Informal Care Time and Costs of Dementia Care in Benin (West Africa).

BACKGROUND: Dementia is a growing global health challenge, with significant socioeconomic implications. This study examined the informal care duration and related costs along with the total cost of care for older individuals with dementia in Benin, West Africa, providing insights into a region with limited dementia research. METHODS: We conducted a cost-of-illness study in Benin. Both hospital and community recruitments were used to enroll adults aged ≥60 years and their primary caregivers. Structured questionnaire and validated tools were used to collect the demographic, clinical, healthcare resource utilization data as well as informal care duration. Replacement costs approach was performed to valuate informal care time. Official exchange rates from the World Bank were used to convert costs from local currency to purchasing power parities dollars (PPP$). RESULTS: Data from 135 individuals with varying dementia stages revealed that dementia places substantial caregiving demands, predominantly on women who provide up to 8 h of daily care. In 2021, the mean annual cost of dementia care was estimated to be PPP$ 2,399.66 ± 2,057.07. Informal care represented a significant portion of dementia expenses, up to 92% of the total care costs in this study. DISCUSSION: Policy interventions are urgently needed to address the dementia care challenges in Benin, especially because economic transitions and educational advancements may reduce the availability of informal caregivers. This emphasizes the vital role of informal caregivers and underscores the need of implementing dementia policies to support families facing the evolving challenges of dementia care.

Methods for measuring and valuing informal care: A systematic review and meta-analysis in stroke.

OBJECTIVES: To accurately capture informal care in healthcare evaluations, rigorous approaches are required to measure and value this important care component. In this systematic review and meta-analysis, we intended to summarize the current methods of measuring and valuing informal care costs in healthcare evaluations (full and partial healthcare evaluations, including cost of illness and cost analysis) in stroke. METHODS: A systematic search was conducted in Medline, Embase, EconLIT, and CINAHL. We used EndNote 20, Research Screener, and Covidence platforms for screening and data extraction. A meta-analysis was performed on informal care hours, and a sub-group meta-analysis was conducted based on stroke severity. RESULTS: A total of 31 articles were included in the qualitative synthesis. There was variation among the studies in the informal care measurement and valuation approaches. The meta-analysis of studies where data on informal care hours were available showed an estimate of informal care hours of 25.76 per week (95% Confidence interval [CI]: 13.36-38.16 with a high heterogeneity (I2=99.97%). The overall risk of bias in the studies was assessed as low. CONCLUSIONS: Standardizing the measurement and valuation of informal care costs is essential for improving the consistency and comparability of economic evaluations. Pilot studies that incorporate standardized informal care cost valuation methods can help identify any practical challenges and capture the impact of informal care more accurately.

Putting a Dollar Value on Informal Care Time Provided to People Living With Dementia: A Discrete Choice Experiment.

OBJECTIVES: Informal care represents a significant cost driver in dementia but monetizing informal care hours to inform cost-of-illness or economic evaluation studies remains a challenge. This study aimed to use a discrete choice experiment to estimate the value of informal care time provided to people with dementia in Australia accounting for positive and negative impacts of caregiving. METHODS: Attributes and levels were derived from a literature review, interviews with carers, and advice received from an advisory group. Attributes included 4 positive and negative caregiving experiences, in addition to "hours of care provided" and the "monetary compensation from the government." A D-efficient design was constructed with 2 generic alternatives that represented hypothetical informal caregiving situations. The discrete choice experiment survey was administered online to a representative sample of the Australian general population and a group of informal carers of people with dementia. The willingness to accept estimates were calculated for the 2 samples separately using the mixed logit model in the willingness to pay space. RESULTS: Based on 700 respondents included in the analysis (n = 488 general public, n = 212 informal carers), the mean willingness to accept for an additional hour of informal care, corrected for the positive and negative impacts of informal care, was $21 (95% CI 18-23) for the general public and $20 (95% CI 16-25) for the informal carers sample. CONCLUSION: The estimates generated in this study can be used to inform future cost-of-illness studies and economic evaluations, ensuring that informal care time is considered in future policy and funding decisions.

