Bound in an Imbalanced Relationship: Family Caregivers and Migrant Live-In Care-Workers of Frail Older Persons in Israel.

Migrant care-workers (MCWs) are often the main caregivers for frail older persons. We examined the complex relationship between MCWs and primary family caregivers (PFCs) in Israel to better understand how MCWs and PFCs perceive the formal and informal nature of their relationship. Given the high prevalence of two-income families who are unavailable for caregiving, the relationships among MCWs, PFCs, and care-recipients warrants examination, particularly when PFCs serve as managers of care and the care-recipient has dementia. The sample of 116 MCWs and 117 PFCs included 92 MCW-PFC pairs who were part of a larger study on home care for frail older persons. A mixed-methods approach was used involving quantitative (correlations/paired t-tests) and qualitative (grounded theory framework) analyses conducted on data obtained from structured interviews. A significant correlation was found between ratings of the quality of the relationship by MCWs and PFCs, although PFCs rated it significantly more positively than MCWs. MCWs' ratings of their relationship with the PFCs were significantly correlated with their ratings of the quality of their relationship with the care-recipient. Four main thematic categories emerged from the qualitative analysis: (1) communication, (2) dependence, (3) relationship quality, and (4) triad: MCW-PFC-care-recipient. For each theme, we present perspectives of MCWs and PFCs, reflecting either "closeness" or "distance" in their relationship. The findings highlight the complexity of such relationships, with the potential for a meaningful positive bond or mistrust or abuse. The study provides a basis for testing methods for ameliorating the negative experiences described by some participants.

Who Helped Long-Term Care Facilities and Who Did Not During COVID-19? A Survey of Administrators in Israel.

Long Term Care Facility (LTCF) residents are particularly vulnerable to infection and showed increased mortality during the COVID-19 epidemic. The pandemic presented multiple new challenges for LTCFs including considering and implementing new practices to protect residents and staff, and figuring out how to minimize the adverse effects of such practices. There are, however, very few reports addressing which public and private entities helped LTCFs meet these challenges. We examined the most important needs of Israeli LTCFs as the COVID-19 pandemic developed, the extent to which their needs were addressed, and by whom, using a survey specifically designed for this study, including open- and close-ended questions. Fifty-two LTCFs participated in the study. Shortages of nursing aids and personal protective equipment were often reported, as was the need for augmented budgetary support. Charitable organizations and the Israeli Army's Home Front Command were reported to provide significantly more assistance than the Israel Ministry of Health, the regulator of LTCFs. The most common type of support provided was distribution of personal protective equipment, followed by provision of training materials or training, and help in maintaining visiting policies. Findings highlight the need for a more coordinated, systematic and comprehensive approach to assist facilities.

Predictors of Quality-of-Care Provided by Migrant Live-In Caregivers of Frail older Persons: A Cross-Sectional Study.

We examined the association between employment-related characteristics and the quality-of-care migrant live-in caregivers provide to older care-recipients. Structured interviews were conducted with 115 migrant live-in caregivers, 72 older care-recipients, and 117 relatives of care-recipients. We conducted correlations among dependent (quality-of-care), independent (quality of relationship between caregiver and informant, caregiver perception of work, and problematic employment conditions), and demographic variables, and performed a path analysis by conducting a series of multiple regressions. Quality-of-care was most highly correlated with quality of relationship between informant and caregiver. Quality of relationship was predicted by caregiver perceptions of work, which was negatively predicted by problematic employment conditions. In the relatives-based model, quality of relationship was significantly better when the care-receiver was female and the care-recipient needed more assistance with activities of daily living. The study clarifies the role of caregiver work characteristics for quality-of-care and highlights the crucial role of the relationship with the care-recipient.

Awareness of Imminent Death: Results From a Mixed Methods Study of Israeli Family Caregivers' Perceptions of Their Awareness and That of the Patients for Whom They Cared.

We studied levels of awareness of impending death in older patients and their family caregivers. Using a mixed methods approach, we interviewed 70 family caregivers in Israel. Of the caregivers, 64% reported having been aware of the impending death, 33% were unaware, and 3% uncertain. Caregivers reported their perception that 36% of patients were aware, 27% unaware, and for 37% they were uncertain about the patient's awareness. Mechanisms that increased caregivers' awareness were specific diagnosis, significant deterioration in health, preparation by a health professional, or patient preparations for death. This study clarifies processes which aid awareness, and the relationship between awareness and actual preparation for dying.

The impact of COVID-19 on long-term care facilities and their staff in Israel: Results from a mixed methods study.

AIM: We examined the impact of COVID-19 regarding organizational and management issues at Israeli long-term care facilities. BACKGROUND: Residents in facilities were very vulnerable to significant disease and mortality during COVID-19. METHODS: A survey of 52 facilities in Israel was conducted in 2020, consisting of closed- and open-ended questions. Mixed methods were used to analyze data both quantitatively and qualitatively. RESULTS: Three main effects emerged: worsened financial status of long-term-care facilities resulting from high expenditures for preventive measures and reduced revenue due to deaths and fewer resident admissions, increased workload due to decreased workforce and additional duties, and negative mental health effects on staff because of increased workload and the conflict between maintaining good clinical practice and following COVID-19 regulations. CONCLUSION: The development of government directives needs to take into account potential conflicts between the directives and quality care principles and to provide a balanced approach that assures humane care. Facilities and their staff lacked adequate pandemic-related guidance and support. IMPLICATIONS FOR NURSING MANAGEMENT: The results highlight the need to address staff shortages and training, to provide more support and clearer guidance to facilities and their staff, and to devise a framework and strategies for future health crises.

Motivation to Participate in Intergenerational Programs: A Comparison across Different Program Types and Generations.

Much research has attested to the benefits of intergenerational programs (IGPs) for older and younger participants, but there is a lack of understanding about what motivates them to participate and to persevere. We conducted structured interviews with 83 older (mean age = 77) and 96 younger (mean age = 23) participants who participated in 13 IGPs in Israel, some involving specific topics, and some providing assistance to older adults. Using a mixed-methods approach, we analyzed differences in motivation across generations and program types and compared initial and ongoing motivation to participate. We found differences regarding motivation by age group and program type: Among older participants, interest in the specific subject was a more prevalent motivation in topic-focused groups, while receiving support was more common in assistance groups. Among young persons, motivations relating to obligation, such as receipt of a financial scholarship, and the wish to help others were the most prevalent motivators. Ongoing motivation was often explained by positive intergenerational relationships and enjoyment. For older adults, offering more diverse topic-focused activities may motivate greater participation. For young adults, integrating IGPs within more and different settings, and promoting IGPs as opportunities to help others are potential motivators.

Direct and Indirect Effects of COVID-19 on Long-Term Care Residents and Their Family Members.

INTRODUCTION: The first cases of COVID-19 in Israel were reported in February 2020. Family visits were prohibited from March 10, 2020, and then allowed on a limited basis on April 20, 2020. This article examines how COVID-19 impacted long-term care residents and their family members from the perspective of long-term care facility (LTCF) administrative staff. METHODS: An online survey was sent to Israeli LTCF administrators between mid-July and mid-October 2020, resulting in 52 completed questionnaires. Quantitative analysis involved descriptive statistics using SPSS, with differences compared via t tests, ANOVA, and χ2 tests. Qualitative analysis involved thematic analysis of responses to open-ended questions. RESULTS: COVID-19 was reported to have multiple types of negative impact on residents, including direct effects on morbidity and mortality as well as indirect effects manifested as negative reactions to measures aimed at limiting infection, including isolation from relatives, decreased activities for residents, and COVID-19 testing. The impact of isolation on LTCF residents was reported as negative or very negative by over three-quarters of the respondents. Behavioral problems among residents increased in 32% of the facilities. The qualitative results suggested that adverse effects on residents and family members were partially mitigated by the use of communication technologies. DISCUSSION/CONCLUSION: The interplay of multiple factors affected LTCF residents against the backdrop of COVID-19 restrictions. The emergence of mitigating factors which provide solutions to some of the challenges has the potential of improving quality of care for LTCF residents as the pandemic continues and thereafter.

Israeli nursing home staff perspectives on challenges to quality care for residents with dementia.

This study examines nursing home employees' perspectives concerning barriers to quality care for people with dementia. Data were derived from observations of care units and interviews with forty-one employees, including chief executive officers, social workers, nurses, occupational therapists, activity workers and nursing assistants at five Israeli nursing homes. Residents' behavior was reported as challenging for staff. Physical restraints and psychotropic medication were commonly used to address behavioral challenges, while few staff acknowledged these practices as problematic. Staff complained that some co-workers were insufficiently caring and wages and overall funding were inadequate, resulting in unsatisfactory staffing levels and insufficient activities for residents. Rigid care routines failed to meet resident needs, and staff failed to notice the relationship between care practices and resident behavior. While problems were described concerning multiple aspects of care, the root causes seemed to include the need for additional funding and for greater expertise in dementia care.

