Family Caregivers Of Older People Research Articles

Family/caregiver influence on osteoporosis management for older people: an integrative review.

An integrative literature review was conducted to understand family/caregiver influence on osteoporosis management for older people. Findings include caregivers' overprotection, caregivers' risks for fragility fractures due to caregiving role, poor bone health in caregivers, and caregivers' burden and facilitators. Caregivers should be included in bone health and discharge planning. Literature on family/caregiver influence on osteoporosis management for older people is sparse. Older people are prone to osteoporosis and fragility fractures due to their age, often triggering the need for a caregiver after experiencing a fragility fracture. These fractures pose significant costs to the patient and health systems and are projected to increase with the aging population. This study applied an integrative literature review methodology to key literature findings on family/caregiver influence on osteoporosis management for older people. Key findings include caregivers' tendency to overprotect persons who experience hip fracture by limiting mobilization, thus impeding recovery, caregivers' risks for their own fragility fractures due to the demands of their caregiving role, risks of poor bone health in caregivers, and caregivers' experience of significant burden for which facilitators have been identified. Family caregivers of older people with osteoporosis have unique needs and require support and resources, especially after their loved one experiences a hip fracture. Informal caregivers must be considered in bone health education and discharge planning. They should be considered in the creation of osteoporosis guidelines and within the work of fracture liaison services. More research is needed to increase understanding about family caregiver influence on osteoporosis management.

The Caregiving Burden of Older People with Functional Deficits and Associated Factors on Malaysian Family Caregivers.

Providing care to older people can be an extremely complex task, given their increased functional deficits, which may lead to family caregivers experiencing burnout and a deteriorated health status. This study investigated the caregiving burden of older people with functional deficits on family caregivers and associated factors. This cross-sectional study was conducted on family caregivers of older people with functional deficits living in FELDA schemes in Pahang, Malaysia. A self-administered questionnaire was used to collect data, which included the sociodemographical profile, health status and caregiving demands factors. The caregiving burden was assessed using the Malay version of the Zarit Burden Interview (ZBI). Multiple linear regression was used to assess the factors associated with burden. A total of 271 family caregivers completed the questionnaire. Their mean age was 45.8 (SD 0.9) years old. The mean score for caregiving burden was 18.5 (SD 13.6). Caregivers' gender (3.5 [95% CI: 0.2, 6.8]; P = 0.037), older people with chronic disease (9.6 [95% CI: 2.4, 16.9]; P = 0.010) and the functional independence of older people (-1.1 [95% CI: -1.6, -0.6]; P < 0.001) were predictors of family caregiving burden. The caregiving burden among family caregivers was mild and influenced mainly by care recipients' health status. A proper assessment should be conducted and relevant health education provided to prepare family caregivers to care for their family members before discharge from the hospital.

The Role of Social Isolation on Mediating Depression and Anxiety among Primary Family Caregivers of Older Adults: A Two-Wave Mediation Analysis

BackgroundPrimary family caregivers of older people with chronic care conditions are highly vulnerable to social isolation and psychological strains such as depression and anxiety due to their demanding responsibilities. This study examines how social isolation mediates the relationship between caregiving stress and mental health symptoms of primary family caregivers.MethodsThe analytic sample included 881 primary caregivers of older adults from the 2015 and 2017 National Study of Caregiving (NSOC). Social isolation was measured using a composite structure that includes objective social disconnectedness and subjective loneliness. Two-wave mediation models were estimated to examine longitudinally if social isolation mediated the relationship between caregiving stress (subjective & objective stress) and mental health symptoms (depression & anxiety) of primary caregivers.ResultsThe study findings indicate that both subjective (β = 0.32, p < 0.001) and objective stress (β = 0.21, p = 0.003) have direct effects on depression among primary caregivers. Social isolation was found to only mediate the relationship between objective stress and depression (β = 0.18, p < 0.001). In contrast, no significant direct and indirect pathway was found in the anxiety model.ConclusionsThe study demonstrates the internal mechanism where objective strains of caregiving make family caregivers socially isolated, which in turn leads to increased symptoms of depression. Future interventions and practices aimed at improving the psychological well-being of family caregivers should prioritize strategies aimed at increasing social engagement, particularly for those with heavy caregiver burdens.

