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Background: The terminal illness of late-stage (advanced) Alzheimer's and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die-which many advance directives cannot provide. Proxies/agents' substituted judgment may not be concordant with patients' requests. While advance directives can be patients' last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive's requests to cease assisted feeding., Aim: This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters' selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are  implemented. The article includes excerpts from "dementia-specific" directives or supplements that exemplify each flaw-mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests "Cease assisted feeding" but the incapacitated patient apparently expresses the desire to "Continue assisted feeding." Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities' additional clinical criteria as a prerequisite to honor the requests in patients directives., Conclusion: This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients' wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care?, (© 2022. The Author(s).)

Widespread access to emerging information and communication technologies (ICT) allows its use for the screening of diseases in the general population. At the initiative of the Spanish Confederation of Associations of Families of People with Alzheimer's disease and other dementias (CEAFA), a website (http://www.problemasmemoria.com) has been created that provides information about Alzheimer's disease and includes questionnaires to be completed by family or friends concerned about memory problems of a relative. A cross-sectional, randomized, multicenter study was performed to evaluate feasibility, validity, and user satisfaction with an electronic method of completion vs. the current method of paper-based questionnaires for clinically dementia screening completed by the informants: the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) and the Alzheimer's disease-8 screening test (AD8). A total of 111 pairs were recruited by seven memory clinics. Informants completed IQCODE and AD8 questionnaires both in their paper and electronic versions. The correlation between paper and electronic versions was significantly positive for IQCODE (r = 0.98; p < 0.001) and AD8 (r = 0.96; p < 0.001). The execution time did not differ significantly, and participants considered their use equally easy. This study shows that an electronic version of the IQCODE and AD8 questionnaires is suitable for its online use via the internet and achieves the same results as the traditional paper versions. [ABSTRACT FROM AUTHOR]

There is a global need to understand how the quality of home care for persons living with dementia is perceived by their most frequent formal caregivers, personal support workers (PSW), especially given the expected rise in the prevalence of dementia. The aim of this study was to explore the perceptions of PSW regarding what constitutes quality home care for persons with dementia. Qualitative content analysis was undertaken to interpret semi-structured interviews with PSW (N = 15). Study findings indicate that quality home care is perceived to be (1) person-centered; (2) provided by PSW with dementia-specific education and training; (3) facilitated by specific PSW experiences, abilities and characteristics; (4) enhanced by accessible information, services and education for persons with dementia and their caregivers; (5) provided by an inclusive dementia care team; and (6) facilitated by organisational supports and respect. However, findings also indicated differences in what PSW perceive as quality home care versus what they are experiencing when providing care for persons with dementia. Participants advocated for increased supports to them through ongoing dementia-specific education and training, increased teamwork among care providers, increased wages, sufficient and qualified staffing, and increased exchange of client information. The findings highlight the importance of exploring front-line workers' perspectives and how they can help revise current healthcare policies and inform future policy development., (© 2021 John Wiley & Sons Ltd.)

This study used a qualitative, cross-sectional design to address a gap in understanding the perspectives and practices of care planners and case managers in supporting consumer- directed care (CDC) for community dwelling people living with dementia. Semi-structured telephone interviews were conducted with a convenience sample of n = 16 planners and managers from seven providers of the Australian home care packages (HCP) program in NSW (Australia). All interviewees described the aspirations of supporting choice within CDC as synergistic with their values and with person-centred care. Some described new flexibilities within the more open-ended planning conversations enabled by CDC. However, most acknowledged their capacity to enable choice for clients with dementia was limited by the capped care budgets, as well as the skills and time needed to support choice and decision- making. Organisational practice changes associated with the shift to a market-based system were also perceived as limiting the capacity to support choices. Reducing centralised systems, increasing individual budgets and improving staff capacity to support decision-making by people with dementia may help to improve this situation. However, results suggest a deeper need to re-evaluate whether the CDC model is the most appropriate for supporting the rising numbers of people with dementia to age well in place., (© 2022 John Wiley & Sons Ltd.)