Comparing Community-based Intergenerational Activities in Israel: Participants, Programs, and Perceived Outcomes.

This study investigated whether the content of different community-based intergenerational programs (IGPs) affects their perceived impact on older and younger participants. Data were collected through direct structured questionnaires administered to 84 older, and 96 younger participants, and were assessed using both quantitative and qualitative analyses. Different IGP types involved participants with differing background characteristics and were associated with different benefits and challenges. In art programs, older participants reported being more active and younger participants indicated more awareness of others, but also greater stress. Learning programs contributed to older persons' happiness, and younger persons' acquisition of new skills, but were also associated with divergent expectations between young and old, and a perception that young participants lacked commitment. Assistance programs attracted older participants with greater needs, and were associated with such benefits as alleviating older persons' loneliness, improving younger participants' satisfaction from helping, but also involved challenges pertaining to the relationship termination. Generally, older participants reported more benefits than younger persons. The results highlight the need to differentiate between IGP types, a distinction not addressed in previous studies. The combination of activity content and participant characteristics and needs may lead to different perceived program impacts.

Responses and Interventions to Delusions Experienced by Community-Dwelling Older Persons With Dementia.

We examined how family caregivers react, and what interventions they use in response to delusions exhibited by relatives with dementia in a community setting. Structured interviews were conducted with 68 family caregivers whose relatives were described as experiencing delusions based on the BEHAVE-AD or the NPI. Quantitatively, we cross-tabulated the type of response to delusion by the type of person providing the response and by the type of delusion manifested. Qualitatively, we analyzed open-ended responses to understand the types of caregivers' responses to delusions, the contextual circumstances, and the impact of the responses. Caregiver responses to delusions included "Explaining that the delusion was wrong" (34% of responses), "Trying to calm down" (27%), "Agreeing with the delusion" (13%), "Distracting" (12%), and "Ignoring" (10%). Responses including "Anger, yelling or scolding," were rare. The vast majority of reactions were by family caregivers of the persons with dementia. The relative frequency of the type of reaction tended to be consistent across delusion types. The qualitative analyses added some categories of reactions, but mostly highlighted issues to be considered when examining responses and their efficacy, including the use of multiple responses, and the manner and mood in which responses are conveyed. To cope with delusions, family caregivers develop intuitive intervention techniques. Understanding those interventions and reactions by caregivers and their relative efficacy can inform guidance programs for family caregivers. Improved support for family caregivers has the potential to positively influence the behavior of caregivers and older adults with dementia and improve their respective quality of life.

Barriers to the Success of Recreational Groups for Persons With Dementia.

BACKGROUND: This paper describes barriers to engagement in the context of group activities attended by nursing home residents with dementia. OBJECTIVE: The goal is to clarify the presence and types of barriers to group activities for persons with dementia. METHODS: Therapeutic recreation staff (TRs) who conducted the group activities, and trained research observers (ROs) independently identified barriers occurring during group activity sessions through ratings and open-ended comments, which were analyzed via a mixed-method approach. RESULTS: Barriers were related to specific participant, environmental, and group session characteristics. Most frequently noted barriers were participant-related, pertaining to apathy and challenging behavior. Noise was the most frequent environmental barrier. Overall, ROs reported more barriers than TRs, yet TRs reported the barrier of inappropriate topic more frequently than ROs. CONCLUSIONS: The study suggests that the number and specific types of barriers are associated with negative engagement outcomes. Insight into these barriers is the first step toward addressing them and minimizing their effects.

In the Eye of the Beholder: The Impact of Intergenerational Programs from the Perspectives of Their Different Stakeholders.

Since most evaluations of intergenerational programs (IGPs) focus on the perspective of a single stakeholder group concerning the benefit for themselves, we compared perceptions of multiple stakeholders: older adults, younger adults, and IGP organizers concerning the impact of IGPs on older and young participants. Using a mixed-methods approach, we collected data from thirteen community-based IGPs. The quantitative analyses included a comparison of the different stakeholder groups via ANOVAs and chi-square analyses. In order to identify the reasons for different attribution ratings among stakeholders, we conducted a qualitative analysis of the stakeholders' comments and responses to open-ended questions using a thematic analysis approach. Overall, participants rated benefits to themselves lower than attributed to them by their counterparts. Differences in ratings may be explained by differences in expectations and needs, cognitive dissonance, as well as a lack of awareness about other participants' experiences. Given the discrepancies in perception of impact, it is vital to seek input from all stakeholders in order to understand their respective needs and expectations, construct a balanced evaluation, and improve IGP processes and outcomes. Studying a single stakeholder group for project evaluation is likely to provide only one perspective, whereas including all points of view provides a more complete picture.

