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The Group Observational Measurement of Engagement (GOME) was developed to capture the impact of group recreational activities on the engagement and general wellbeing of persons with dementia. The psychometric properties of the GOME were originally described in a study of group activities conducted at one large Canadian geriatric center. Continuing this work in Israel, this article reports on further psychometric properties of the GOME based on observations of 115 persons with dementia from 10 geriatric units, of which four were senior day center units (in three institutions) and six were nursing units (representing five other institutions). Very good inter-rater reliability between research observers was found. Factor analysis suggests that the GOME's four individual-level outcomes can be combined into one indicator, the Wellbeing Index. Validity, examined via agreement between research observers and group activity leaders who were staff members in the facilities where the group activities were conducted, also showed high levels of positive correlations. The GOME provides a practical tool for assessing wellbeing in the context of group activities. It can be useful in clarifying the relative impact of process variables on participants' general wellbeing.

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BACKGROUND: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD. METHODS: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy. RESULTS: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy. CONCLUSION: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD. TRIAL REGISTRATION: ISRCTN14565552 (retrospectively registered).

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Euthanasia in the form of Voluntary Assisted Dying (VAD) is legal in all Australian States, but current eligibility criteria preclude access to people with dementia. This article discusses Australian VAD eligibility criteria that are problematic for people with dementia: (1) time until death within 12 months, (2) decision-making capacity for VAD, and (3) determination of intolerable suffering. Legislation in the Netherlands allows VAD for people with dementia. The challenges and philosophical issues raised by such cases are explored. It is proposed that the unique nature of dementia in its various forms warrants the formulation of dementia-specific VAD eligibility criteria. A case could be brought to challenge the denial of access to VAD of people with dementia on the basis that their exclusion is discriminatory and an abuse of human rights. If such a challenge was successful, it could form a common law precedent to allow people with dementia access to VAD.

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Objectives: Describe sex differences in healthcare utilization and mortality in persons with new dementia in Quebec, Canada. Methods: We conducted a repeated cohort study from 2000 to 2017 using health administrative databases. Community-dwelling persons aged 65+ with a new diagnosis of dementia were included. We measured 23 indicators of healthcare use across five care settings: ambulatory care, pharmacological care, acute hospital care, long-term care, and mortality. Clinically meaningful sex differences in age-standardized rates were determined graphically through expert consultations. Results: Women with dementia had higher rates of ambulatory care and pharmacological care, while men with dementia had higher acute hospital care, admission to long-term care, and mortality. There was no meaningful difference in visits to cognition specialists, antipsychotic prescriptions, and hospital death. Discussion: Men and women with dementia demonstrate differences in healthcare utilization and mortality. Addressing these differences will inform decision-makers, care providers and researchers and guide more equitable policy and interventions in dementia care.

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Purpose: To examine the mediating effect of attitudes towards dementia on the relationship between dementia knowledge and behaviors towards persons with dementia. Participants and Methods: A cross-sectional survey was conducted with 313 adults (age ≤ 20 years). Participants were recruited using non-probability convenience sampling from medical clinics, community centers, and supermarkets located in the Wanhua District of Taipei City. Data were collected with the following self-report questionnaires: a demographic survey, validated instruments for dementia knowledge and attitudes towards dementia (assessed using the Alzheimer's Disease Knowledge Scale and the Approaches to Dementia Questionnaire, respectively), and a researcher-developed survey on unfriendly behaviors towards persons with dementia. Results: Pearson's correlation and multiple linear regression analysis indicated that higher scores for dementia knowledge and more positive attitudes about dementia were significantly associated with lower levels of unfriendly behaviors towards persons living with dementia. Mediation analysis using a robust bootstrap test with 5000 samples indicated that attitudes toward dementia had a partial mediating effect on the relationship between dementia knowledge and unfriendly behaviors. Conclusion: Our findings suggest that increasing public awareness and knowledge about dementia could help the general population develop better attitudes towards dementia, which could subsequently help improve behaviors towards persons living with dementia.

