Family Caregivers Of Older Persons Research Articles

Comparison survey on family caregivers of older persons in Japan and Thailand.

While rapid population ageing is occurring worldwide, its speed is especially prominent in Asian countries. In Asia, cultural diversity might significantly affect care burden; however, few studies have investigated the differences in care burden, and mental, physical and social conditions among Asian countries. This study aimed to clarify the situations of and differences in family caregivers (FCs) of older persons in Japan and Thailand, and evaluate the factors associated with care burden in both countries. A cross-national survey of 217 in-home FCs was conducted in Japan and Thailand and mainly included items regarding care burden and psychosocial conditions. Differences between the two countries were obtained, and the factors associated with care burden were analysed by multiple regression analyses. The FCs' and care receivers' mean ages (64.8 ± 11.1 and 84.8 ± 8.6 years, respectively) in Japan were significantly higher than the mean ages (49.1 ± 13.3 and 77.1 ± 9.5 years) in Thailand. In Japan, FCs had more severe care burden, loneliness, and stress compared to those in Thailand. In Thailand, FCs had more social connections and informal support than those in Japan. The factors associated with care burden were different in each country; thus, severe stress, low emotional care preparation, and low willingness to continue care at home were significantly associated with severe care burden in Japan, whereas poor relationships with care receivers, few social connections, low confidence in providing care, low emotional care preparation, and lack of informal support were significantly associated with severe care burden in Thailand. Despite there being a long-term care insurance system in Japan, which is absent in Thailand, care burden and psychosocial conditions of FCs might be worse in Japan. There was a clear difference in the factors associated with care burden between Japan and Thailand.

ALIGNING ASSESSMENTS AND MEASURES OF CAREGIVER NEGLECT WITH INTERVENTION DEVELOPMENT: NEW INSIGHTS AND DIRECTIONS

Abstract As one of the most common forms of elder mistreatment, caregiver neglect is associated with significant morbidity and mortality. The unique stresses, demands, and challenges associated with family caregiving likely increases the risk of neglect. Addressing the multifaceted nature of caregiver neglect in diverse family caregivers of older persons necessitates alignment of meaningful assessments and methodologies with evidence-based intervention development. Gaps in knowledge that urgently need filling include refining conceptual and operational definitions of caregiver neglect, validating novel measurement approaches, and identifying effective caregiver-centered study engagement and recruitment strategies. To address these gaps, this symposium will draw upon insights from four caregiver neglect studies across community and clinical settings. Dr. David Hancock will characterize prevalence and correlates of caregiver neglect using unmet activities of daily living needs in a sample of dementia patients and their caregivers. Dr. E-Shien Chang will test the impact of varying operational definitions of caregiver neglect on prevalence estimates and associated risk and protective factors. Dr. Tony Rosen will present a novel, validated caregiver neglect severity measure to more accurately assess the impact of neglect on older persons’ health and quality of life outcomes. Dr. Farida Ejaz will highlight challenges and successes in identifying and involving family caregivers at risk of neglectful caregiving behaviors to inform intervention. Finally, Dr. Alan Stevens, as policy and advocacy expert for family caregivers, will provide summative comments and recommendations for policy and practice changes to better reduce risk of neglect and improve support for family caregivers.

Exploring the positive aspects of caregiving among family caregivers of the older adults in India.

Caregiving is a committed role that focuses on providing the required support and care to a care receiver who is either ill, disabled, or dependent to the extent that they are incapable of independent functioning. The topic of caregiving has been extensively studied worldwide, mainly focused on the negative aspects of caregiving, like caregiver stress, burden, role conflicts, and burnout among caregivers. However, limited efforts have been made to understand the positive aspects of caregiving among informal caregivers who spend most of their time in this unpaid role. The present study addresses this concern by exploring the positive aspects of caregiving among family caregivers of older persons in India. This is a qualitative study, which was conducted, using the existential-phenomenological approach. In this study, a purposive sampling technique was used, and a total of a 100 family caregivers participated from four cities in India, namely Prayagraj, Pune, Visakhapatnam, and Guwahati. Twenty-five family caregivers between the age of 30-50 years participated from each of these four cities. The data was collected using six semi-structured interview questions on positive aspects of caregiving based on the lived experiences of caregivers. The interview schedule was developed based on the PERMA model and finalized after the pilot study. Each interview took 30-50 min and was recorded and transcribed. The data was analyzed using thematic analysis. Some commonalities and differences were observed in the responses given by family caregivers from the four cities. Four major themes that emerged for the "Nature of positive caregiving" among participants from all four cities are "Caregiver's attitude," "Care and compassion," "Roles and responsibilities," and "Beliefs and values." Four significant themes for the "Factors contributing to positive caregiving" are "Meaningfulness in life," "Sense of belongingness," "Personal growth," and "Empathetic understanding." Based on the study's findings, it can be said that the themes were associated with the PERMA model. Positive caregiving is an important indicator of caregivers' and care receivers' well-being. The findings have implications for planning some action research, training, and counseling programs for promoting positive aspects of caregiving among informal caregivers.

