Persons With Dementia Research Articles

Musical Bridges to Memory: A Pilot Dyadic Music Intervention to Improve Social Engagement in Dementia.

Music-based psychosocial interventions may provide effective management of behavioral symptoms in persons with dementia (PWDs). However, there has been a paucity of studies that measured their effect on social engagement. This proof-of-concept study evaluates efficacy of the Musical Bridges to Memory (MBM) intervention on PWD's social engagement, behavioral symptoms, and associated caregiver distress. Twenty-nine PWDs and caregivers (8 control dyads, 21 intervention) participated in this dyadically designed, prospective, blinded, 12-week controlled interventional study. The intervention consisted of weekly MBM sessions, led by board-certified music therapists and performers, including caregiver training, live performances, and social breakout groups. Outcomes were measured by the Verbal and Nonverbal Interaction Scale for Care Receivers (VNVIS-CR) to code interactions between PWDs and caregivers for verbal and nonverbal sociable and unsociable behaviors. Symptom severity and caregiver distress were measured using Neuropsychiatric Inventory. Nonverbal sociable interactions significantly increased ( P =0.012) in those who completed the MBM program as compared with a decrease observed in the control group. Family/caregiver distress associated with PWDs neuropsychiatric symptoms showed significant improvement in the experimental group as compared with controls ( P =0.045). This study provides proof-of-concept that MBM improves nonverbal sociable content of PWDs interactions and reduces caregivers' distress.

A-115 Identifying Factors Related to High Healthcare Utilization in a Group Of Persons with Dementia and their Caregivers

Abstract Objective: Identify factors related to high healthcare utilization in dementia patients to determine a high-risk profile and tailor the Care Ecosystem Program to subgroup needs. Methods: Cross-sectional data on persons with dementia (PWD) and caregivers (CG) enrolled in a branch of the Care Ecosystem Program (memory.ucsf.edu/Care-Ecosystem) were used. PWD had one emergency department (ED) visit or hospitalization prior 12-months. Data for 273 dyads included sociodemographics, healthcare utilization, dementia severity (Quick Dementia Rating Scale), and emotional wellbeing (i.e., Short-Form Zarit Burden Interview, Patient Health Questionnaire-9, Generalized Anxiety Disorder-7). High utilizers (HU) were more than two standard deviations above the mean for ED visits (N = 40) or hospitalizations (N = 42). Analyses included descriptive, frequencies, independent sample t-tests, and negative binomial regressions. Results: Mean age was 80 years for PWD and 64 years for CGs. Both were predominantly female (PWD = 60%, CG = 78%) and white (64%) with high school education or higher (PWD = 83.5%, CG = 97.4%). Dementia severity was mild to moderate (QDRS M = 11.4; SD = 6). ED-HU had higher/more dementia severity (p = 0.03, d = 6.2), medical comorbidities (p < 0.001, d = 2.4), medications (p = 0.047, d = 4.5), and preventable (p = 0.013, d = 0.7) and unpreventable (p < 0.001, d = 1.5) visits. Hospitalization HU presented increased neuropsychiatric severity (p = 0.048, d = 6.5) and medications (p = 0.012, d = 4.4). Negative binomial regression model for ED visits (p = 0.025) showed increased comorbidities as the only predictor (p = 0.034), while the model for hospitalizations (p = 0.010) was associated with Black race (p = 0.004), younger PWD (p = 0.033), and more medications (p < 0.001). Conclusions: Increased medical complexity was associated with HU for ED visits and hospitalizations in PWD-CG dyads. Additional research and possible need for variation in care management services are warranted.

End-of-Life Experiences Within a Dementia Support Program During COVID-19: Context and Circumstances Surrounding Death During the Pandemic.