Risk factors associated with home care safety for older people with dementia: family caregivers’ perspectives

BackgroundMany older people with dementia currently prefer home care; however, homes are neither professionally designed nor regulated like health care facilities, and home care is more prone to safety incidents. Many studies have examined home care safety for older people with dementia. However, factors contributing to safety incidents in home care have not been adequately considered. This study explored the risk factors for home care safety for older people with dementia based on the perspective of family caregivers.MethodsThis study used a qualitative research approach; a total of 24 family caregivers were interviewed face-to-face and semi-structured from February 2022 to May 2022, and the Colaizzi seven-step phenomenological research method was used to analyze the data and refine the themes.ResultsSafety risks in home care for older people with dementia stem from five areas: poor health of older people with dementia, dementia symptoms, unsafe home environment, the insufficient caring ability of family caregivers, and lack of safety awareness of family caregivers.ConclusionThe risk factors for home care safety for older people with dementia are complex. And as the primary caregivers of older people with dementia, the caregiving ability and safety awareness of family caregivers primarily determine the safety of home care for older people with dementia. Therefore, when addressing home care safety for older people with dementia, the focus should be on providing targeted education programs and support services for family caregivers of older people with dementia.

Rewriting the Story of Mid- and Late-Life Family Caregiving: Applying a Narrative Identity Framework.

Family caregivers of older people with health needs often provide long-term, intensive support. Caregivers are, in turn, shaped by these caregiving experiences. According to the narrative identity framework, self-narratives from lived experiences influence self-beliefs and behaviors. We assert that family caregiving experiences, filtered through individuals' memory systems as self-narratives, provide substantial scaffolding for navigating novel challenges in late life. Self-narratives from caregiving can guide positive self-beliefs and behaviors, leading to constructive health-focused outcomes, but they also have the potential to guide negative self-beliefs or behaviors, causing adverse consequences for navigating late-life health. We advocate for incorporating the narrative identity framework into existing caregiving stress models and for new programs of research that examine central mechanisms by which caregiving self-narratives guide self-beliefs and behavioral outcomes. To provide a foundation for this research, we outline 3 domains in which caregiving self-narratives may substantially influence health-related outcomes. This article concludes with recommendations for supporting family caregivers moving forward, highlighting narrative therapy interventions as innovative options for reducing the negative consequences of maladaptive caregiving self-narratives.

Transforming a Negotiation Framework to Resolve Conflicts among Older Adults and Family Caregivers.

Family caregivers of older people with Alzheimer's dementia (PWD) often need to advocate and resolve health-related conflicts (e.g., determining treatment necessity, billing errors, and home health extensions). As they deal with these health system conflicts, family caregivers experience unnecessary frustration, anxiety, and stress. The goal of this research was to apply a negotiation framework to resolve real-world family caregiver-older adult conflicts. We convened an interdisciplinary team of national community-based family caregivers, social workers, geriatricians, and negotiation experts (n = 9; Illinois, Florida, New York, and California) to examine the applicability of negotiation and conflict management frameworks to three older adult-caregiver conflicts (i.e., caregiver-older adult, caregiver-provider, and caregiver-caregiver). The panel of caregivers provided scenarios and dialogue describing conflicts they experienced in these three settings. A qualitative analysis was then performed grouping the responses into a framework matrix. Upon presenting the three conflicts to the caregivers, 96 responses (caregiver-senior), 75 responses (caregiver-caregiver), and 80 responses (caregiver-provider) were generated. A thematic analysis showed that the statements and responses fit the interest-rights-power (IRP) negotiation framework. The interests-rights-power (IRP) framework, used in business negotiations, provided insight into how caregivers experienced conflict with older adults, providers, and other caregivers. Future research is needed to examine applying the IRP framework in the training of caregivers of older people with Alzheimer's dementia.

Social support and associated factors among family caregivers of older people in North-East Peninsular Malaysia.