Implicit and Explicit Dehumanization of Older Family Members: Novel Determinants of Elder Abuse Proclivity.

Elder abuse affects one in six older persons globally. Three limitations impede progress in prevention: most research is victim- rather than perpetrator-based; the reliance on explicit, self-reported factors; and failure to account for psychological factors, such as dehumanization, that motivate abuse. The current study addressed these gaps by examining whether implicit and explicit dehumanization of t could explain elder abuse proclivity. In a web-based survey of 585 family caregivers of older persons, dehumanization was found to be prevalent with 51% of the caregivers implicitly and 31% explicitly dehumanizing older persons. As predicted, implicit and explicit dehumanization contributed to elder abuse proclivity (OR = 1.23, 95% CI = 1.02-1.50, p = .03) and (OR = 1.26, 95% CI = 1.05-1.51, p = .01), respectively, after adjusting for relevant covariates including caregiver burden, and caregivers' and care-recipients' health. Developing caregiver-based interventions to humanize older persons may complement ongoing efforts in reducing elder abuse.

An Outpatient-Based Training Program Improves Family Caregivers' Preparedness in Caring for Persons With Mild Cognitive Impairment: A Randomized Controlled Trial

Little is known regarding the effects of training programs on family caregivers of older persons with mild cognitive impairment because of the significant differences in outcome variables measured in the various studies in the literature. This study was designed to examine the effects of an outpatient-based caregiver training program on the preparedness, health-related quality of life, and depressive symptoms of participants responsible for caring for older persons with mild cognitive impairment. A randomized clinical trial was implemented. Of the 54 family caregiver participants who provided complete and valid data, 28 and 26 were assigned to the experimental and control groups, respectively. The experimental group participated in a researcher-developed training program that provided information on mild cognitive impairment, strategies for maintaining and promoting cognitive function in persons with mild cognitive impairment, managing their own and their care recipients' healthcare, and managing their own emotional support and stress. Outcomes (caregiver preparedness, health-related quality of life, and depressive symptoms) were assessed before the start of the training program (baseline) and at 1, 3, and 6 months after completion of the program. After controlling for baseline cognitive function of the care recipients and of caregiver preparedness, the experimental group was shown to be significantly less prepared than the control group at baseline (β = -1.41, p = .031) and better prepared than the control group at all three posttests (group differences: 1.3, 1.53, and 4.24, respectively), with the difference at the third posttest (6 months) reaching statistical significance (p = .008). No impact of the intervention on caregiver depressive symptoms or health-related quality of life was found at posttest. The training intervention in this study was found to increase the perceived preparedness of the family caregiver participants to handle various aspects of providing care to persons with mild cognitive impairment. However, no changes were found in depressive symptoms or health-related quality of life.

Typology of family caregivers of older persons: A latent profile analysis using elder mistreatment risk and protective factors

ABSTRACT This study sought to identify subpopulations of caregivers of older persons based on their profiles of individual characteristics and caregiving contexts and aimed at examining the associations between caregiver profiles and elder mistreatment. A convenient sample of 600 adult caregivers of community-dwelling older people in Hong Kong participated. Results of latent profile analysis support a typology of 3 distinctive caregiver profiles: (a) non-vulnerable caregivers; (b) isolated, vulnerable caregivers; and (c) traumatized, vulnerable caregivers. Isolated and traumatized caregivers reported greater risk factors related to elder mistreatment: They had higher levels of caregiver stress and burden, lower levels of social support and resilience, greater neurotic personality orientation and problematic gambling behavior, and more severe childhood traumatic experiences. The two groups also display significantly higher level of abusive behaviors than non-vulnerable caregivers.