Background: Persons with dementia (PWD) and their caregivers are uniquely impacted by the COVID-19 pandemic, including higher risk of mortality for PWD. Objectives: To describe the context and circumstances of deaths of PWD within a dementia support program during the COVID-19 pandemic. Design: Retrospective data collection of PWD deaths between March 1, 2020 and February 28, 2021. Setting/Subjects: Decedents enrolled in Care Ecosystem, a multidisciplinary team model for dementia care at University of California San Francisco, Ochsner Health, and UCHealth. Measurements: Using mixed methods, we analyzed data using descriptive measures and team-based thematic analysis to understand the end-of-life (EOL) experience of PWD-caregiver dyads. Results: Twenty-nine PWD died across three sites. Almost half (45%) were between ages 70-79 and 12 (41%) were women. Eighteen (62%) died at a private residence; two died in the hospital. Hospice was involved for 22 (76%) patients. There were known causes of death for 15 (53%) patients. Only two deaths were directly related to COVID-19 infection. Social isolation was perceived to have a high or very high impact for 12 (41%) decedents. Four qualitative themes were identified: (1) isolation due to the pandemic, (2) changes in use of dementia supports and resources, (3) impact on goals of care decisions, and (4) communication challenges for EOL care coordination. Conclusion: Among PWD and caregivers enrolled in a dementia support program, the COVID-19 pandemic had direct and indirect influences on mortality and EOL experiences of PWD. Caregivers’ experiences of caring, decision making, and bereavement were also affected.

The Knowledge and Attitudes of Primary Care and the Barriers to Early Detection and Diagnosis of Alzheimer's Disease.

Primary care physicians play a vital role in the clinical care of their patients, early identification of dementia, and disease advocacy. It is essential to assess the knowledge and attitudes of physicians in the diagnosis of Alzheimer’s disease and other dementias. In primary care, the diagnosis of Alzheimer’s disease is often missed or delayed. With the increased prevalence of Alzheimer’s disease and the growing impact of dementia on health care resources, early detection by primary care physicians (PCP) is essential. Thus, their knowledge and attitudes about early detection and diagnosis are crucial. To examine the knowledge and attitudes of primary care physicians regarding early detection and diagnosis of Alzheimer’s disease and how barriers may contribute to missed and delayed detection and diagnosis. An interpretive scope review was used to synthesize and analyze a body of literature published over the past decade. The study population are physicians in the United States. The current health systems experience challenges in providing early, safe, accurate, and comprehensive Alzheimer’s diagnosis and care by a primary care physician trained or knowledgeable in diagnosing the various forms of dementia. This article identifies several interrelated obstacles to early detection and diagnosis in primary dementia care, including gaps in knowledge, attitudes, skills, and resources for person with dementia (PWD)/caregivers and their primary care providers and systematic and structural barriers that negatively impact dementia care. Research shows that Alzheimer’s disease has gone underdiagnosed and undertreated. Delays in detection, diagnosis, and resource utilization may have social and clinical implications for individuals affected by Alzheimer’s disease and their families, including challenges in obtaining an accurate diagnosis. Until the issues of missed and delayed Alzheimer’s screening become more compelling, efforts to promote early detection and diagnosis should focus on the education of physicians and removing the barriers to diagnosis.

A Culturally and Linguistically Appropriate Telephone Support Intervention for Diverse Family Caregivers of Persons With Dementia During the COVID-19 Pandemic.

Caregivers of persons with dementia (PWDs) were socially isolated with little support during the COVID-19 pandemic "Stay-At-Home" order in the United States. To enhance social and emotional connection for diverse caregivers, a culturally/linguistically appropriate telephone intervention provided compassionate listening, mindful breathing, and COVID-19 safety education. The study purpose was to understand caregiving challenges and to evaluate the intervention for caregivers during the early pandemic using a qualitative approach. Twenty-three caregivers participated in the intervention provided by bilingual research assistants for 3 months. Call logs were used to describe the caregivers' dialogue. Thematic analysis identified (a) the challenges, including fear of coronavirus disease, providing around-the-clock care, and forced isolation and negative emotions; and (b) caregivers' experience with the intervention, including connecting with the outside, relief from emotional stress, reliable COVID-19 information, and reinformed caregiving skills. Results suggest that the telephone support was of benefit to diverse caregivers of PWDs during the pandemic by promoting social connection and reducing emotional distress.

Nonpharmacological Interventions for Management of Behavioral and Psychological Symptoms of Dementia in Long-Term Care Facilities by Direct Caregivers: A Systematic Review.