Quality of life outcomes for informal carers of long-term care service users in Austria, England and Finland.

PURPOSE: The provision and funding of long-term care (LTC) for older people varies between European countries. Despite differences, there is limited information about the comparative performance of LTC systems in Europe. In this study, we compared quality of life (QoL) of informal carers of home care service users in Austria, England and Finland. METHODS: Informal carers were surveyed in Austria, England and Finland. The study data (n = 835) contained information on social care-related quality of life (SCRQoL) associated with the ASCOT-Carer measure, and characteristics of carers and care recipients from each country. We applied risk-adjustment methods using a fractional regression model to produce risk-adjusted SCRQoL scores for the comparative analysis. In a sensitivity analysis, we applied multiple imputation to missing data to validate our findings. RESULTS: We found that the mean values of the risk-adjusted SCRQoL of informal carers in England were 1.4-2.9% and 0.3-0.5% higher than in Finland and Austria, and the mean values of the risk-adjusted SCRQoL of carers in Austria were 0.8-2.7% higher than in Finland. Differences in the mean values of the country-specific risk-adjusted SCRQoL scores were small and statistically non-significant. English informal carers were less healthy and co-resided with care resipients more often than carers in Austria or Finland. CONCLUSION: Small differences between the risk-adjusted SCRQoL scores between Austria, England and Finland are consistent with the observation that the countries provide different types of support for informal carers. Our results help local and national decision-makers in these countries to benchmark their informal care support systems.

Informal care after hip fracture: prospective cohort.

BACKGROUND: Hip fracture is very common and it has life-shattering consequences for older persons. After discharge the older persons need help with even basic everyday activities from formal and informal caregivers. In Scandinavia formal care are well-developed however the presence of informal caregivers likely reflect on the amount of formal care and wears on the informal caregivers. This study explore how often and how much informal care (IC) older persons receive after hip fracture. METHOD: We contacted 244 community-dwelling older persons every two weeks the first twelve weeks after discharge after hip fracture and asked them if they received care from family and/or friends and how much. We used non-parametric statistics and level of significance was 95%. RESULTS: The proportion of older persons receiving IC was 90% and the median amount of IC was 32 hours (IQR 14-66). The number of older persons who received IC was highest the first four weeks after discharge and so was the amount of hours of IC. The older persons that were high-dependence on IC received a median of 66 (IQR 46-107) hours compared to the low-dependent of 11 hours (IQR 2-20). CONCLUSION: IC is very frequent, especially the first two to four weeks after discharge. The median IC was 32 hours from discharge to the 12-week follow-up. However, this figure tended to rise for persons with, among other, reduced functionality and those residing with a partner. IMPLICATIONS: With respect to local differences, the findings in this study are likely applicable to other Scandinavian countries. We strongly suggest that the variation in older person need for informal caregiver be given consideration in the prioritisation of resources. TRIAL REGISTRATION: This prospective cohort study of informal care, was part of a cluster-randomised stepped-wedge clinical controlled trial. Written consent was obtained required by regional ethics committee S-20200070. Data was collected in accordance with the Danish Data Protection Agency (20-21854).

The role of family support in the self-rated health of older adults in eastern Nepal: findings from a cross-sectional study.

BACKGROUND: Nepal's low fertility rate and increasing life expectancy have resulted in a burgeoning older population. For millennia, filial piety shaped family cohesion and helped Nepali older adults achieve positive outcomes, but recently, it has been eroding. Furthermore, there are not enough institutional support options or alternatives to family-based care to deal with the biosocial needs of older adults. This study explored the association between family support and self-rated health among Nepali older adults. METHODS: A community-based cross-sectional survey in eastern Nepal's two districts, Sunsari and Morang, interviewed 847 older adults (≥ 60 years). The final analytical sample was 844. Participants were asked whether they received assistance with various aspects of daily life and activities of daily living from their families. Multivariable logistic regression examined the association between family support and self-rated health. RESULTS: Participants who received support with various aspects of daily life had 43% higher odds of good health, but after adjusting for control variables, the result only approached statistical significance (p = 0.087). Those who received family assistance with activities of daily living had nearly four times higher odds (OR: 3.93; 95% CI: 2.58 - 5.98) of reporting good health than participants who lacked this support. CONCLUSIONS: Given the important role of family support in Nepali older adults' health, government programs and policies should create a conducive environment to foster family-based care until more comprehensive policies for older adults' care can be put into effect. The results of this study can also help shape the global aging environment by highlighting the need for family support in older care, particularly in low-income nations with declining traditional care systems and weak social security policies.