Burden, satisfaction caregiving, and family relations in informal caregivers of older adults.

Family caregivers of older persons devote much of their time and energy to caring for another person. This exposure may burden caregivers and compromise their health and quality of life. To investigate the relationship between burden, sociodemographic, caregiving, and health characteristics of informal caregivers of dependent older adults. Cross-sectional and analytical study carried out in Palmas, Tocantins, Brazil, with 52 informal caregivers of older persons who need full-time help for basic living activities. Caregivers' burden was assessed by Zarit Burden Interview (ZBI). Data were analyzed using a T-test, Pearson's correlation, and Multiple Linear Regression. The ZBI mean score of caregivers was 26.3 points (SD = 14.6; min = 0; max = 68). Burden scores were higher among caregivers who did not receive help from other people in care (p = 0.016), reported family dysfunction (p = 0.001), and had depression symptoms (p = 0.007). A correlation was found between the scores of burdens and satisfaction with care (r = 0.76; p < 0.001) and perceived material support (r = -0.30; p = 0.40). Satisfaction with care (β: 0.61; p < 0.001) and family dysfunction (β: 8.07; p = 0.033) were significantly associated with the burden score. Caregivers with dysfunctional families and satisfaction with the care presented the highest-burden scores. The findings reveal the need for strategies to facilitate mediation and reduce caregiver burden by strengthening the family network support or providing professional assistance.

USE OF DIGITAL TECHNOLOGY SOLUTIONS TO SUPPORT CAREGIVING BY FAMILY CAREGIVERS OF OLDER ADULTS

Abstract Caregiving-relevant information and services are increasingly available online. Greater understanding of the extent and purpose of their use by family caregivers of older adults and specific caregiver sub-groups that are more or less likely to use them can inform both policies related to and the content of such solutions. We investigated the extent to which family caregivers of older persons in Singapore use digital technology solutions such as the internet and apps, and the purposes for which they use them. Information on digital device use was collected from 278 caregivers. Of them, 139 caregivers gave detailed information on how they had used the internet or apps to support caregiving in the last six months. Most (89%) caregivers used digital devices regularly (mostly smartphones (87%)). Digital device use was associated with caregiver age, ethnicity and education. Common generic online activities included sending instant messages (77%) and surfing websites (64%). While 54% had used the internet to support caregiving (most common purpose: search for information on care-recipient’s health conditions), 43% had used apps to do so (most common purpose: coordinate care with family members or other caregivers). Such use was associated with caregiver age, education and care-recipient health. While use of digital devices and generic online activities are common among caregivers, their use of the internet or apps to support caregiving is less common. Information-seeking and coordination are indicative of avenues in which digital technology solutions can complement ‘physical’ channels of communication and support with and for caregivers, and be further expanded.

Impact of a smart‐clothes home nursing program in Taiwan during heightened COVID‐19 restrictions

AbstractBackgroundThe COVID‐19 pandemic has required restrictions of daily activities, which has been found to impact the lives of persons with dementia and their family caregivers, who have multiple care demands. The lack of relevant studies in Taiwan emphasized the need to explore the experiences of family caregivers of older persons with dementia faced with the intensified restrictions to control COVID‐19, and the impact of the availability of a smart‐clothes home nursing program.MethodThis qualitative study used semi‐structured interviews with family caregivers of older persons with dementia. Participants were recruited from dementia clinics of a medical center in northern Taiwan from a subset sample of a larger study on smart clothes assisted home nursing care. A total of 12 family caregivers who participated in the original study were interviewed during the follow‐up period; seven were caregivers of a person with dementia wearing a smart vest, which transmitted information to a home care nurse. Interviews were conducted by telephone because the conditions of the pandemic prevented face‐to‐face interviews. Recorded interviews were transcribed and analyzed using content analysis.ResultInterview data showed family caregivers’ felt the care recipient’s health was compromised and functional conditions intensified as Covid‐19‐related pandemic restrictions increased. Specific concerns included a lack social interactions, decreased daily activity levels, loss of interest and lack of motivation for activities, increased mood and behavioral problems, a decline in physical function and an increase in health problems. Family caregivers were also impacted by these restrictions, with significant increases in severity of caregiver role strain, including feeling trapped, a lack of in‐home support, profound powerlessness, and worries about the person with dementia contracting the coronavirus. The smart‐clothes assisted home nursing care program offered supplementary support to family caregivers by providing on‐time interactions, helping them manage health problems, enhancing predictability of the care recipient’s behaviors, and providing caregivers with emotional support.ConclusionThe findings of this study support alternative care such as implementation of technology‐assisted home health services to meet caregiver needs to facilitate family caregiving of persons with dementia during the necessary restrictions in activities during the COVID‐19 pandemic.