The negative health results associated with the family caregivers of older people can be alleviated with social support, which is considered a valuable resource. Hence, the factors contributing to social support need to be understood. This study aimed to evaluate the social support associated with the family caregivers of older people. A cross-sectional study was conducted among 231 family caregivers of older people conveniently selected from two districts in Kelantan, a state in the North-East Region of Peninsular Malaysia. Data were gathered between June to December 2021 using a Multidimensional Scale of Perceived Social Support (MSPSS) questionnaire. Descriptive statistics were used to summarize the data in frequencies and percentages. Independent t-test and one-way analysis of variance were used to examine correlations among variables. The mean scores of social support for family caregivers were significantly higher among their family (Mean ± SD; 5.44 ± 0.969) and other important people (5.25 ± 1.123) compared to their friends (4.84 ± 1.094). Caregivers' gender and duration of caregiving were significant factors associated with social support (p <0.05). The family caregivers received maximum support from their family and other important people, but they were less supported by their friends. This study also observed that the perceived social support of the caregivers of older people was affected by several factors, such as gender and duration of caregiving. This finding gives nurses and other healthcare workers the basic information they need to enhance nursing interventions and promote social support among those who care for older people, which can positively impact caregiving.

Support for family caregivers of older people during the COVID-19 pandemic

This study aims to identify the type of support received by family caregivers of older people during the COVID-19 pandemic, as well as the associated socioeconomic health and care-related factors. Data from CUIDA-COVID study, an online questionnaire conducted from august to november 2020 (n = 4,820) were used. Three multiple models were built, with the following outcome: contracted support, family support, and lack of support. Independent variables related to socioeconomic, health, and care aspects were converted into dichotomous categories. Family support was the most common (48.6%), followed by lack of support (38.3%), and contracted support (13.1%). No significant associations were observed between race/skin color, poverty status, chronic back pain and negative mood with any type of support. Factors strongly associated (adjustedPR > 2.0) with contracted support were: the non-sharp decrease in income during the pandemic; non-dedication to full-time care; self-rated good/excellent health; and the high degree of dependence of the older individual. For family support, the main associations were: the non-marked increase in the effort to care during the pandemic, the non-dedication to full-time care and the sharp decrease in income during the pandemic. The characteristics associated with lack of support were: living with the older person; dedication to full-time care; living in households with 1 or 2 people; and report a sharp increase in effort to care during the pandemic. Overall, caregivers with contracted support had the best socioeconomic, care and health conditions. Lack of support was related to worse health and care conditions, while family support was related to worse socioeconomic conditions.

A participatory arts programme - Shared experience for family caregivers and care recipients.

This study aimed to describe family caregivers of older people's experiences of participatory art interventions, including music, dance and visual arts. A descriptive qualitative study. Thematic interviews were conducted with 12 family caregivers. Qualitative data were analysed with thematic analysis. The results illustrated the meaning of art groups, which included a shared feeling of togetherness, empowering and activating peer support and a sense of communality. Art groups also represented a hobby, enhancing caregivers' social and mental well-being. The art groups could be described as an art-driven, participatory shared experience. Participatory arts are noteworthy contributors to the well-being of family caregivers and care recipients, especially from peer support and communality. Further research is needed to find out about participants' preferred art-based activities and their impact on their well-being. No patient or public contribution because of inflexibility in the timing of engagement.

Resilience Level of the Family Caregivers of the Elderly in Mashhad, Iran During the COVID-19 Pandemic

Background &amp; Aims Resilience is defined as a person’s ability to maintain psychological balance and recover from challenging conditions. Due to the very important role of family caregivers in the treatment of older patients with COVID-19, attention to their health and well-being has been increased. This study aims to determine the resilience level of the family caregivers of older people during COVID-19 pandemic in Mashahd, Iran. Materials &amp; Methods This descriptive-analytical study was conducted on 120 family caregivers of older people who referred to urban health centers in Mashhad, Iran. Sampling was done in using cluster random sampling method from April to June 2022. The instrument was a two-part questionnaire included demographic form (surveying age of the elderly and caregiver, gender of caregiver, educational level of caregiver, employment status of caregiver, marital status of caregiver, and the relation of caregiver with the elderly) and the Connor-Davidson resilience scale. Data analysis was done in SPSS v.23 software using descriptive and inferential statistics. Results The mean age of family caregivers and elderly were 39.94±1.32 and 74.44±3.17 years, respectively. The age of caregivers ranged 20-74 years and the age of the elderly ranged 60-89 years. The mean resilience score of caregivers was 49.40±13.07, which is low. There was a significant relationship between resilience score and educational level (P&lt;0.05), marital status (P&lt;0.001) and employment status of family caregivers (P&lt;0.05). The correlation between resilience and caregiver’s age (r=0.17) and elderly’s age (r=0.13) was positive, but weak. Conclusion Family caregivers of the elderly in Mashhad city have low resilience. Their educational level, employment status, and marital status are related to their resilience level. Attention to these factors can help health care providers to develop plans for increasing their resilience and improving the quality of life of the elderly.

I lack 'me-time': The experiences of family caregivers of elders with Diabetes Mellitus in a selected village in South Africa.

Family caregiving is common in African countries where the family plays a crucial role in caring and supporting a family member in need of care. Most older people who suffer from chronic diseases, including Diabetes Mellitus, stay at home where family members and relatives are responsible for their day-to-day care. The purpose of this study was to explore the experiences of family caregivers of older people living with Diabetes Mellitus in a rural village in South Africa. This study was conducted in a village located in the Thulamela municipality of the Vhembe district, in the Limpopo province. A qualitative exploratory, descriptive research design was used. Purposive sampling was used, and data were collected using a semi-structured interview guide. Data saturation occurred after interviewing 17 participants and were analysed using thematic analysis. Trustworthiness was ensured through strategies of credibility, dependability, conformability, and transferability, and ethical principles were applied. Three themes emerged: participants sacrificed time for work, time for self-care, and devised coping strategies. These findings revealed that family caregivers of older adults diagnosed with Diabetes Mellitus sacrificed their time in order to provide care. However, the findings further revealed that family caregivers devised strategies to cope through prayer and acceptance. The study revealed several challenges experienced by family caregivers of older people living with Diabetes Mellitus. The National Department of Health, together with the civil society would gain an in-depth understanding of the burden of Diabetes Mellitus in the family setting and develop strategies to improve the situation.

Experiences of family caregivers of the older people with limitations in activities: A qualitative study.

Functional disabilities increase with ageing and limitations in daily living activities (ADLs) occurred as a consequence. Older people living at home may therefore become dependent on family members in managing activities in daily living. As the informal caregivers' role is known to be challenging, their experiences need to be explored to strengthen their new roles as family caregivers. This study aimed at exploring family caregivers' experiences of providing care for older people living at home with limited ADLs in Sri Lanka. Caregivers caring for older people with limitations in activities at home were purposively selected. Limitations in ADL were determined using the Sinhala-validated Barthel Index. Data were collected through in-depth interviews with 20 caregivers who cared for older people with several basic self-care limitations. Data were analysed using thematic analysis. The results consist of three themes related to caring for older people with limited ADLs: committed to providing compassionate care for the activity-limited older person, trapped in one's own home by caring for the activity-limited older person and in need of respite and support in caring for older persons with limitations of activity. Motivated to care, adapting to care-giving challenges, changed life pattern, neglecting one's own health, emotional suffering, lack of knowledge and skills and wanting assistance in care-giving and with financial support were resultant subthemes. Family caregivers of older people with limited activities living at home, face many challenges to their own health. Supporting interventions will therefore be necessary. An introduction of educational training programmes for informal caregivers would promote the health and well-being of functionally disabled older people and their caregivers. Developing home-based care will be a future solution since the availability of informal caregivers will be at risk due to a rapid increase in older people and social changes related to the family structure.

The Medication-Related, Information-Seeking Experiences and Barriers for Family Caregivers of Older People

Objective To characterize family caregivers of older people' experiences related to medication information-seeking, including the ability to find medication information and barriers faced in the medication information-seeking process. Design A prospective cross-sectional survey of family caregivers of older people. Setting An online panel of self-identified family caregivers. Participants Family caregivers of older people 60 years of age or older. Results A total 555 family caregivers of older people responded to the survey. Caregiver respondents' mean age was 43.6 (± 14.0) years; they were primarily female (82.5%) and White (74.4%). About three-quarters of respondents assisted with managing medications for care-recipients. Caregivers whose care-recipients were taking medications (n = 537) performed a variety of medication-related activities with 67.8% looking up information online in the last month. While 70.6% of caregivers have asked pharmacists about medication information, only 21.0% considered pharmacists their primary source of such information. Barriers to looking for medication-related information included lack of time to speak to medical providers (51.0%) and pharmacists (45.3%), being unsure about the best source for information (45.9%), and time needed to care for others (43.0%). Conclusion Family caregivers of older people are involved in managing medications, including looking up medication-related information. Several barriers impact caregivers' ability to find medication-related information. Pharmacists can be more proactive in assessing and supporting caregivers' medication-related information needs.

Impact of the COVID-19 outbreak on the difficulties and burden experienced by family caregivers of older dependent persons

PurposeThe purpose of this paper is to identify the difficulties and overload/burden experienced by family caregivers of older dependent people during the COVID-19 outbreak.Design/methodology/approachA descriptive and cross-sectional study was conducted. This work was guided according to the Guideline strengthenin the reporting of observational studies in epidemiology (EQUATOR checklist). The study included 65 family caregivers of older people with physical or mental dependence. Caregivers were selected by convenience sampling through a national association of informal caregivers. Participants responded to an online questionnaire, which aimed to assess difficulties and burdens experienced during the pandemic. Ethical principles were followed throughout the research.FindingsThe participants were mostly women, with an average age of 53 years, teleworking and cohabiting with the dependent elderly. Most caregivers reported that the pandemic has led to an increase in daily difficulties and associated burden. There was a statistically significant increase in hours devoted to care during the pandemic. Also, caregivers reported less time to take care of themselves and greater fatigue during this period.Research limitations/implicationsThis study had some limitations. For example, the small sample size. The sample was collected through an online version, and many caregivers did not have the digital skills needed to complete the questionnaires, and most of them were busy (divided between teleworking and household responsibilities). Another limitation was related to the perceived priority of caregivers because the majority of them considered this was a time-consuming study and saw no immediate benefits. Furthermore, they considered that this study has taken their time to manage all the provision of care to the elder relative and other activities related to their children who were also in quarantine. Finally, to date, there is no sufficient evidence to compare our results with other national and international studies. Further research is needed to allow the scalability of results and to apply the best available knowledge to mitigate the known and potential effects of this pandemic.Practical implicationsThis study highlighted that frontline caregivers suffered a negative impact on their physical and mental health, in addition to a significant economic burden during the pandemic outbreak. More research in this field is needed to plan, train and manage large-scale public health emergencies.Social implicationsThe COVID-19 pandemic imposed physical distancing, which profoundly affected the physical and mental health of community-dwelling older people and their family caregivers. Because of the confinement and closure of some social support institutions, family caregivers found themselves in a complex situation, having to reconcile care and teleworking. Therefore, it is important to identify the impact of the COVID-19 pandemic on the difficulties and burden of these caregivers to implement and develop social and health support measures.Originality/valueThis paper addresses an increasingly important issue – the burden and difficulties of family caregivers, in the light of a new reality – the Covid-19 pandemic, which has brought new difficulties for this population.

Resilience building among Chinese family caregivers of older people with Parkinson's disease in Shanghai.

Despite a rapid increase in people with Parkinson's disease (PD) in China, studies focusing on caregiver burden remain scarce. Challenges faced by caregivers in other Asian societies are also underexplored in the PD-related research field. To addresses this gap, this study drew on the theory of resilience and examined the caregiving experiences of Chinese family caregivers for older people with PD. We conducted participant observation and semi-structured interviews with 15 family caregivers of older people with PD in Shanghai in 2018. We used thematic analysis to identify key patterns of stressors and factors affecting the capacity of caregivers to address burdens. Our analysis shows that stressors faced by Chinese PD caregivers included physical limitations, psychological and emotional problems, reduction in social connections, financial burden and lack of information and knowledge. Three levels of factors-personal, social and structural-played different roles in resilience among Chinese PD caregivers. However, resilience was unevenly developed among PD caregivers across gender, kinship, residential status and generation. Our study provides novel empirical evidence about the burden on Chinese PD caregivers. It can inform policymakers and social workers as they develop a holistic understanding of promoting resilience building in this rapidly growing group. Our study also enriches cross-cultural knowledge about factors contributing to caregivers' resilience building in Asian societies.

Usability of the COPE Index in the assessment of subjective caregiving burden of family caregivers of older people: A cross-sectional Study.

The aim of the study was to evaluate the usability of the COPE Index in the assessment of subjective caregiving burden of family caregivers providing care for older people in their home environment. A cross-sectional study was conducted among 110 family caregivers. The criterion of including caregivers in the study was their provision of care at home for an older person who needed and received regular long-term nursing care in their home environment. The study was carried out using the COPE Index questionnaire in assessing the situation of family caregivers. The study was reported according to the STROBE checklist. The mean result of assessment of negative impact of care in the studied group of caregivers was 16.5±SD 3.0, positive impact of care - 10.4±SD 2.8 and the quality of support - 9.2±SD 1.8. A higher level of caregiving burden was found in 58.2% caregivers. The vast majority of the caregivers were women (83.6%). The care was most often provided by the elderly people's children (51.0%), less often by spouses (17.0%), siblings (10.0%), grandchildren (10.0%) and paid caregivers (10.0%). The COPE Index proved to be a useful instrument for routine application in home environment to identify care deficits. Greater caregiving burden of family caregivers of disabled older persons was associated with a higher number of nights devoted to care, growing limitations on professional life, choice to provide care, the caregiver's emotional state, the lack of support in the caregiving role, support from family members and the state of cognitive functions of the care recipient. This study may help identify and characterise the profile of family caregivers who are at risk of caregiving burden, and can be used to apply well-designed activities aimed at reducing their suffering and providing them support.

Improving the care stress, life quality, and family functions for family-caregiver in long-term care by home modification.

This study examined whether interventions through barrier-free home environment improvements could reduce family caregivers’ care stress, improve their family functions, and increase their quality of life. This study recruited family caregivers of older people with disabilities from a long-term care management center in central Taiwan. These older people required improvements related to a barrier-free home environment. A pretest was conducted before and a post-test was conducted 2 months after the improvements. The content of the pretest and the post-test questionnaires included: demographic characteristics, Caregiver stress scale, Family functions scale, World Health Organization Quality of Life-BREF (WHOQOL-BREF) Questionnaire. This study recruited 72 family caregivers; the average age was 56.25 ± 12.99 years. The results indicated that interventions through barrier-free home environment improvements could significantly reduce the family caregivers’ care stress, improve their family functions (e.g., reducing conflicts), and enhance their quality of life. Additionally, after intervention, the family cohesion of family caregivers caring for those with mild disability improved to a greater extent than did that of those caring for people with other disease severities. This study revealed that interventions involving barrier-free home environment improvements have positive effects on family caregivers.

Neuropsychiatric symptoms associated with family caregiver burden and depression.

ABSTRACTAlzheimer's disease (AD) is a progressive and degenerative condition affecting several cognitive areas, with a decline in functional abilities and behavioral changes.Objective:To investigate the association between neuropsychiatric symptoms in older adults with AD and caregiver burden and depression.Methods:A total of 134 family caregivers of older people diagnosed with AD answered a questionnaire with sociodemographic data and questions concerning the care context, neuropsychiatric symptoms, caregiver burden, and depressive symptoms.Results:Results revealed that 95% of older adults had at least one neuropsychiatric symptom, with the most common being: apathy, anxiety, and depression. Among the 12 neuropsychiatric symptoms investigated, 10 were significantly associated with caregiver burden, while 8 showed significant correlations with depressive symptoms.Conclusions:Neuropsychiatric symptoms were related to caregiver burden and depressive symptoms. In addition to the older adult with AD, the caregiver should receive care and guidance from the health team to continue performing quality work.

Quality of Care Provided by Family Caregivers of Older People With Dementia: Measurement and Interpretations

Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.

The experience of caring for an older relative in Chile: going beyond the burden of care

AbstractCare in Chile, as in most Latin American countries, remains largely the responsibility of female family members in informal arrangements with little government support. The analysis of caring for a dependent older person has commonly been approached from the burden of care perspective, focusing on the tasks carried out, the time spent providing care and the negative (burdensome) consequences for the care-giver. This study reveals the daily experiences of family care-givers of older people through a thematic data analysis of 42 interviews with main family carers of an older person as experienced by the carers themselves. Findings highlight the complex nature of care work. Tasks carried out do not necessarily relate to the intensity of the care experience or a negative experience. Care-givers can work long hours providing care and still feel comfortable and find the experience emotionally rewarding. Care-givers might also carry out only a few tasks and experience pressure. The broader social and economic context can generate constraints that make a specific set of tasks easier or harder on the carer, but these contextual factors do not fully explain the experience of care. Relations, and particularly those that carry an emotional component such as the carer-older person, carer-siblings and carer-spouse, must be considered alongside the tasks and the difficulties or potential constraints of the context to understand the care experience.