Different views on collaboration between older persons, informal caregivers and care professionals.

BACKGROUND: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. METHODS: Using Q-methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow-up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by-person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. RESULTS: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision-making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. CONCLUSIONS: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. PATIENT OR PUBLIC CONTRIBUTION: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications.

Mental health and self-rated health of older carers during the COVID-19 pandemic: evidence from England.

OBJECTIVES: Older carers play a vital role supporting population health and protecting health and social care systems, yet there has been little research on understanding the effect of the pandemic on this group. In this paper, we investigate caring as a factor contributing to mental and self-rated health. METHODS: We investigate cross-sectional and longitudinal associations between provision of family care and mental health and wellbeing using longitudinal data from 5,149 members of the English Longitudinal Study of Ageing who responded to Wave 9 (2018/2019) and two COVID-19 sub-studies (June/July 2020; November/December 2020). We use logistic or linear regression models depending on outcome measures, controlling for pre-pandemic socioeconomic, demographic, and health-related variables. RESULTS: Before the pandemic, 21% of respondents cared for family or friends. Older people caring for someone inside the household mostly continued to provide care during the pandemic, with more than a quarter reporting an increase in the amount of care provided. Co-resident carers were disproportionately female, older, in the lowest wealth quintile, and more likely to report disability and chronic conditions. Both cross-sectional and longitudinal analyses suggest that, compared to those caring for people living outside the household, co-resident carers were significantly more likely to report poorer mental health and self-rated health. CONCLUSION: The health of older carers worsened disproportionately in the first year of the pandemic, a period also characterised by disruptions to support and closure of respite services. Support for carers' mental and physical health requires greater policy attention, especially in pandemic conditions.

Why is the composition of older adults' care network associated with psychological wellbeing: an application of the self-determination theory.

OBJECTIVES: Older care recipients have different types of care networks, varying from spouse-only to large mixed care networks, that add to different levels of wellbeing. Applying Self-Determination Theory (SDT) to the care context, we argue that the care network composition may foster or hamper the three basic needs for wellbeing: relatedness, autonomy and competence. METHOD: Data are from ten observations between 1992 and 2022 of the Longitudinal Aging Study Amsterdam (N = 18,434 observations from 4,837 older Dutch adults). Five care network types are used: no care, partner, informal, formal or privately paid care. Mixed-hybrid-multilevel regression analysis of depressive symptoms as measure of wellbeing is applied on care network type and loneliness, mastery and care sufficiency as indicators of the three basic needs for wellbeing. RESULTS: Receiving care from a partner care network is, compared to the formal care network, the most negatively associated with depressive symptoms, followed by informal care and privately paid care. Differences in care network types existed in loneliness and care sufficiency, but not in mastery, and in part explained the association between care network types and depressive symptoms. Results of between and within effects are comparable. CONCLUSION: Using a rich data set and advanced methodology support the hypotheses that formal care networks hamper wellbeing due to insufficient care and increased loneliness, in particular compared to partner and informal care. The role of mastery was less important, possibly because it does not measure care related level of control.

'Moving on' for Adults With a Learning Disability and Their Families: A Constructivist Grounded Theory Study.