Smart clothes-assisted home-nursing care program for family caregivers of older persons with dementia and hip fracture: a mixed-methods study

BackgroundThe purpose of this preliminary study was to explore whether a smart clothes-assisted home-nursing care program could benefit family caregivers and their care recipients.MethodsFamily caregivers in charge of a care recipient’s living situation participated in this convergent parallel, mixed methods study. We recruited older persons with dementia (n = 7) and those discharged following hip-fracture surgery (n = 6) from neurological clinics and surgical wards of a medical center, respectively, along with their family caregivers: three spouses, eight sons, one daughter, and one daughter-in-law. Care recipients were asked to wear a smart vest at least 4 days/week for 6 months, which contained a coin-size monitor hidden in an inner pocket. Sensors installed in bedrooms and living areas received signals from the smart clothing, which were transmitted to a mobile phone app of homecare nurses, who provided caregivers with transmitted information regarding activities, emergency situations and suggestions for caregiving activities. Outcomes included changes from baseline in caregivers’ preparedness and depressive symptoms collected at 1- and 3-months, which were analyzed with Friedman’s non-parametric test of repeated measures with post-hoc analysis. Transcripts of face-to-face semi-structured interview data about caregivers’ experiences were analyzed to identify descriptive, interpretative, and pattern codes.ResultsPreparedness did not change from baseline at either 1- or 3-months for family caregivers of persons with dementia. However, depressive symptoms decreased significantly at 1-month and 3-months compared with baseline, but not between 1-months and 3-months. Analysis of the interview data revealed the smart clothes program increased family caregivers’ knowledge of the care recipient’s situation and condition, informed healthcare providers of the care recipient’s physical health and cognitive status, helped homecare nurses provide timely interventions, balanced the care recipient’s exercise and safety, motivated recipients to exercise, helped family caregivers balance work and caregiving, and provided guidance for caregiving activities.ConclusionsExperiences with the smart clothes-assisted home-nursing care program directly benefited family caregivers, which provided indirect benefits to the care recipients due to the timely interventions and caregiving guidance from homecare nurses. These benefits suggest a smart-clothes-assisted program might be beneficial for all family caregivers.

Family caregivers for older persons with dementia offer recommendations to current caregivers: a qualitative investigation.

Family members who care for older adults with dementia encounter significant difficulties across many domains. There is limited research in this area; thus, the aim here is to share the actual experiences of 30 family caregivers to other family caregivers and to show how these experiences can provide help and recommendations. This qualitative study of 30 family caregivers of family members aged 65 and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period for data collection and content analysis to understand the data. The study asked what they learned and what subsequent recommendations these caregivers had for other family caregivers taking care of an older person with dementia. Four primary themes emerged from the content data analysis and included the following: (1) "do not do it alone"; (2) patience, love, and kindness; (3) "first of all, take care of yourself"; and (4) "get educated." This study is unique in asking directly of family caregivers of older persons who died of dementia what they learned and what they want to share and recommend to ongoing and future family caregivers.

Professionals' understanding of their responsibilities in the collaboration with family caregivers of older persons with mental health problems in Norway.

Research has highlighted the importance of health and social care professionals' collaboration with family caregivers. In the field of mental healthcare, involvement of family members is perceived as beneficial to the recovery process of the care recipient. Furthermore, family care-giving is an essential part of elderly care. It is well documented that family members need support to prevent negative consequences of care-giving. Nevertheless, involvement of and support for family caregivers have not developed into a common practice, and research has identified professional barriers to collaboration with family caregivers in several areas. The aim of this study was to explore professionals' experiences of collaboration with family caregivers of older persons with mental health problems, and how they understood their responsibility towards families. We conducted three focus group interviews with 18 health and social care professionals working in community-based services, in three rural municipalities in Western Norway. The thematic analysis by Braun and Clarke guided the analysis. The findings in relation to the professionals' role and responsibility towards family caregivers are presented in three themes: family caregivers - a resource that needs support; a responsibility with unclear boundaries; and balancing different needs. Professionals recognised family caregivers' need for support and acknowledged the importance of family relationships. However, they experienced dilemmas in performing their dual responsibility of caring for the older care recipient as well as the family member, which they described as having unclear guidelines. They also experienced that they had insufficient knowledge to take on this responsibility. We argue that the exercising of discretion is essential for the professionals' responsibility, and that clarification of their responsibility is needed. We recommend a stronger focus in education on developing competence in the family perspective. Furthermore, the apportionment of professionals' responsibility needs to be formalised, especially when several services are involved in providing care.