Behavioral and psychological symptoms of dementia (BPSD) are a worldwide problem. Estimates indicate approximately 96% of persons with dementia (PWD) exhibit BPSD that are directly associated with long-term care (LTC) placement and approximately one half of these persons experience symptoms classified as severe. BPSD are associated with lost days of work, high turnover, and poor job satisfaction for direct caregivers. Nonpharmacological interventions (NPIs) are effective for management of BPSD when used properly. NPIs are more likely to be used by direct caregivers who are knowledgeable about and have confidence in BPSD effectiveness. Various training techniques promote development of this self-efficacy. The current systematic review synthesizes evidence concerning the use of NPIs for management of BPSD by direct caregivers in LTC settings. Gaps in the literature include evaluation of positive impact of NPIs on PWD and behavior precedent factors. This review emphasizes the need for development and provision of quality NPI education for direct caregivers in LTC settings. [Journal of Gerontological Nursing, 48(7), 18-23.].

Is deception defensible in dementia care? A care ethics perspective.

Deception is common in dementia care, although its moral legitimacy is questionable. This paper conceptually clarifies when does dementia care involve deception and argues that care ethics is an appropriate ethical framework to guide dementia care compared with the mainstream ethical theories that emphasize abilities. From a perspective of care ethics, this paper claims that morally defensible deception is context-specific, embodied as a caring process that needs to be identified through instant, creative and interactive care procedures. According to this argument, it further analyses and concludes the moral rationality of deception in five common cases. While deception is morally justified in many situations, another concern is that it is usually not the last resort but a means of convenience. As the ability to interact, autonomy and dignity of persons with dementia (PWDs) are generally ignored; nurses need more training and education to master the essential procedures to ensure that the value of authenticity and autonomy is maintained and considered throughout dementia care.

The DAS-6: A Short Form of the Dementia Attitudes Scale.

Attitudes toward persons with dementia (PWD) are important predictors of emotional and behavioral outcomes for PWD and their caregivers. It is often desirable to have short, psychometrically-sound measures of such attitudes for inclusion in large community-based surveillance surveys and quick training assessments. The Dementia Attitudes Scale (DAS) is a 20-item scale that examines person-centered knowledge and perceptions of comfort working with PWD. Shorter versions of this scale have been used in various settings, although the psychometric properties of this abbreviated scale are unknown. This study used a principal components analysis to examine the properties associated with scales using a reduced number of items. Our final scale, the DAS-6 includes three items in each of the comfort and person-centered knowledge subscales.

Daily Sleep and Anxious and Depressive Symptoms Among Dementia Caregivers-The Mediation of Cortisol Total Output on High- and Low-Stress Days.

Dementia family caregivers report poor sleep and mood, typically attributed to chronic stress and managing frequent daily stressors. Although many studies use global retrospective reports of these indicators, the current study examines mechanisms linking sleep, negative affect, stress biomarkers, and high-/low-stress contexts at the daily level, from the biopsychosocial perspective of stressor exposure and reactivity. One hundred seventy-three caregivers (Mage = 61.97, SD = 10.66) were providing care at home and used adult day services (ADS) at least 2 days a week. Caregivers reported their bedtime, wake time, sleep quality, and nighttime problems of the person with dementia (PwD) daily for eight consecutive days, concurrently reporting noncare stressors, negative affect, and providing five salivary cortisol samples per day. We conducted multilevel analysis to examine whether caregiver sleep characteristics overnight (i.e., total time in bed, quality, and PwD sleep problems) were associated with their anxious and depressive symptoms on days where ADS were utilized versus non-ADS days (i.e., low stress vs. high stress), and whether cortisol daily total output as area under the curve (AUCg) mediated the direct associations, at the within- and between-person levels. On high-stress (i.e., non-ADS) days when caregivers had a longer time in bed than usual the night before, they were less anxious on the following day; the direct association was statistically mediated through lower cortisol AUCg during the day. Staying longer in bed than usual before an upcoming high-stress day may help dementia family caregivers better regulate cortisol stress reactivity and anxious symptoms.

Can Everyday Assistive Technologies Provide Meaningful Support to Persons With Dementia and Their Informal Caregivers? Evaluation of Collaborative Community Program.