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Due to the insidious progression of Alzheimer's disease and related dementias (ADRD), surrogate decision-makers typically make medical and long-term-care decisions for a care recipient, most often a family care partner. Unfortunately, many care recipient/care partner dyads have failed to engage in advance care planning or have lost the opportunity to do so due to the cognitive decline of the care recipient. To address this need, our team created a validated dementia-focused advance care planning tool known as the LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias). With funding from the National Alzheimer's Association and in consultation with our community advisory board, we developed a preliminary web-based intervention. This intervention integrates the LEAD Guide with self-paced educational modules that lead dyads through conversations and dementia-focused advance care planning processes. In this concept paper, we describe the aims of our funded R01 clinical trial (National Institute on Aging), where we aim to refine our preliminary web-based platform for use in a 5-month mixed-method NIH Stage-1 behavioral intervention. Using a sample of diverse community-based ADRD dyads (n = 60), we aim to: 1) describe the acceptability, usability, and feasibility of the intervention, 2) assess the initial efficacy of the intervention on the primary outcome (decision-making self-efficacy), and secondary outcomes (relationship quality, subjective well-being, anxiety) as perceived by both the care recipient and the care partner, and 3) examine advance care planning congruence as a mechanism of action. The LEAD clinical trial addresses public health challenges by guiding and supporting families through challenging advance care planning conversations, facilitating the transfer of knowledge regarding care preferences and values from the care recipient to the care partner, with the ultimate goal of improving the quality of life for both individuals with ADRD and their care partners.

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BACKGROUND: Vietnam is one of the most rapidly aging countries in the world and the likelihood that someone may have dementia rises dramatically as the population ages. Although caring for persons living with dementia is important, little is known about the circumstances under which community healthcare professionals in Vietnam provide dementia care. This study aimed to describe the practice of caring for persons with dementia among community healthcare professionals in Vietnam. METHODS: This qualitative descriptive study was conducted with 23 community healthcare professionals recruited from 10 primary healthcare centers, representing 10 of 24 districts in Ho Chi Minh City, Vietnam. Participants were physicians (n = 11), physician's assistants (n = 8) and community nurses (n = 4). Data were collected through in-depth face-to-face semi-structured interviews. Interview data were audio recorded, transcribed verbatim, and analyzed using content analysis. RESULTS: The mean age of the 23 participants was 44.6 ± 8.8 years; most were female (n = 16, 69.6%); and the mean time of working in the field of dementia care was 15.9 ± 8.4 years. Analysis of the interview data revealed five categories, which informed how care was provided: 1) Knowledge about dementia and its prevalence among older adults; 2) Identification of dementia in Vietnam; 3) Lack of attention to early diagnosis of dementia and difficulty in providing continuous care; 4) Dependence on family members for prompt and continuous care; and 5) challenges to providing dementia care. Despite having knowledge about dementia, some healthcare professionals incorrectly viewed dementia as an inevitable part of the ageing process. Participants reported that their limited training and practical experience in caring for persons with dementia caused a lack of confidence in dementia care. CONCLUSIONS: The quality of care provided to persons living with dementia was negatively impacted by the limited training of healthcare personnel. The diagnosis, treatment, and provision of supportive services to persons living with dementia and their families are substantial challenges for the Vietnamese healthcare system. It is crucial to initiate and cultivate dementia care education programs aimed at expanding curricula for physicians, physicians' assistants, and nurses.

