20.3, 23.5), but differences were not statistically significant. The association of dementia with hip fracture-but not pneumonia or widowhood-was modified by gender (male incidence rate ratio [IRR] 2.24, 95% CI 1.34, 3.75 versus female IRR 1.31 95% CI 0.92,1.86); interaction term p = 0.02). CONCLUSIONS: Compared to PWoD, community-dwelling PWD had higher rates of pneumonia and hip fracture, but not widowhood. Knowing how often PWD experience these events can aid in anticipatory guidance and care planning for this growing population.

Impact of Comorbid Dementia on Patterns of Hospice Use.

Background: The evidence base for understanding hospice use among persons with dementia is almost exclusively based on individuals with a primary terminal diagnosis of dementia. Little is known about whether comorbid dementia influences hospice use patterns. Objective: To estimate the prevalence of comorbid dementia among hospice enrollees and its association with hospice use patterns. Design: Pooled cross-sectional analysis of the nationally representative Health and Retirement Study (HRS) linked to Medicare claims. Subjects: Fee-for-service Medicare beneficiaries in the United States who enrolled with hospice and died between 2004 and 2016. Measurements: Dementia was assessed using a validated survey-based algorithm. Hospice use patterns were enrollment less than or equal to three days, enrollment greater than six months, hospice disenrollment, and hospice disenrollment after six months. Results: Of 3123 decedents, 465 (14.9%) had a primary hospice diagnosis of dementia and 943 (30.2%) had comorbid dementia and died of another illness. In fully adjusted models, comorbid dementia was associated with increased odds of hospice enrollment greater than six months (adjusted odds ratio [AOR] = 1.52, 95% confidence interval [CI]: 1.11-2.09) and hospice disenrollment following six months of hospice (AOR = 2.55, 95% CI: 1.43-4.553). Having a primary diagnosis of dementia was associated with increased odds of hospice enrollment greater than six months (AOR = 2.62, 95% CI: 1.86-3.68), hospice disenrollment (AOR = 1.82, 95% CI: 1.32-2.51), and hospice disenrollment following six months of hospice (AOR = 4.31, 95% CI: 2.37-7.82). Conclusion: Approximately 45% of the hospice population has primary or comorbid dementia and are at increased risk for long hospice enrollment periods and hospice disenrollment. Consideration of the high prevalence of comorbid dementia should be inherent in hospice staff training, quality metrics, and Medicare Hospice Benefit policies.

Earlier initiation of palliative care in the disease trajectory of people living with dementia: a scoping review protocol.

INTRODUCTION: While the need for palliative care for people living with dementia has widely been recognised, they continue to be a disadvantaged group when it comes to timely initiation, and controversies remain regarding appropriate timing, or what elements constitute high quality palliative care early in the disease trajectory. To date, no literature review has summarised this debate or offered insights. The aim of this scoping review is to provide a general overview of research regarding palliative care in mild or moderate dementia, to identify existing controversies, and to examine what are key components of palliative care in dementia, specifically when initiated earlier in the disease trajectory. METHODS AND ANALYSIS: Consistent with recent guidelines and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, we carried out a search for academic literature in PubMed, CINAHL, EMBASE, Cochrane Library, PsycINFO, Web of Science; on 5 November 2019 and an updated search on 2 February 2021. We will include studies with different study designs published in English over the last decade that focused on palliative care in early stages of dementia. We will include models targeting at least one outcome domain of palliative care (physical, psychological, social or spiritual) and advance care planning, and will exclude hospice models with limited prognosis similar to the requirements in the USA. We will report study characteristics and quality. We aim to apply narrative synthesis techniques to develop a theoretical model of how, for whom and why palliative care can be relevant in early stages of dementia, and what are facilitators and barriers. We anticipate to also describe if and how the concept of (early) palliative care in dementia changed across time and studies. ETHICS AND DISSEMINATION: No ethical review required. Results will identify research gaps and lay out basic principles for conceptualising palliative care in early stages of dementia.