One of the most challenging caregiving roles today is providing informal care to an individual with dementia. A new program, "AT-Home with Dementia," was created by three collaborative social service agencies to offer simple assistive technologies to persons with dementia and their informal caregivers. Staff, equipped with a traveling kit of everyday devices, offered items during home visits to enhance memory, functional activities, safety, and comfort of persons with dementia. A limited formative program review led to improvements in the new program's reach, service delivery, and data. The results showed that the program enhanced the home environment of the caregiving dyad and led to greater independence of persons with dementia (PWD) and self-assurance among caregivers. Existing community agencies may refer to this program to serve individuals with early-stage dementia. Finally, community agencies and funders may consider adapting this program to provide support to the informal care providers and PWD.

Caregiver burden and its associated factors among family caregivers of persons with dementia in Shanghai, China: a cross-sectional study

ObjectiveTo assess the level of caregiver burden and factors associated with it among family caregivers of persons with dementia (PWD) living in communities of Shanghai, China.DesignCross-sectional study.SettingCommunities in Hongkou District...

Determinants of long-term care service use by persons with dementia: A national dementia registry study conducted in Taiwan.

This study investigated the determinants and use of Taiwan's long-term care (LTC) Plan Version 2.0 (LTC 2.0) services by persons with dementia (PWDs) and their caregivers. In total, 1268 PWD-caregiver dyads were enrolled for analysis from a national dementia registry. Andersen's Behavioral Model of Health Services Use was used to investigate the association of LTC service use with several factors, namely the demographic data of PWDs and their caregivers, migrant caregiver employment, monthly household income, caregiver burden as determined by the Zarit Burden Interview (ZBI), Mini-Mental State Examination score, Clinical Dementia Rating scores, neuropsychiatric inventory scores for the behavioral and psychological symptoms of dementia, and PWDs' activities of daily living (ADLs). Among the studied family caregivers, 81.4% did not use LTC resources. A multivariable logistic analysis revealed that aberrant motor behaviors (odd ratio [OR]=1.31, 95% confidence interval [CI]=1.10-1.56, p=0.003), dysfunction in ADLs (OR=1.06, 95% CI=1.02-1.10, p=0.002), higher ZBI scores (OR=1.02, 95% CI=1.01-1.03, p=0.004), not residing with family members (OR=1.88, 95% CI=1.32-2.66, p<0.001), and not employing a migrant caregiver (OR=4.41, 95% CI=2.59-7.51, p<0.001) were the factors most significantly associated with LTC service use. Factors such as whether PWDs live alone, specific neuropsychiatric symptoms, and impaired function should be considered in future policy amendments to provide required activities and care resources for PWDs and their caregivers.

The impact of having foreign domestic workers on informal caregivers of persons with dementia \u2013 findings from a multi-method research in Singapore

BackgroundInformal caregivers of persons with dementia (PWDs) sometimes engage foreign domestic workers (FDWs) to support their caregiving journey. However, there has not been much research to establish if this is really beneficial. The current study aims to investigate whether engaging FDWs specifically for caregiving of PWDs truly moderates caregiver stress and to explore caregivers’ experiences of engaging FDWs.MethodsA multi-method study design with a quantitative and qualitative sub-study was adopted. For the quantitative sub-study, 282 informal caregivers of PWDs were recruited. Propensity score matching analysis was used. For the qualitative sub-study, 15 informal caregivers with FDWs were interviewed. Inductive thematic analysis was conducted.ResultsThe quantitative sub-study confirmed that engaging FDWs did moderate the depressive symptoms of informal dementia caregivers (marginal effect = -3.35, p = 0.0497). However, such support did not affect their caregiving burden, self-efficacy, and perceived positive aspects of caregiving. The qualitative sub-study suggested that engaging FDWs is an ambivalent experience, which entails both support and challenges.ConclusionsThe current study confirmed previous research findings, that engaging FDWs moderated depressive symptoms among caregivers of PWDs, and it could be through their physical support such as in daily caregiving activities. Policy-makers may consider providing more subsidies to caregivers caring for PWDs with mobility issues to hire FDWs. They may also consider providing training to FDWs on dementia caregiving skills and improving the intake of such training as this might be helpful for both FDWs and caregivers during this journey.