Processes and structures in intergenerational programs: a comparison across different types of programs.

OBJECTIVES: Given the widely acknowledged benefits of intergenerational programs (IGPs), we compared processes and structures across different IGP types and explored potential areas for improvement. DESIGN: Thirteen IGPs were classified into three types: arts, learning, and assistance programs. Data were collected through direct structured interviews and analyzed quantitatively and qualitatively. SETTING: Participants were recruited from community-based IGPs in the greater Tel Aviv area of Israel. PARTICIPANTS: Eighty-four older participants (OPs), 97 younger participants (YPs), and 21 organizers were interviewed. MEASUREMENTS: Questions included participant demographics as well as closed- and open-ended questions regarding processes based on the Impact of Intergenerational Programs Questionnaire (IIPQ). ANALYSIS: Responses to closed-ended questions were compared among IGP types and age groups using two-way ANOVAs for ordinal data, and chi-squares for nominal data. Responses to open-ended questions by OP, YP, and program organizers about potential areas for improvement were analyzed using thematic analysis. RESULTS: Processes in need of improvement were preparation and guidance, length of program participation, and monitoring of activities, which differed across IGP types and age groups. These processes were related to broader structural problems such as lack of resources, organizers' poor employment conditions, and inadequate public services for older persons in Israel. CONCLUSIONS: Our study highlights the complex relationships between IGP types, processes, and structures. IGP processes and goals can be hindered by structural variables such as insufficient funding, infrastructure, and public services for older adults.

The Rights of Persons With Dementia and Their Meanings.

Concern about the lack of human rights afforded to persons living with dementia has emerged in recent years. Although the literature addresses certain rights, it does not include a holistic framework of rights in terms of the lived experience of older persons with cognitive impairment. Inspired by the 20 rights advocated for children by physician-educator Janusz Korczak, this article analyzes his formulation of rights in the context of persons with dementia, linking them to the ethical principles of Beneficence, Autonomy, and Justice. The analysis thus provides a holistic framework for addressing the human rights of persons with dementia, and their meanings for the lived experiences of persons with dementia and their caregivers. It offers new insights into the philosophy and practice of care, with implications for dementia care research, public health policy, practice guidelines for health care professionals, and the instruction of family and other caregivers of persons with dementia.

Correction: Adequacy of Web-Based Activities as a Substitute for In-Person Activities for Older Persons During the COVID-19 Pandemic: Survey Study.

[This corrects the article DOI: 10.2196/25848.].

Adequacy of Web-Based Activities as a Substitute for In-Person Activities for Older Persons During the COVID-19 Pandemic: Survey Study.

BACKGROUND: Senior centers and other types of clubs provide activities for older adults to address boredom, social isolation, and loneliness. Due to the COVID-19 pandemic, most of these activities have been cancelled. A limited range of web-based activities have been offered as alternatives. However, the effectiveness of these web-based group activities for older adults has scarcely been researched. OBJECTIVE: We aimed to understand the extent to which web-based activities for older adults provide an adequate substitute for in-person activities. METHODS: In this telephone survey, we interviewed 105 older adults in Israel who had been offered the opportunity to participate in web-based activities after routine activities closed due to the COVID-19 pandemic. Of the total sample, 49/105 (46.7%) participated in the activities and 56/105 (53.3%) did not. We inquired about the respondents' background characteristics, satisfaction with the activities, and reasons for participation or nonparticipation. RESULTS: The respondents who participated in the web-based activities tended to be highly satisfied with at least some of them. They rated the enjoyment derived from the content of the activity as the most important motivator, followed by maintaining a routine and by enjoying the group and the presence of others. Over 50% of the participants (28/49, 57%) wished to continue with the exercise programming after the end of the COVID-19 pandemic, and 41% (20/49) wished to continue with the web-based lectures. Participants were more likely to report partaking in alternative activities than nonparticipants (P=.04). The most common reasons cited by nonparticipants were being unaware of the web-based program (24/56, 43%) despite a notification having been sent to the entire sample, lack of interest in the content (18/56, 32%), and technical issues (13/56, 23%), such as not owning or being able to fully use a computer. Both participants and nonparticipants were interested in a wide range of topics, with many being very particular about the topics they wished to access. Approximately half expressed willingness to pay for access; those who were willing to pay tended to have more years of education (P=.03). CONCLUSIONS: Our findings suggest a need for web-based activities for countering boredom and feelings of isolation. The main factors that influence the use, efficacy, and sustainability of online activities are access, motivational and need-fulfilling factors, and whether the activities are sufficiently tailored to individuals' preferences and abilities. Challenges in substituting in-person services are promoting social relationships that are currently not sufficiently incorporated into most web-based programs, accommodating a wider range of topics, and increasing the accessibility of current programs to older adults, especially those who are homebound, both during and after the COVID-19 pandemic.

Regrets of family caregivers in Israel about the end of life of deceased relatives.

Objective: We aimed to clarify the content of different types of regrets or lack of regret, and the frequency of feeling regret among family caregivers who assisted their relatives during their end of life stage.Method: Seventy primary informal caregivers in Israel were interviewed (17 spouses, 52 children, and 1 cousin) concerning their regret about the end of life of their deceased relative, including a general question about regret and questions about regret concerning life-sustaining treatments. After calculating the frequency of regrets and lack of regret, we conducted a qualitative analysis, using a thematic approach to identify themes and interpret data.Results: A majority of caregivers (63%) expressed regret and about 20% expressed ambivalence involving both regret and denial of regret. Regrets pertained to care given, suffering experienced, and the caregiver's behavior towards, and relationship with the deceased, including missing opportunities to express love and caring toward relatives. Caregivers viewed almost 30% of 75 administered life-sustaining procedures as misguided. Most regrets involved inaction, such as not communicating sufficiently, or not fighting for better care.Conclusion: This article provides a comprehensive description of EoL regrets, and helps clarify the complexity of regrets, lack of regrets, and ambivalence concerning regrets, though the study is limited to one country. Analysis suggests the need for public education concerning the EoL process, and for changes within the health care system to improve communication, to improve understanding of the needs of the terminally ill, and to provide more instruction to family caregivers to help them understand EoL.

Predictors of Migrant Live-in Care Workers' Burden/Burnout and Job Satisfaction When Caring for Frail Older Persons in Israel.

OBJECTIVES: To clarify how work characteristics affect migrant live-in care workers' burden/burnout as well as their job satisfaction. METHODS: Data from 116 migrant live-in care workers were collected in 2013-2014 in Tel Aviv and Jerusalem through structured interviews about their job satisfaction and their degree of burden/burnout. Due to the conceptual and empirical similarity (zero-order correlation and joint internal reliability), of burden and burnout, the 2 were combined into one variable. These outcome measures were examined in connection with the older person's level of disability, care workers' relationship with the older person, and their employment conditions. RESULTS: According to the regression models, work characteristics (care recipients' functional status and care workers' relationship with the care recipient) had a direct impact on burden/burnout. Employment-related variables (employment conditions and satisfaction with those conditions) had an indirect effect. A combination of work characteristics (relationship with the older person) together with the care worker's response to employment conditions (satisfaction with employment conditions) had a direct influence on the care workers' job satisfaction. Problematic employment conditions had an indirect effect. DISCUSSION: The results suggest that fostering better relationships and improving employment conditions could help reduce care workers' burden/burnout as well as improve their degree of satisfaction.

Is Pain Assessment of Community-Dwelling Persons With Advanced Dementia by Family and Paid Care Workers Feasible?

CONTEXT: The experience of pain is aggravated among older persons with advanced dementia (OPAD). It is often undetected and therefore untreated because of their limited capacity to identify and report their symptoms. Therefore, it is crucial to improve the pain identification skills of those who know and live with them. OBJECTIVES: To compare the identification of pain among OPAD between family members and paid care workers and to compare the detection of pain through the use of two common assessment tools. METHODS: This study is a cross-sectional comparison conducted between 82 dyads of informants: the family member of OPAD and the paid care worker, a total of 164 individuals. MEASUREMENTS: The study used two previously validated pain assessment tools for persons suffering from dementia: the Pain Assessment in Noncommunicative Elderly persons tool (PAINE) and Pain Assessment in Advanced Dementia tool (PAINAD), and a general impression question. RESULTS: Both family members and paid care workers were able to successfully use both tools. The correlation between family members' ratings and paid care workers' ratings was statistically significant for all the assessments. The correlations between raters were higher when family members lived with the OPAD. The correlations between PAINE and PAINAD scores were moderate and significant, both among family members and paid care workers. CONCLUSION: This study shows that it is feasible to improve the assessment and identification of pain among OPAD, through the use of validated tools by family members and paid care workers, suggesting the potential to improve quality of care and quality of life of OPAD.