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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.].

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.

The impact of environmental factors on persons with dementia attending recreational groups.

OBJECTIVES: The Comprehensive Process Model of Group Engagement posits that personal factors (eg, cognitive function), stimulus factors (eg, group activity content and group size), and environmental factors (eg, light and noise) impact the response to group activities. This paper reports the impact of environmental and group characteristics on engagement, mood, and sleepiness of persons with dementia attending group activities. METHODS/DESIGN: The sample included 69 nursing home residents. Environmental contexts of activities included time of day, location, noise, light, and temperature. Outcome variables captured engagement, mood, and sleepiness, observed during 20 group activity sessions. Mixed model analyses were used to examine the impact of environmental and group attributes on the outcome variables. RESULTS: Background noise and time of day significantly affected outcome variables after controlling for participants' cognitive functioning and group topic. Background noise was related with decreased engagement and increased sleepiness. Activities conducted before noon were associated with increased sleepiness. Group size did not affect the outcome variables. There was little variation concerning temperature and light. CONCLUSIONS: These findings have implications for architectural and ongoing planning. The methodology presents a model for continuous quality improvement. The main components of the Comprehensive Process Model of Group Engagement significantly impacted group activity engagement.

The meanings of loneliness for older persons.

Objectives: We identify and describe the meanings of loneliness among older persons, the kinds of relationships they are seeking in order to alleviate it, and the barriers they face in developing these connections.Method: Study participants were 35 older persons between the ages of 66 and 92 years from Tel Aviv, Israel, who participated in an intervention which involved group activities and individual meetings. The transcriptions of the individual meetings in which participants described their loneliness and explored potential solutions formed the data for thematic analysis.Results: Participants experienced loneliness in highly individualized ways. They were more likely to experience it when alone in the evening and on weekends, and when distracting activities were not available. While most sought companionship, many focused on a specific type of relationship, ranging from instrumental companionships to intimate and spousal relationships. Participants often had particular preferences about the demographic and socioeconomic characteristics they desired in a companion. Barriers to alleviating loneliness included cognitive sets, social skills deficits, rejection of others, technological illiteracy, and physical, sensory, and cognitive limitations. External factors included economic hardship and community programming which failed to promote socialization.Conclusion: New approaches are needed to counter and prevent loneliness among older persons by addressing the types of particular desires raised in our findings, as well as the psychological barriers to realizing them. Public policy and societal initiatives should tackle external barriers through programming which promotes social engagement and the development of other innovative strategies.

Family caregiver perceptions of end of life in persons with and without dementia.

BACKGROUND: We compare the End of Life [EoL] period, the period of decline to death, for persons with dementia [PwD] to those without dementia, examining the duration and number of stages, and their precipitating events. METHODS: In this cross-sectional study, 70 primary caregivers of decedents were interviewed. Frequencies were compared using the McNemar statistical test. RESULTS: PwD were more likely to be female and older, compared to those without dementia. For PwD, the reported duration of the EoL period was significantly longer, involved more stages, and included a longer first stage. Precipitating events for EoL were more likely to include cognitive decline for PwD, but for those without, more likely to involve a new medical diagnosis or decline in health status. DISCUSSION: End of Life as the final stage of development differs significantly between the two populations in length and other parameters. This has considerable implications for the experiences of PwD.

Do Reports on Personal Preferences of Persons with Dementia Predict Their Responses to Group Activities?

BACKGROUND: We examine the utility of individualizing activities for persons with dementia (PwD) on the basis of congruence with preferences. Previous studies demonstrated only limited evidence of individualization of activity content to improve response, tended not to consider group activities, or were inconclusive. METHODS: Participants were 90 PwD residing in a nursing home or attending a day center. After family and staff caregivers rated preferences for music, exercise, reading, brain games, and baking, group activities were conducted, and the impact on mood and engagement was monitored. We tested whether participants showed more engagement and better mood when group activities were related to topics they liked, in comparison to topics they did not like (within-person analysis), and whether persons who liked certain topics showed better outcomes in comparison to persons who did not like those topics (between-person analyses). RESULTS: Within-person analysis found a relationship between the report of liking the topic and engagement and mood during the group activity, confirming the benefit of individualizing activities to persons' preferences. Between-person analyses were statistically significant only when based on staff preference ratings. CONCLUSION: Despite the fact that each topic represents a wide range of possible activities, individualizing group activities based on participants' preferences can optimize the impact.

Non-pharmacological interventions for persons with dementia: what are they and how should they be studied?

The publication of four papers concerning non-pharmacological interventions for persons with dementia heralds progress in the science of dementia care. The four papers are very diverse in focus and methodology, and include a study of the impact of a visual arts program on quality of life, communication, and well-being by Windle et al. (2017); an overview of systematic reviews of pharmacological and non-pharmacological interventions for the treatment of behavioral and psychological symptoms of dementia by Dyer et al. (2017); a systematic review of the efficacy of intervention in people with Lewy body dementia by Morrin et al. (2017); and a protocol of the Behavior and Evolution of Young Onset Dementia part two (BEYOND-II) study, an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia by van Duinen-van den IJssel et al. (2017).

Quality of care for frail older persons in a homecare setting: what is it and how can it be measured?

ABSTRACTBackground:As more older persons opt to age in place, there is a growing trend to hire migrant workers as live-in caregivers to care for them. This raises the need to examine the quality of care they receive within this unique care setting. The objective of this pilot study was to establish the components of quality of care as provided by migrant live-in caregivers. METHODS: We interviewed a convenience sample of older persons cared for by migrant live-in caregivers and their relatives. When relatives reported that older persons could not be interviewed due to advanced dementia, only relatives were interviewed. Overall, 72 older persons and 117 relatives were interviewed. We used the Quality of Care Questionnaire (QuCQ) developed for this study to examine the main components of quality of care in this population. RESULTS: Factor analysis using older persons' data revealed two factors. In the first factor, "caretaking," items concerning provision of prompt care exhibited the highest loadings. Items measuring interpersonal aspects of the care dynamic had the highest loadings in the second factor, thus labeled "relationship." The factor analysis based on relatives' data yielded similarities and differences with the one based on older persons' data. Yet, there were significant correlations between relative and older persons' responses when using the older persons' factor structure. CONCLUSIONS: According to older persons and relatives, quality of care depends on the extent to which older persons' care-related needs, as well as social ones, are addressed. Appropriate evaluation of quality of care in the live-in setting is important for its improvement.

The right to mourn in dementia: To tell or not to tell when someone dies in dementia day care.

People with dementia (PwD) attending dementia day care often experience the death of others. Little research exists regarding whether PwD should be informed of the death, and if so, how? In this qualitative research, the authors explored, through semistructured interviews, the beliefs and practices of 52 staff members of adult day centers for PwD about these issues. Themes that emerged are that many staff members feel their clients have emotional capacity to mourn, despite their cognitive impairments. There are many different ways to tell PwD about the death of others. Each case should be judged individually. Eighty percent of staff feels sad when a group member dies and 92% desires more training on how to enable their clients to grieve. Research is needed on mourning and PwD, staff training, and ways to help staff with the burden of their own grieving. These methods may improve quality of care and decrease staff burnout.