Aim: To explore the components of personal passports for people living with dementia in an acute healthcare setting., Background: Globally, supporting people with dementia poses a prominent health and social care challenge. Importance for people with dementia in an acute healthcare setting includes social relationships and communication with healthcare staff. A personal passport is an international initiative designed to support the personhood of the person living with dementia., Methods: This integrative review is based on the methodology of Whittmore and Knafl (2005). The Preferred Reporting for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and checklist were adhered to. A database search of PubMed, MEDLINE, CINAHL, Scopus and EBSCO databases was systematically performed., Results: This integrative review identified nine research studies on the components of personal passports that met the inclusion and exclusion criteria. A constant comparative method of data analysis identified five key pivotal themes: person-centredness, communication, family/carer involvement, education and leadership., Conclusion: The use of personal passports supports the provision of person-centred care for people living with dementia through enhancing the well-being of both the person and their families/caregivers., Relevance to Clinical Practice: Personal passports are an important document and should be determined by the person with dementia, their care needs and the caregiver's role in meeting these needs., (© 2021 John Wiley & Sons Ltd.)

Aim and Objectives: To explore the experiences of caregivers of persons with dementia and dementia coordinators regarding their collaboration in care for a person with dementia and the feasibility of using technology in this collaboration., Background: Caregivers of persons with dementia have a significant risk of developing physical strain and psychological stress due to caregiver burden. Internationally, the use of technology is rapidly evolving in health care. Dementia coordinators employed in municipalities in Denmark support caregivers of persons with dementia, thus helping management of life with dementia. The cooperation between dementia coordinators and caregivers is essential, and the use of technology in everyday life is inevitable., Methods: A qualitative, exploratory, descriptive design was used. Data were derived from five focus group interviews in which 13 caregivers and 14 dementia coordinators participated. The participants' narratives were used to elucidate their experiences and attitudes, and data were analysed using thematic analysis. The study reports according to the COREQ checklist., Results: The analysis revealed three themes: the need for creating a safety net in everyday life, the need for moving together in the right direction and the need for handling technology while preserving relational interaction., Conclusions: Technology might be used as a mediator to help ease some caregiving tasks or the burden of caregiving. However, technology is an area in which the caregivers must rely on their competences and initiatives. Even though the collaboration between caregivers and dementia coordinators was beneficial and supportive, dementia coordinators experienced technology as outside the core elements of their daily work., Relevance to Clinical Practice: We suggest further discussion regarding who is best suited to support caregivers in making choices regarding which technologies to implement in caring for a person with dementia. If this discussion is not taken seriously, there is a risk of leaving caregivers in a technological quagmire., (© 2020 John Wiley & Sons Ltd.)

Background: A randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers' perceptions of their own and their care-recipients' needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge., Methods: The CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient's life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer's perception of the care recipient's future needs, carer's current needs, and a proposed current and future care plan. The researcher's philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants' reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied., Results: Thirty carer participants were included. Analysis identified three major themes: Carers' perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions., Conclusion: The CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer., Trial Registration: Australian Clinical Trials Registration: (ACTRN12619001187134)., (© 2023. The Author(s).)

This study aimed to explore factors associated with ambulance use and emergency department (ED) visits among people with dementia in the month before death. A web-based survey of bereaved family caregivers of people with dementia was conducted in March 2020. Multivariate logistic regression analyses were conducted with ambulance use and ED visits in the month before death as dependent variables. Age and gender of people with dementia and their family caregivers, home care use, decision-makers, comorbidities, degree of independence in daily living, and caregivers' preparedness for death were independent variables. Data were collected from 817 caregivers of people with dementia who had died at hospitals (52.4%), long-term care facilities (25.0%), or own homes (22.4%). Caregivers' lack of preparedness for death was significantly associated with ambulance use in the month before death. Comorbidites and males with dementia were significantly associated with ED visits in the month before death. Better death preparedness of family caregivers may reduce ambulance use for symptoms that can be more effectively addressed by palliative care than acute care for people with dementia., (© 2023 The Authors. Nursing & Health Sciences published by John Wiley & Sons Australia, Ltd.)

Drug discovery and clinical trial design for dementia have historically been challenging. In part these challenges have arisen from patient heterogeneity, length of disease course, and the tractability of a target for the brain. Applying big data analytics and machine learning tools for drug discovery and utilizing them to inform successful clinical trial design has the potential to accelerate progress. Opportunities arise at multiple stages in the therapy pipeline and the growing availability of large medical data sets opens possibilities for big data analyses to answer key questions in clinical and therapeutic challenges. However, before this goal is reached, several challenges need to be overcome and only a multi-disciplinary approach can promote data-driven decision-making to its full potential. Herein we review the current state of machine learning applications to clinical trial design and drug discovery, while presenting opportunities and recommendations that can break down the barriers to implementation., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Background: Primary care physicians (PCP) play a key role in the care of people living with dementia. However, the implementation and practicability of the German S3 Dementia Guideline in primary care remain unclear. The main objective of the present study was to evaluate an intervention for improving guideline-based dementia care in primary care., Design: A two-arm, 9-month follow-up cluster-randomized controlled trial with two parallel groups., Setting: 28 primary care practices in Berlin and the surrounding area in Germany., Participants: A total of N = 28 PCP, N = 91 people living with dementia, and N = 88 informal caregivers participated in the trial., Intervention: A tablet-based intervention to improve adherence to the German S3 Dementia Guideline in primary care was compared to a control group (care as usual plus a handbook on dementia). MeasurementsAdherence to dementia guideline (primary outcome) was measured on PCP' (23 items) and informal caregivers' level (19 items) with a self-developed checklist. Secondary outcomes (quality of life, neuropsychiatric symptoms, activities of daily living, general health status, depression, and caregiver burden) were measured with standardized assessments. Also, post-hoc per-protocol analyses were conducted., Results: No differences in guideline adherence between the intervention and the control group were observed. Further, no significant impact of the intervention on secondary outcomes was detected., Conclusion: The DemTab Study did not improve self-reported guideline adherence in PCP. However, important implementation barriers such as lack of interoperability and low applicability of existing German S3 Dementia Guideline in the primary care setting were identified and are being discussed., Trial Registration: The DemTab trial was prospectively registered with the ISRCTN registry (Trial registration number: ISRCTN15854413). Registered 01 April 2019, https://doi.org/10.1186/ISRCTN15854413., (© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Objectives: Multiple modifiable risk factors exist across the lifespan to reduce dementia prevalence, and public understanding of these factors is increasing. Yet dementia is frequently misunderstood and stigmatised, and dementia prevention is not generally recognised as a health priority. Current limitations of public health campaigns for dementia prevention must be addressed and innovative alternatives developed to improve public comprehension and implementation of preventative action across all stages of life., Methods: In searching various databases and public information on dementia prevention, restraints were found in current health messaging which did not reflect the complexity of this health issue and address diversity of its impact across cultures and ages. In consultation with researchers and public health organisations, we outline four case studies in Australia where innovative arts-based approaches have been adopted and discuss the potential for arts-based approaches to address these gaps., Results: Arts-based approaches have the unique capacity to shift perceptions on ageing and dementia, overcome language and literacy barriers, represent health concerns across cultures, and actively involve individuals, communities and healthcare professionals in the process of dementia prevention. Future campaigns can engage a variety of communities and environments with art mediums suited to their preferences, capacities and efficacy., Conclusions: Recommendations include example mediums, environments and people to engage. Future research is required to understand the impact of, and to improve, the long-term adoption of innovative arts-based approaches in dementia prevention practices., (© 2023 The Authors. Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc’.)

What Is Known on the Subject: Research has shown effectiveness of nonpharmacological interventions in improving or maintaining cognition, mood, functioning, self-efficacy and quality of life for persons with mild-to-moderate dementia (PWDs). These interventions are critical during the earlier stages of dementia. However, Canadian and international literature report underutilization of and difficulty accessing the interventions., What This Paper Adds to Existing Knowledge: To our knowledge, this is the first review that explored factors influencing seniors' utilization of nonpharmacological interventions in the earlier stages of dementia. This review contributed to the discovery of unique factors such as PWDs' beliefs, fears, perceptions, and acceptability of nonpharmacological interventions and environmental influences on intervention provision. PWDs' intervention uptake may appear as a matter of personal choices related to individuals' knowledge, beliefs and perceptions. However, the analysis of the research evidence suggests that PWDs' choices are shaped by environmental factors such as formal and informal caregiver support, acceptability and accessibility of nonpharmacological interventions, dementia care workforce, community's attitudes towards dementia and funding. The complex interplay among factors highlights the importance of targeting health promotion strategies at both individuals and their environments., What Are the Implications for Practice: The review findings feature opportunities for healthcare practitioners, including mental health nurses, in advocating for PWDs' evidence-informed decision-making and access to desired nonpharmacological treatments. Involvement of patients and families in care-planning through ongoing assessment of health and learning needs, as well as enablers and barriers to using interventions, continuing information provision, and personalized referrals to appropriate services can promote PWDs' rights to healthcare., Abstract: INTRODUCTION: Despite the significance of nonpharmacological interventions in optimal management of mild-to-moderate dementia, it remains unclear in the literature how persons with mild-to-moderate dementia (PWDs) view, understand and access nonpharmacological interventions., Aim: The purpose of this review was to explore the extent and nature of evidence concerning factors that influence the use of nonpharmacological interventions for community-dwelling seniors with mild-to-moderate dementia., Method: An integrative review was undertaken following Toronto and Remington (A step-by-step guide to conducting an integrative review, 2020)'s instruction which expanded Torraco (Human Resource Development Review, 2016, 15, 404)'s and Whittemore and Knafl (Journal of Advanced Nursing, 2005, 52, 546)'s guidance., Results: The review of 16 studies suggests that PWDs' use of nonpharmacological interventions is shaped by a complex interplay of various personal, interpersonal, organizational, community and political influences., Discussion: The findings highlight the complex, interrelated relationships among multiple factors and subsequent limitations of behaviour-oriented health promotion strategies. To assist PWDs in making healthier choices, health promotion strategies need to direct attention to both individuals' behaviours and environmental conditions impacting the behaviours., Implications for Practice: The findings of this review can inform multidisciplinary health practitioners' (including mental health nurses) practice with seniors living with mild-to-moderate dementia. We recommend actionable ways in which they can empower patients and their families in dementia management., (© 2023 The Authors. Journal of Psychiatric and Mental Health Nursing published by John Wiley & Sons Ltd.)

Introduction: Efficient healthcare planning requires reliable projections of the future increase in costs and quality-adjusted life years (QALYs) lost due to dementia., Methods: We used the microsimulation model MISCAN-Dementia to simulate life histories and dementia occurrence using population-based Rotterdam Study data and nationwide birth cohort demographics. We estimated costs and QALYs lost in the Netherlands from 2020 to 2050, incorporating literature estimates of cost and utility for patients and caregivers by dementia severity and care setting., Results: Societal costs and QALYs lost due to dementia are estimated to double between 2020 and 2050. Costs are incurred predominantly through institutional (34%), formal home (31%), and informal home care (20%). Lost QALYs are mostly due to shortened life expectancy (67%) and, to a lesser extent, quality of life with severe dementia (14%)., Discussion: To limit healthcare costs and quality of life losses due to dementia, interventions are needed that slow symptom progression and reduce care dependency., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Aim: To explore the experiences of residents, families and staff in the establishment of a new small-scale home model of care for people living with dementia., Background: New and innovative small-scale models of care have the potential to improve outcomes for older people, especially those with dementia, who experience high rates of cognitive impairment in traditional residential aged care homes in Australia., Design: A qualitative descriptive study., Methods: Semi-structured interviews with 14 guests, family and staff of a new small-scale dementia home named 'Kambera House' in the Australian Capital Territory were conducted between July 2021 when the home opened and August 2022. Data were analysed using reflexive thematic analysis and reported according to the COREQ guidelines., Results: Two guests with mild-to-moderate dementia, five family and seven staff members participated in the study. The data revealed high satisfaction with Kambera House, generating five themes. Falls detection technology in the home provided a sense of safety, enabling more time for person-centred care. Free, everyday technology connected the home with families as part of an overall community of care where staff were empowered to maximize choice and dignity of risk of guests living in the home. This contributed to the sense of community, rather than an institution, where the conditions of work supported the conditions of care, and were embedded in a culture of responsiveness, change and flexibility., Conclusion: Kambera House represents a successful example of a new small-scale dementia home. Technology played an important background role in improving overall safety and flexibility as part of a model of care which demonstrated positive experiences for guests and families by being responsive to their individual needs., Impacts: Small-scale homes for people with dementia offer an alternative model that may provide more individualized, person-centred care compared with the traditional institutionalized care., Patient or Public Contribution: No patient or public contribution., (© 2023 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Many physicians rely on sum score cognitive screening tests to evaluate patients for cognitive decline. Because the vast majority of cognitively impaired patients never receive more extensive testing, the results of these screening tests impact patients and their family members profoundly. No previous study has examined whether the metrics used by the popular Mini-Mental State Examination, Montreal Cognitive Assessment, and Saint Louis University Mental Status tests reliably identify single-domain deficits or allow clinicians to adequately track disease progression. We compare side by side the metrics used by these three tests to highlight the differences in the ways they measure domain impairments. We then contrast the sum score approach to cognitive screening with brief domain-specific tests that use extended metrics in each domain examined. Last, we suggest that moderate-to-severe domain-specific deficits on these tests should lead physicians to anticipate specific functional problems and alert family members., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Objective: The Severe Behaviour Response Team (SBRT) program, which was established in 2015 to support aged care residents with dementia experiencing very severe and extreme responsive behaviours received far fewer referrals than projected during its first year. This article describes the outcomes of a brief survey to identify potential barriers to referrals and identify opportunities to improve the uptake of the service., Methods: A pragmatic, quasi-experimental study was conducted involving clinical leads working in a representative sample of care homes that had not used the SBRT. The study was part of the formative evaluation activities of an ongoing program evaluation., Results: Of the 53 clinical leads that participated in the survey, one-third had not heard of the SBRT prior to being contacted. The remaining two-thirds (n = 36) had not used the service due to the availability of existing resources and concerns regarding responsiveness of, and access to, the new service., Conclusions: Three themes emerged from the study relating to awareness of the service, responsiveness and the interface between local aged care and health services. Referrals increased following interventions to address the first two themes; however, they continue to remain well below the number projected. This indicates a fundamental disconnection between the policy design process and the day-to-day experience of residential aged care. The study highlights the importance of aged care clinical leads being engaged in dementia policy and program development processes to support improved targeting of resources., (© 2022 AJA Inc.)

Introduction: The number of people with dementia (PwD) dying in long-term care (LTC) settings is expected to increase. However, effective care strategies to promote a good death for PwD remain unclear. This study aimed to explore nurses' perceptions of a good death for PwD in LTC settings for older adults., Methods: Interviews were conducted with 19 nurses providing end-of-life care in LTC settings for older adults in Japan. The transcribed texts were analysed using inductive content analysis., Results: We identified two themes: (1) ambiguity and (2) preparedness. Participants perceived that there was ambiguity regarding a good death for PwD and emphasised the need for preparedness of those around PwD for a good death. Five categories represented preparedness: (a) reaffirming the original personality before dementia; (b) respecting that PwD change; (c) interpreting and fulfilling obscure desires, feelings, and sensations; (d) providing care consistent with an agreed-upon natural death process; and (e) maintaining relationships., Conclusion: Long-term care nurses should encourage families and multidisciplinary team members, including the nurses themselves, to prepare for a good death of the PwD. Future research should focus on healthcare professionals' perspectives on advance care planning in the early stages of dementia, as well as the perceptions of PwD, their family members and other healthcare professionals regarding the natural death process., (© 2021 John Wiley & Sons Ltd.)

Background: Word retrieval skills change across the lifespan. Permanent alterations in the form of decreased accuracy or increased response time can be a consequence of both normal ageing processes or the presence of acquired and neurodegenerative disorders (e.g., aphasia and dementia). Despite the extensive literature exploring the neuroanatomical underpinnings of word retrieval, psycholinguistic, biolinguistic and theoretical explanations, and the vast amount of evidence from primary and secondary language disorders, the best approach to consistently capture these changes is yet to be discovered. Aims: The goal of this paper is to determine which method(s) stand(s) as the most suitable candidate(s) to provide an accurate picture of word retrieval in the oral production of different groups of adult speakers, including cases of healthy ageing, preclinical Alzheimer's disease (AD), mild cognitive impairment (MCI), aphasia and dementia. Methods & Procedures: Using an integrative review of recent peer-reviewed journal articles, we provide an overview of the different behavioural methods traditionally used to measure oral naming skills in research-oriented and clinical protocols and discuss their main advantages and limitations. Main Contribution: Most existing studies are based on the results of people with diagnosed language disorders. Despite the growing interest, the reliability of the majority of the tasks to detect subtle changes associated with healthy ageing, MCI and preclinical AD are yet to be demonstrated, and the delicate balance between informativeness and efficiency (especially in terms of administration time and variable control) in experimental protocols is yet to be achieved. In this article we propose the pursuit of an integrative overarching methodology to characterize all naming deficits (from anecdotal to permanent) and all adult populations (from healthy to pathological ageing). Conclusions & Implications: A combination of spontaneous speech data and results from structured tasks stands as the best approach to capture changes in word retrieval skills of adult speakers with and without observable deficits. This review can guide future reflections on the necessary prerequisites of purpose-oriented, sensitive and reliable protocols for the detection of incipient word retrieval problems, thus contributing to the early diagnosis and the design of personalized multicomponent treatments.