Family caregivers' perceived level of collaboration with hospital nurses: A cross-sectional study.

AimTo describe the extent of perceived collaboration between family caregivers of older persons and hospital nurses.BackgroundCollaboration between hospital nurses and family caregivers is of increasing importance in older patient's care. Research lacks a specific focus on family caregiver's collaboration with nurses.MethodUsing a cross‐sectional design, 302 caregivers of older patients (≥70 years) completed the 20‐item Family Collaboration Scale with the subscales: trust in nursing care, accessible nurse and influence on decisions. Data were analysed with descriptive statistics and bivariate correlations.ResultsFamily caregivers rated their level of trust in nurses and nurses' accessibility higher than the level of their influence on decisions. Family caregivers who had more contact with nurses perceived higher levels of influence on decisions (p ≤ .001) and overall collaboration (p ≤ .001).ConclusionFamily caregivers' collaboration with nurses can be improved, especially in recognizing and exploiting family caregivers as partner in the care for older hospitalized persons and regarding their level of influence on decisions.Implications for Nursing ManagementInsight into family caregivers' collaboration with nurses will help nurse managers to jointly develop policy with nurses on how to organise more family caregivers' involvement in the standard care for older persons.

Non-use of community health-care services – an exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia

AbstractCommunity health-care services for older, home-dwelling persons with dementia tend to be underutilised. Family care-givers provide substantial care, and they often arrange for and co-ordinate health-care services on behalf of persons with dementia. The aim of this study was to examine family care-givers’ knowledge of unused services and their self-reported reasons for non-use of such services. We gathered cross-sectional survey data from 430 family care-givers of older persons with dementia in Northern Norway. Multinomial logistic regression analysis was used to identify predictors of family care-givers’ knowledge of unused services. An open-ended question regarding reasons for non-use of services was analysed by thematic text analysis. Characteristics of family care-givers (e.g.education level) and factors related to the care-giving circumstances (e.g.negative impact of care-giving) predicted family care-givers’ knowledge of unused services. Reasons for non-use of services were multifaceted and complex, and were related to attributes of the person with dementia and/or the family care-giver (e.g.reluctance to use services) and/or the health-care services (e.g.low quality). Although services were unused, several family care-givers indicated substantial needs for the services. Strategies aimed at addressing the non-use of services should emphasise individuals’ and families’ needs and the adaptation of information about available services and their benefits for both care recipients and family care-givers. A relationship-centred care approach is thus recommended in dementia care.

Dying With Dementia: Caregiver Observations of Their Family Members' Physical Decline and Behavioral or Psychological Changes During Their Last Days.

Family caregivers of older persons with dementia have significant challenges across many domains. These reported problems encountered over their caregiving time are for many reasons, but what makes the caretaking difficult is complicated by both the unknown nature of the dementia disease and the dying trajectory. While there are studies, primarily from health-care professionals, of this dying process and the last few weeks of life for older persons with dementia, much less is known directly from the family caregivers' perspectives and experiences. This qualitative study of 30 caregivers of family members aged 65 years and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period and directed content analysis to understand the data. The study asked what physical, behavioral, and psychological changes they observed and experienced during their family members' last weeks of life. Three primary themes were identified around behavioral and psychological changes: (a) they become different people, (b) did not recognize caregiver, and (c) wandering and getting lost; and two primary themes identified physical decline: (a) system started shutting down and (b) drastically diminished self-sufficiency. Implications for families and professionals are reviewed and discussed.

ELDER ABUSE BY FAMILY CAREGIVER: DOES COGNITIVE IMPAIRMENT REALLY MATTER?

Previous research suggested that cognitive impairment is a risk factor for elder abuse. Persons with dementia experience elevated risk of abuse as compared to the general aging population. The present study compared rates of abuse reported by family caregivers of older persons with and without dementia. A total of 693 family caregivers participated, among which 592 were providing care older persons with dementia and 101 were providing care to older persons without. Participants provided information on their demographic characteristics, care recipient physical functioning (Instrumental Activities of Daily Living), behavioral problems (Cohen Mansfield Agitation Inventory), caregiver stress (Zarit Burden Interview), emotional and instrumental social support, and abusive behaviors directed at the care recipients (Conflict Tactics Scale and Potentially Harmful Behaviors). Abuse is common in this sample: 46.8% reported potentially harmful behaviors, 52.7% reported psychological aggression, 11% physical assault, and 1.3% injury. No significant difference was observed between caregivers providing care to older persons with or without dementia (p>.05). A series of logistic regression was conducted to determine factors associated with abuse. Care recipient behavioral problems and caregiver burden were two prominent factors associated with potentially harmful behaviors and all forms of abuse. Behavioral problems are common in persons with cognitive impairment and many caregivers feel stressful managing them. It is plausible that cognitive impairments per sec do not increases risk of abuse, but the associated characteristics do. Helping family caregivers manage the caregiving situation and their expectation, positive appraisal and cognitive restructuring may help prevent elder abuse.

Burden on Caregivers of Adults with Multiple Chronic Conditions: Intersectionality of Age, Gender, Education level, Employment Status, and Impact on Social Life-CORRIGENDUM.

Intersectionality analysis is the study of overlapping or intersecting social identities. Intersecting social identities may have an impact on the perception of burden by family caregivers of older persons with multiple chronic conditions (MCC). The purpose of this study was to explore the interaction of social factors on the burden of caring for older adults with MCC. A total of 194 caregivers of older adults with MCC were recruited from Alberta and Ontario. Survey data were collected at two time points, six months apart. Additive and multiplicative models were analysed using a generalised linear model to determine the level of caregiver burden. Medium-high social interference (impact on social life) was associated with higher burden when adjusted for age, gender, education, and employment status. The overall results of the five-way interaction suggest that males in general had lower burden scores than females. Irrespective of their education and employment status, females had generally higher burden scores. These results add to the current body of literature, suggesting areas for further research to fill knowledge gaps, and promoting ideas for evidence-guided public health interventions that focus on caregivers.

Burden on Caregivers of Adults with Multiple Chronic Conditions: Intersectionality of Age, Gender, Education level, Employment Status, and Impact on Social Life.

Intersectionality analysis is the study of overlapping or intersecting social identities. Intersecting social identities may have an impact on the perception of burden by family caregivers of older persons with multiple chronic conditions (MCC). The purpose of this study was to explore the interaction of social factors on the burden of caring for older adults with MCC. A total of 194 caregivers of older adults with MCC were recruited from Alberta and Ontario. Survey data were collected at two time points, six months apart. Additive and multiplicative models were analysed using a generalised linear model to determine the level of caregiver burden. Medium-high social interference (impact on social life) was associated with higher burden when adjusted for age, gender, education, and employment status. The overall results of the five-way interaction suggest that males in general had lower burden scores than females. Irrespective of their education and employment status, females had generally higher burden scores. These results add to the current body of literature, suggesting areas for further research to fill knowledge gaps, and promoting ideas for evidence-guided public health interventions that focus on caregivers.

Needs Assessment for Turkish Family Caregivers of Older Persons with Cancer: First-Phase Results of Adapting an Early Palliative Care Model.

Background: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers. Objective: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer. Methods: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support. Results: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services. Conclusion: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.

Crossing, Trudging and Settling: A phenomenological inquiry into lived experience of Asian family caregivers of older persons with dementia

Throughout Asian societies, family members often adopt the role of caregiving for older persons, providing essential care for loved ones with dementia. To date, there has been limited insight into the lived experience and meaning ascribed to the journey of these caregivers. This descriptive phenomenological study aims to explore the lived experience of Asian family caregivers of persons with dementia. Semi-structured face-to-face interviews were conducted with 16 family members caring for aged persons with dementia. Interviews were audio-recorded and data analysed using Colaizzi's technique. Analysis revealed the essential structure of a caregiver's journey with three major transitions, namely: (1) Crossing the threshold from ordinary world into caregiving world, (2) Trudging on the road of trials and obstacles, and (3) Settling into a new normalcy. Understanding the lived experience of Asian caregivers can help clinicians in targeting relevant support and information, and prepare new caregivers for the demands of their role.