Ending familial co-residence, termed 'moving on' by participants, is an increasingly relevant life transition for people with a learning disability due to increasing life expectancy and policy developments. Nevertheless, there is an absence of research exploring this transition experience in a United Kingdom (UK) context. This constructivist grounded theory study therefore aimed to explore, conceptualise, and theorise the 'moving on' experiences of adults with a learning disability and their families. This article reports the experiences of five adults with a learning disability and nine family members in England, UK. Narrative interviews and creative storybook methods were used to collect data between April 2015 and May 2016. Constant comparative methods, theoretical sampling, and memo writing were used throughout data collection and analysis. Participants with a learning disability presented personal growth and greater life fulfilment over the course of the transition; they flourished. In parallel, family members relinquished their care responsibilities. Importantly, the iterative and reciprocal relationship between flourishing and relinquishing shows that ongoing family member involvement is crucial during and following relocation. Family members identified factors that potentially inhibit relinquishing: pressure to 'let go', different perceptions of independence between family members and service providers, inadequate future investment, and rapport with professional carers. These novel insights led to the generation of the first known mid-range theory concerning this transition, entitled 'Moving on: flourishing and relinquishing'. Findings will guide future research in this field and facilitate the design of appropriate support for people with a learning disability and their families.

U.S. dementia care spending by state: 2010-2019.

INTRODUCTION: Dementia is the fourth largest cause of death for individuals 70 years of age and older in the United States, and it is tremendously costly. Existing estimates of the indirect costs of dementia are dated and do not report on differences across the United States. METHODS: We used data from multiple surveys to create cost estimates and projections for informal dementia caregiving at the U.S. state level from 2010 through 2050. RESULTS: In 2019, the annual replacement cost of informal caregiving was $42,422 per prevalent case, and the forgone wage cost was $10,677 per prevalent case. In 2019, it would have cost $230 billion to hire home health aides to provide all this care. If past trends persist, this cost is expected to grow to $404 billion per year in 2050. DISCUSSION: The cost of informal care varied substantially by state and is expected to grow through at least 2050. HIGHLIGHTS: In the United States in 2019, foregone wages due to informal dementia care was $58 billion. Replacing informal dementia care with health aides would have cost $230 billion. These costs vary dramatically by state, even when assessed per prevalent case. These costs are expected to nearly double by 2050.

Supporting Individuals With an Acquired Brain Injury: An Interpretative Phenomenological Study Exploring the Everyday Lives of Caregivers.

Acquired brain injury (ABI) is one of the most common causes of disability and death globally. Support from informal caregivers is critical to the well-being and quality of life of people with ABI and supports the sustainability of global health and social care systems. This study presents an in-depth qualitative analysis of the experiences of eight British informal caregivers supporting someone with ABI. Semi-structured interviews were conducted with narratives transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Three superordinate themes were generated: making sense of brain injury; being consumed by caregiving; and, the changing self. These data highlight the impact of caregiving on the caregiver's illness perceptions and sense of self. By identifying negative and positive changes in the caregiver's sense of self, and dilemmas regarding the care recipient's behaviour, we address less understood aspects of caregiver experiences. Caregiving can pose both challenges to the caregiver's sense of identity and an opportunity for self-growth. Some caregivers exhibit resilience throughout their journey, with post-traumatic growth more apparent in the later stages of caregiving. Illness perceptions shape caregiver well-being and family dynamics and indicate the need to address stigmatisation and discrimination faced by ABI survivors and caregivers. Although some caregivers acquired positive meaning and enrichment from their caregiving, previously described challenges of ABI caregiving are supported. Overall, our findings support the need for timely psychological/mental health support for caregivers, caregiver education, and the provision of short breaks from caregiving.

The State of Family Caregiving Policy.

As the population ages and supportive services are increasingly delivered in home- and community-based settings, greater demands are placed on family caregivers. This essay introducing the special issue of the Journal of Aging and Social Policy discusses signs of progress on policies to ease the burden on family caregivers. It introduces a series of articles that reflect the growing body of research on caregiver-related policy actions. These actions range from expanding access to paid family leave and payment for providing care, to ensuring access to better data about family caregivers and improving the post- hospital discharge experiences of rural and underserved caregivers. It also explores a major conundrum around caregiving policy - why progress on family caregiving policy has been so slow, despite its clear importance to the health and welfare of those who receive supports, as well as to those providing supports. In addition, the essay discusses developments, such as Biden administration actions and the RAISE Family Caregiver Advisory Council, indicating that the political dynamic around caregiving has changed, concluding that this is a uniquely hopeful time for family caregiver-related policy.