Digital outreach in online dementia discourse

Introduction: The rapid online expansion of social media can decrease social isolation for both caregivers and persons with dementia (PWD) through the digital communities they create. Background: PWD and their caregivers are increasingly turning to social media to express their own concerns and offer advice to each other. Material analyzed: Multimodal methods were used to analyze three online sites – two caregiver sites and one site for PWD. The sites are StoryCall, a video archive recorded by South Carolina caregivers about caring for US veterans with dementia; Molly and Joey, a video series of Joey’s interactions with his mother Molly, who had Lewy body dementia; and Dementia Diaries, oral diaries transcribed by volunteers. Results: The topics discussed online by people who wish to advise caregivers often differ from the issues and topics that most concern or interest caregivers. Persons with dementia openly shared that they still wished to live as well as possible and wanted to be seen as real people. Implications and conclusions: Through social media, PWD remind themselves and others that they are more than their condition; similarly, caregivers of PWD educate themselves and others through sharing experiences and asking questions.

Enhancement of Aging in Place: An Evolving Understanding of Person-Centered Dementia Care in Home Settings.

There has been a rich body of literature on informal caregivers of persons with dementia (PWD). However, little has been discussed on how to facilitate person-centered dementia care in home settings with spouses as primary caregivers. We tend to take it for granted that spouses provide person-centered care for PWD. However, being spouses of PWD and living with them for several decades does not necessarily mean that it is easier for them to provide person-centered dementia care and maintain valued and healthy relationships. The current study aimed to explore dyadic experiences of PWD and their spousal caregivers and develop a culturally and contextually-sensitive understanding of person-centered dementia care in home-based settings. A total of 20 dyads of PWD and their care partners were selected for this study. A trained qualitative interviewer conducted a one-on-one interview with each participant with dementia and their care partners separately. We adopted both conventional and directed content analyses. Our findings provide examples of care partners provide person-centered care, resulting in a profound positive impact on their wellbeing. Adaptive leadership and collaborative work emerged as a key finding in facilitating person-centered dementia care. Cultural relevancy of person-centered dementia care was also interpreted from the data. The study findings provide implications for the evolving of person-centered dementia care model in home-based settings. Findings from this study highlight the significance of facilitating person-centered dementia care in home-based settings between PWD and their primary family caregivers.

Korean Family Caregivers' Experiences With Managing Behavioral and Psychological Symptoms of Dementia: Keeping Harmony in Daily Life.

Behavioral and psychological symptoms of dementia (BPSD) are symptoms of dementia that family caregivers find difficult to manage. Competence in managing BPSD differs according to individual family caregiver. The current study investigated the competence in managing BPSD, focusing on family caregivers who were recognized as managing them well. Twenty-four Korean family caregivers (83% female, mean age = 67 years) living with persons with dementia (PWD) were interviewed. Four themes were derived from the content analysis: Entering and Looking into the World of PWD, Keeping Daily Life in Harmony With BPSD, Becoming an Expert in BPSD, and Balancing Between Caregiving and Myself. Family caregivers minimized the impact of BPSD and maintained life balance. As a result, they were able to continue a harmonious life with PWD. [Research in Gerontological Nursing, 15(3), 141-150.].

765 EFFECTIVENESS OF AROMATHERAPY IN MANAGING BEHAVIOURAL AND PSYCHOLOGICAL SYMPTOMS OF DEMENTIA: A MIXED METHODS: SYSTEMATIC REVIEW

Abstract Introduction Over 90% older persons with dementia (PWD) exhibit behavioural and psychological symptoms of dementia (BPSD) during their illness, which is the most prominent and distressing manifestation for PWD and caregivers. Aromatherapy has demonstrated its effectiveness in BPSD management in previous studies. However, previous studies and systematic reviews have shown inconsistent findings, and no review has been done on qualitative studies. The aim of this review was to identify and review the evidence from quantitative and qualitative studies of the effectiveness of aromatherapy on BPSD management, for PWD and caregivers. Methods Joanna Briggs Institute (JBI) methodology for mixed method systematic review with convergent segregated approach was followed. 28 English and Chinese databases were searched for published and unpublished studies. The titles, abstracts, and full-texts were screened by two reviewers based on pre-specified criteria, and methodological quality was assessed with JBI critical appraisal tools. Quantitative synthesis including meta-analysis by Review Manager 5.4, qualitative synthesis including meta-aggregation, and integration of both evidence were performed. Results Total 8,264 articles were retrieved. After screening, 24 studies (12 randomised controlled trials, 10 quasi-experimental studies, 2 qualitative studies) were included. Most of the studies with moderate methodological quality. Some inconsistent findings regarding the effectiveness of aromatherapy in reducing the severity of BPSD, and insufficient adherence monitoring were reported in the included studies. Significant improvement in PWD’s QoL and caregivers’ distress and burden, positive experience from the caregivers, as well as very low adverse effects (and no adverse effect for aromatherapy inhalation) to PWD were reported in some of the studies. Conclusion Aromatherapy, especially in inhalation approach, might be regarded as a potentially safe and effective strategy for BPSD management with positive effects to PWD and caregivers. More structuralised and comparable studies with sufficient sample size and adherence monitoring are needed to obtain more conclusive findings.