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BACKGROUND: Approximately 50 million people worldwide are living with dementia. Social robots have been developed and tested to determine whether they improve the quality of life for persons with dementia. A new mobile social robot called LOVOT has artificial intelligence and sensor technologies built in. LOVOT, which is manufactured in Japan, has not yet been tested for use by persons with dementia. OBJECTIVE: This study aimed to explore how the social robot LOVOT interacts with persons with dementia and how health care professionals experience working with LOVOT in their interaction with persons with dementia. METHODS: The study was carried out at 3 nursing homes in Denmark, all with specialized units for persons with dementia. The interaction between the persons with dementia and LOVOT was tested in both individual sessions for 4 weeks and group sessions for 12 weeks. A total of 42 persons were included in the study, of which 12 were allocated to the individual sessions. A triangulation of data collection techniques was used: the World Health Organization-5 questionnaire, face scale, participant observation, and semistructured focus group interviews with health care professionals (n=3). RESULTS: There were no clinically significant changes in the well-being of the persons with dementia followed in the individual or group interaction sessions over time. The results from the face scale showed that in both the individual and group sessions, persons with dementia tended to express more positive facial expressions after the sessions. Findings on how persons with dementia experienced their interaction with LOVOT can be stated in terms of the following themes: LOVOT opens up communication and interaction; provides entertainment; creates a breathing space; is accepted and creates joy; induces feelings of care; can create an overstimulation of feelings; is not accepted; is perceived as an animal; is perceived as being nondemanding; and prevents touch deprivation. Findings regarding the health care professionals' experiences using LOVOT were as follows: the artificial behavior seems natural; and it is a communication tool that can stimulate, create feelings of security, and open up communication. Our findings indicate that the social robot is a tool that can be used in interactions with persons with dementia. CONCLUSIONS: The LOVOT robot is the next generation of social robots with advanced artificial intelligence. The vast majority of persons with dementia accepted the social robot LOVOT. LOVOT had positive effects, opened up communication, and facilitated interpersonal interaction. Although LOVOT did not create noticeable effects on social well-being, it gave individual persons a respite from everyday life. Some residents were overstimulated by emotions after interacting with LOVOT. Health care professionals accepted the social robot and view LOVOT as a new tool in the work with persons with dementia.

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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.

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PURPOSE: Interventions delivered using telehealth modalities are becoming standard practice with patient populations around the world, partly because of innovation necessitated by the COVID-19 pandemic and partly due to improved infrastructure and comfort of providers, patients, and families, through technology. Though increasingly utilized, the effectiveness of telehealth interventions with families with dementia remains unclear. This gives rise to the need for investigation to develop telehealth interventions that are evidence based and not merely convenient tools. This current study is designed to systematically examine the impact and effectiveness of telehealth-delivered psychoeducational and behavioral interventions among persons with dementia and their caregivers. DESIGN: The design combines systematic review and meta-analysis. METHODS: A total of eight databases were electronically accessed and searched as of November 16, 2021. Experimental studies identifying the results of telehealth interventions for persons with dementia and associated caregivers published in English have been reviewed in this study. Standardized mean differences (SMD) offering 95% confidence intervals (CI) were developed to pool the effect size using a random effects model (in this case, Stata 16.0). The Revised Cochrane Risk-of-Bias Tool for Randomized Trials (RoB-2) was used to analyze the study's methodological soundness. FINDINGS: Nineteen cases met the eligibility criteria (including 1379 persons with dementia and 1339 caregivers). Overall, telehealth interventions demonstrated effects in the expected directions on depression (SMD -0.63; 95% degree of confidence intervals (CI) -0.88 to -0.38, p < 0.001); and caregivers' perceived competency (SMD 0.27; 95% CI -0.05 to 0.50, p = 0.02). There were, however, no statistically significant effects observed on cognitive function or multiple aspects of quality of life for subjects. CONCLUSIONS: Telehealth interventions appear to effect a reduction in depression among persons diagnosed with dementia while improving the perceived competency of caregivers. CLINICAL RELEVANCE: The study's results could be used as evidence of the effectiveness of using telehealth for persons with dementia and their caregivers, including contextualizing where they are used (i.e., long-term care facilities, private homes, etc.), understanding the mechanisms in play (including intervention delivery and systems), and isolating and identifying mediating influences.

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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.

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As patient autonomy expands, a highly controversial issue has emerged. Should the advance directives (ADs) of refusing life-saving treatments or requesting euthanasia of persons with dementia (PWDs) who express changed minds or are often in a happy state be fulfilled? There are two autonomy-related positions. The mainstream position in philosophical discussions supports the priority of ADs based on precedent autonomy. Buchanan and Brock, and Dworkin represent this view. The other position supports the priority of PWDs' current wishes based on minimal autonomy represented by Jaworska. By rethinking the theoretical and practical challenges of the two positions and their arguments respectively, the paper concludes that in such a scenario, the priority of ADs is morally indefensible, and it is also challenging to establish minimal autonomy defend the moral priority of PWDs' current wishes. For PWDs whose past values, beliefs, and preferences fade away but who retain apparent intrinsic sentience of well-being, a modified defined quality-of-life (QoL) approach serves as another reasonable basis in their medical decision-making, and the ADs and the QoL should be further merged to reduce the uncertainty of the grey zone.

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OBJECTIVE: To evaluate racial differences in healthcare utilization and caregiver burden in a culturally diverse population of older adults with dementia. METHOD: One hundred and thirty-three dyads (person with dementia, PWD and caregiver, CG), with at least one emergency department (ED) visit or hospitalization 12 months prior, were enrolled. Independent sample t-tests and chi-squared analyses were performed to compare racial groups on healthcare utilization and CG burden. Mann-Whitney U test was used for item-level analyses, principal component analysis was used to examine relationships among outcomes, and regressions were used to identify the relationship between race and potential covariates. RESULTS: PWD sample mean age was 79 years, predominantly female, and with high school education. Racial distribution was 65% White and 35% Black. CG sample mean age was 64 years, predominantly female, with more than 12 years of education. No differences were found for age or dementia severity across racial groups. Black PWD experienced more ED and ambulance utilization when compared to White counterparts. Non-emergency hospitalization rates were higher for White PWD. No significant differences were found by race for CG burden total score; however, item-level analysis suggested more anger, reduced social life, uncertainty, and inadequacy in White CGs. Regressions demonstrated a positive relationship between Black race and adult-child CGs with increased ED visits, while dyad educational attainment was associated with hospitalizations independent of race. CONCLUSIONS: Healthcare utilization disparities extend to older adults with dementia diagnoses. Our findings suggest that culturally tailored interventions may be appropriate. Future research is encouraged to explore the effect of other covariates.

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This study's purpose was to determine the feasibility of a nurse coached walking intervention for informal caregivers of persons with dementia. Participants were randomly assigned to a nurse coached intervention or a control group. Five male and 27 female caregivers (n = 32) participated. Measures included steps, walked well-being, and perceived stress. For steps walked, each group experienced a statistical difference (p = .01 control; p = .02 intervention) and large effect size (0.90). Neither group had a statistical difference in well-being (p = .38 control; p = .08 intervention) or perceived stress (p = .56 control; p = .18 intervention). The intervention group achieved a large effect size in well-being (1.38) and moderate effect size in perceived stress (0.51). A 0.94 pedometer adherence, self-reported user ease with technology and 100% retention rate support feasibility. Many participants described feelings of loneliness and grief, but reported the pedometer motivated them to walk.

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PURPOSE: Young onset dementias (YOD) - typically defined by symptom onset before age 65 - are frequently overlooked in medical and community settings. Persons with YOD and their spouses face logistical and emotional challenges on their journey to a diagnosis (e.g. uncertainty about symptoms, lack of medical knowledge, emotional distress). An in-depth understanding of couples' experiences before and immediately following a YOD diagnosis is warranted to inform early psychosocial services for couples. METHODS: We utilized dyadic qualitative semi-structured interviews (N = 23) to better understand the nuances of couples' pre-diagnostic and diagnostic experiences with YOD. We used a hybrid of deductive and inductive analytic strategies to identify couple-level themes. RESULTS: Fifteen couple-level themes were extracted within four domains: (1) early indicators of symptoms, (2) obtaining a diagnosis, (3) experiences with health care providers, and (4) emotional reactions to the diagnosis. Couples expressed difficulties communicating about early symptoms, receiving accurate and timely diagnostic information, and managing multiple emotions. They described the value of working together to manage care, gain information, establish positive relationships with providers, and promote adjustment. CONCLUSION: Findings highlight the shared experiences of couples during the early stages of YOD, including the importance of strong communication with each other and providers. Early and accessible psychosocial services that help couples cope with and communicate about individual and shared stressors are warranted.