The Impact of Informal Care on Healthcare Utilization of Older Adults with Functional Limitations in China.

Our study examines the impact of informal care on healthcare utilization, focusing on caregiver types, urban-rural, and gender differences. Analyzing data from the China Health and Retirement Longitudinal Study and using fixed effects models, we discovered complementary effects between informal care and healthcare. Specifically, spousal care increased inpatient care use, adult child care boosted both inpatient and outpatient use, and dual care from children and spouses showed the most significant impact on healthcare use. The association between informal care and healthcare use varied across gender or urban-rural residence. Our findings highlight the importance of caregivers in accessing healthcare services.

The Feasibility and Validity of Preference-Based Quality of Life Measures With Informal Carers: A Think-Aloud Study.

OBJECTIVES: A range of preference-based quality of life (QoL) measures have been proposed for use with informal carers. Qualitative evaluation of validity and feasibility of the measures is an important step in understanding whether measures will work as intended. At present, little is known about the performance of different types of preference-based QoL measures with informal carers. The objective of this study was to qualitatively assess the feasibility, content validity (including face validity), and acceptability of 5 QoL measures (the Carer Experience Scale, CarerQoL-7D, ASCOT-C, ICECAP-A, and EQ-5D-5L) with informal carers. METHODS: A total of 24 "think-aloud" interviews were conducted with a cross-section of carers of adults in the United Kingdom. This think-aloud process was followed by semistructured discussion to probe issues of validity and feasibility in more detail. The interview data were transcribed, coded to identify the frequency of errors in completing the QoL measures and thematically analyzed to study the validity, feasibility, and acceptability of the measures. RESULTS: Few errors (3%-7% per item) were identified in completing each of the measures with little distinct pattern. Most participants found the measures to be concise, clear, and relevant. Challenges included relevance, context, time period, missing items, multiple questions, and response options. Informal carers generally expressed a preference for using a care-related QoL measure. CONCLUSIONS: Existing preference-based QoL measures have encouraging validity and feasibility within a mixed sample of informal carers, with minor challenges raised. These challenges ought to be considered, alongside the decision context, when administering QoL measures in this context.

The association between financial support of adult children to their parents and informal care provision in China and its differences in household registration, residence arrangement and community-based care services: 2008 ~ 2018.

BACKGROUND: The changes in demographic and family structures have weakened the traditional norms of filial piety and intergenerational relationships dramatically. This study aims to examine the dynamic association between financial support of adult children to their parents and informal care provision in China and its differences in household registration, residence arrangement and community-based care services. METHODS: Data was derived from the 2008-2018 Chinese Longitudinal Healthy Longevity Survey (CLHLS), which is a longitudinal survey of a nationally representative sample of individuals aged 60 and over. Random effects model was used to assess the association between financial support and informal care provision of adult children to their parents. RESULTS: It was found that financial support showed an upward trend while informal care provision showed a download trend from 2008 to 2018. The result indicated a significant and negative association between financial support and informal care provision of adult children to their parents (B = -0.500, 95% confidence interval (CI) = -0.761 to -0.239). And the association was significant among elderly people who were from urban areas (B = -0.628, 95% CI = -0.970 to -0.287), co-resided with adult children (B = -0.596, 95% CI = -0.939 to -0.253), and had community-based services (B = -0.659, 95% CI = -1.004 to -0.315). CONCLUSION: Financial support was negatively associated with informal care provision of adult children to their parents in China, and the association has differences in household registration, residence arrangement and community-based care services. It is suggested that policymakers should prioritize planning interventions for elderly care services and establish a family caregiver support system.

Monetary valuation of COVID-19 informal care: caregivers' willingness to pay and willingness to accept.