Interventions for Rural Caregiver Health: An Integrative Review.

Few health behavior interventions exist for rural caregivers of persons with dementia (PWD) in the United States. Of interventions that have been studied, little is known about health outcomes that are included in interventions and which interventions are most effective on health outcomes. An integrative literature review of intervention studies for rural caregiver health throughout the United States was undertaken with an emphasis on concepts related to health promotion, self-management, self-care, and/or self-efficacy. Findings from this review indicated multicomponent interventions that included self-care strategies were associated with improvements of caregiver psychosocial health outcomes of depression, burden, self-efficacy, social support, and self-rated health. Sleep problems and endurance potential were the only physical health outcomes measured. To prevent adverse physical health outcomes, interventions with attention to rural context are needed that emphasize health promotion with a focus on health behaviors and health outcome measurement in rural caregivers of PWD. [Research in Gerontological Nursing, 15(2), 101-108.].

Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden.

(1) Background: Spouse carers of persons with dementia (PwD) are particularly vulnerable to negative outcomes of care, yet research rarely focuses on their caregiving situation. This study explores factors associated with the positive value and negative impact of caregiving in spouse carers of PwD in Sweden. (2) Methods: The study was a cross-sectional questionnaire-based survey, with a convenience sample of spouse carers of PwD (n = 163). The questionnaire addressed: care situation, carer stress, health and social well-being, relationship quality and quality of support, and contained measures of positive value and negative impact of caregiving. (3) Results: Hierarchical regression models explained 63.4% variance in positive value and 63.2% variance in negative impact of caregiving. Three variables were significant in the model of positive value: mutuality, change in emotional closeness following dementia and quality of support. Six variables were significant in the model of negative impact: years in relationship, years as carer, behavioural stress, self-rated health, emotional loneliness and change in physical intimacy following dementia. (4) Conclusions: Support to spouse carers of PwD should address the carer–care-recipient relationship quality, although different aspects of the relationship should be addressed if both the positive value of caregiving is to be enhanced and the negative impact reduced.

Predicting neuropsychiatric symptoms of persons with dementia in a day care center using a facial expression recognition system.

Background: Behavioral and psychological symptoms of dementia (BPSD) affect 90% of persons with dementia (PwD), resulting in various adverse outcomes and aggravating care burdens among their caretakers. This study aimed to explore the potential of artificial intelligence-based facial expression recognition systems (FERS) in predicting BPSDs among PwD.Methods: A hybrid of human labeling and a preconstructed deep learning model was used to differentiate basic facial expressions of individuals to predict the results of Neuropsychiatric Inventory (NPI) assessments by stepwise linear regression (LR), random forest (RF) with importance ranking, and ensemble method (EM) of equal importance, while the accuracy was determined by mean absolute error (MAE) and root-mean-square error (RMSE) methods.Results: Twenty-three PwD from an adult day care center were enrolled with ≥ 11,500 FERS data series and 38 comparative NPI scores. The overall accuracy was 86% on facial expression recognition. Negative facial expressions and variance in emotional switches were important features of BPSDs. A strong positive correlation was identified in each model (EM: r = 0.834, LR: r = 0.821, RF: r = 0.798 by the patientwise method; EM: r = 0.891, LR: r = 0.870, RF: r = 0.886 by the MinimPy method), and EM exhibited the lowest MAE and RMSE.Conclusions: FERS successfully predicted the BPSD of PwD by negative emotions and the variance in emotional switches. This finding enables early detection and management of BPSDs, thus improving the quality of dementia care.