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BACKGROUND AND OBJECTIVES: Assisted living (AL) residents with dementia commonly exhibit behavioral expressions (BEs), yet no study has examined how AL staff perceive and respond to BEs in terms of the "ABC" model of antecedents, behaviors, and consequences, or how perceptions relate to organizational characteristics. Understanding staff perceptions may inform interventions. RESEARCH DESIGN AND METHODS: A convergent, mixed methods design was used in a study of health care supervisors from 250 AL communities in 7 states who reported 366 cases of resident BEs (one successful and one unsuccessful case). Qualitative analysis identified antecedents, BEs, staff responses, resident outcomes, and disposition (aging in place or discharge). Content analysis identified themes and compared case types. Descriptive statistics examined organizational characteristics associated with identifying antecedents. RESULTS: One quarter of cases recognized antecedents; slightly more were identified in successful (28%) compared to unsuccessful cases (20%); staff in dementia-only and smaller communities identified antecedents more often. Combativeness and anxiety were the most frequently reported BEs. The majority of both types of cases reported staff responses. Medication management was enacted as a response in 40% of cases compared to psychiatric assessment in 33% of cases. DISCUSSION AND IMPLICATIONS: Staff training is indicated to increase AL staff recognition of antecedents; doing so might reduce the use of antipsychotic medications. Psychiatric assessment plays an important role in dementia care in AL and warrants further examination. Results could be helpful for applied behavioral researchers interested in developing ways to improve the identification of antecedents of BEs of persons with dementia.

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BACKGROUND: Arts-based programs can counter the dominant narrative of loss associated with dementia, in part through fostering expressions of agency. This study uses social science theories of interaction between structure and agency to examine how an arts-based movement program, entitled Mouvement de passage, supports agency among individuals with dementia. METHODS: Ethnographic methods were used to trace how participants enact agency within the structure of the movement program. The program's sessions were video recorded and iteratively analyzed. RESULTS: Participants expressed their agency in three ways: 1) transforming the exercise's structure according to individual interests and desires; 2) resisting the exercise's structure; and 3) improvising movements collectively. CONCLUSIONS: The movements of individuals with dementia were shaped by both program structure and individual/collective expressions of agency. The design of Mouvement de passage, based on open-ended structures and voluntary participation, provides a template for developing interventions that foster agency among these persons.

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Social-distancing guidelines from the COVID-19 pandemic have potential to compound morbidity in persons with dementia (PwD) and increase caregiver burden. This qualitative study utilized semi-structured interviews between August-November 2020 to explore the impact of COVID-19 on PwD and caregivers. Conventional qualitative content analysis was used. Inter-coder reliability was confirmed using the kappa coefficient. Twenty-five interviews were completed with four themes emerging: disruption of socialization, fear and risk mitigation, coping strategies, and caregiver burden. Participants described how lack of socialization and confinement led to feelings of loneliness, depression, and worsening memory problems. Caregivers reported increased burden and heightened feelings of responsibility for their loved one. Increased isolation imposed by the pandemic has a detrimental impact on PwD. Further work is needed to develop interventions to support PwD and other cognitive impairments and caregivers during the pandemic and when in-person socialization is not possible.

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One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015-2018 Behavioral Risk Factor Surveillance System data (N = 10,602). We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient's major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregivers for persons without dementia. After adjusting for sociodemographic and caregiving characteristics, the prevalence of fair/poor health, frequent mental distress, and chronic conditions were similar across types of caregivers. Although no differences in caregiver's physical and mental health by care recipient's dementia status were found, we should underscore the importance of maintaining Baby Boomer caregivers' health and well-being.

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BACKGROUND: Person-centred care (PCC) is synonymous with best practice in the care of persons with dementia. However, the research focus has been in long-term care settings with less attention in acute hospitals. We aimed to study the perspectives and experiences of nurses implementing PCC in an acute hospital dementia unit (Care for Acute Mentally Infirm Elders [CAMIE]). METHOD: This was an exploratory qualitative study involving individual, face-to-face, semi-structured in-depth interviews. A purposive sample of 10 nurses participated in the interview. We employed an inductive thematic analysis approach to analyse the qualitative data. RESULTS: The findings highlighted the positive experiences, for example, meaningful connection with patients and the challenges, for example, managing challenging behaviour in providing PCC. The initial challenges were due to a lack of prior knowledge and experience. Through formal and informal learning, the nurses built confidence and competence, and also provided support to one other. They emphasized the importance of teamwork and camaraderie in the CAMIE team but raised concerns about the negative perceptions of non-CAMIE nurses on the value of their work. CONCLUSION: Despite the challenges, adequate knowledge and robust organizational level support are the key support for nurses to embrace PCC as their care ethos in the acute care setting.

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