BACKGROUND: Informal care can reduce hospitalization frequency and time, elevate bed turnover, and increase the health systems' capacity. This type of care has shown meaningful value in managing many cases through the COVID-19 pandemic. The present study aimed to identify determinants of monetary valuation of informal care and the burden of this care on the COVID-19 patients' caregivers. METHODS: Through a cross-sectional phone survey from June to September 2021 in Sanandaj city, the west of Iran, COVID-19 patients and their caregivers (Each Group No. 425) were separately interviewed. A simple probabilistic sampling method was applied. Two questionnaires were developed and used after validation. Monetary valuation of informal caregivers was done using Willingness to pay (WTP) and willingness to accept (WTA). Double hurdle regressions were used to determine related variables to WTP/WTA. R software was used for the data analysis. RESULTS: The total mean (Standard Deviation) of WTP and WTA were $12.02(28.73), $10.30(15.43) USD. Most respondents put a zero value on informal care by WTA (243(57.18%) and WTP [263 (61.88%)]. Caregivers' Employment, and being spouse/child of the care recipient increased the probability of reporting a positive value for WTP (p-value < 0.0001, p-value = 0.011 respectively) and WTA (p-value = 0.004, p-value < 0.0001 respectively). An increase in the number of caring days decreased the probability of reporting positive WTA (p-value = 0.001) and increased the mean of lnWTP (p-value = 0.044). Perceived difficulty in doing indoor activities and perceived difficulty in doing outdoor activities decreased lnWTA mean (p-value = 0.002) and lnWTP mean (p-value = 0.043) respectively. CONCLUSIONS: Increasing caregivers' self-efficacy and facilitating their involvement in the caring process could be facilitated through flexible work status, educational programs, and interventions on decreasing their burnout.

Informal caregiving, time use and experienced wellbeing.

Informal carers report lower evaluative wellbeing than non-carers. In contrast to this literature and our own analysis of evaluative wellbeing, we find carers have a small but higher level of experienced wellbeing than non-carers do. To investigate why, we use decomposition analysis which separates explanatory factors into how time is used and how those uses of time are experienced. We analyze activities and associated experienced wellbeing measured in ten-minute intervals over two days by 4817 adults from the 2014/15 UK Time Use Survey. We use entropy balancing to compare carers with a re-weighted counterfactual non-carer group and then apply Oaxaca-Blinder decomposition. The experienced wellbeing gap of 0.066 is the net result of several substantial competing effects of time use. Carers experienced wellbeing would be higher by 0.188 if they had the same patterns and returns to time use as non-carers which is driven by sleep, time stress and alternative characteristics of time use. However, leisure and non-market activities serve to dampen this increase in experienced wellbeing. Initiatives to improve and assess carer wellbeing should pay close attention to how carers spend their time.

The health, economic and social burden of smoking in Argentina, and the impact of increasing tobacco taxes in a context of illicit trade.

Tobacco tax increases, the most cost-effective measure in reducing consumption, remain underutilized in low and middle-income countries. This study estimates the health and economic burden of smoking in Argentina and forecasts the benefits of tobacco tax hikes, accounting for the potential effects of illicit trade. Using a probabilistic Markov microsimulation model, this study quantifies smoking-related deaths, health events, and societal costs. The model also estimates the health and economic benefits of different increases in the price of cigarettes through taxes. Annually, smoking causes 45,000 deaths and 221,000 health events in Argentina, costing USD 2782 million in direct medical expenses, USD 1470 million in labor productivity loss costs, and USD 1069 million in informal care costs-totaling 1.2% of the national gross domestic product. Even in a scenario that considers illicit trade of tobacco products, a 50% cigarette price increase through taxes could yield USD 8292 million in total economic benefits accumulated over a decade. Consequently, raising tobacco taxes could significantly reduce the health and economic burdens of smoking in Argentina while increasing fiscal revenue.

How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?

PURPOSE: Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. METHODS: Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. RESULTS: Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. CONCLUSION: The content of the three instruments appears relevant in an Australian setting. The influence of care recipient's health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers.