A qualitative study of community elders\u2019 perceptions about the underutilization of formal maternal care and maternal death in rural Nigeria

Background and objectivesThe progressive character of dementia usually leads to a continuously increasing need for support. There is some evidence of late use of professional support during the disease course. We aim to provide an overview of aspects influencing access and use of formal care in dementia from the perspective of health and social care professionals. Additionally, the perspectives of professionals and people with dementia/informal carers will be compared.MethodsWe conducted a scoping review with a systematic literature search in Medline via Ovid in January 2019 and updated this in April 2020 and in May 2021. Publications were considered eligible when focusing on influencing aspects of the use of formal care or support for people with dementia in an outpatient setting from the perspective of health professionals. Included publications were critically appraised using the Mixed Method Appraisal Tool. We identified aspects of access to and use of formal care and support services. A consultation exercise with three specialised trained dementia care nurses was conducted to validate our results.ResultsWe included 29 studies: n = 20 qualitative, n = 6 quantitative-descriptive, n = 3 mixed-methods. Various support services were identified, but a focus was on services for diagnostic and treatment of dementia. A wide range of influencing aspects (n = 15) describe the access to and use of formal care services. Aspects related to the complexity and structure of the healthcare system and the competence of professionals were frequently addressed. Second, attitudes and expectations of professionals, and experiences with people with dementia and their informal carers were identified. The dementia care nurses highlighted the importance of coordinated care to enhance dementia-specific competencies.ConclusionsHealth and social care professionals still describe barriers in accessing and using formal care due to various influences. Ways to improve access to and use of professional support in dementia should consider individual and system-level activities, as well as overarching aspects. Important topics are therefore education and training of professionals and coordinated dementia-specific care to provide adequate support for people with dementia and their relatives. Several professions may be involved in this increasingly important field, e.g., nurses with a dementia-specific training like dementia care nurses.

Introduction Life expectancy (LE) is increasing worldwide, while there is a lack of information on years of home-based formal care use among the aging population. The current study examined the trend of LE for formal care use among Norwegian older adults over three decades 1995-2016 in Norway. Methods A total of 25,263 participants aged 70+ were included in the Trøndelag Health Study (HUNT) survey 2 (1995-97), 3 (2006-08), and 4 (2017-19). Participants reported the use of formal care services including practical help and home nursing. The prevalence of both service uses was standardized to the Norwegian population by age, sex, and education using post-stratification weights. LE was estimated using National mortality data by age, sex, and education combined with the formal service use data using the Sullivan method to estimate expected years with and without basic services and nursing services in Norway. Results During 1995/97-2017/19, the service use decreased from 22.6% to 6.2% for practical help and 6.4% to 5.5% for receiving home nursing. LE at age 70 from 1995 to 2016 increased 3.4 years in men, and 2.4 years in women. Expected years receiving practical help decreased by 1.1 years (2.6 to 1.5 years) in men and 1.6 years (4.5 to 2.9 years) in women, while LE for home nursing increased from 0.7 years (0.7 to 1.4 years) in men and 1.3 years (1.4 to 2.7 years) in women. Conclusions Years receiving home nursing increased during 1995-2016, while years receiving practical help care decreased in the older Norwegian population.

Several studies in high-income countries (HIC) have shown that the experience of potentially traumatic events (PTE) is associated with increased health care service use. Information on patterns of health care use and expectations by this group of individuals can be useful for providing patient-centric care and improving health system accountability and responsiveness. Despite the necessity of this work, less research has been conducted in low and lower-middle income countries (LIC; LMIC), especially in countries with a recent history of conflict, which is problematic for several reasons. Experience of PTEs, especially assaultive violence and injuries, may be higher in LICs and LMICs compared to HICs, which may lead to poor physical and mental health and increased demand for health care services. The formal health care system in LICs and LMICs, especially in those countries emerging from conflict, however, may be in a process of renewal and improvement. Many necessary health services may remain unavailable for several years during this process, accountability is often lacking, and the health system may not have the capacity to respond to health care needs. Likely stemming from this lack of formal care, many LICs and LMICs have substantial informal care markets, and most individuals view both systems as complementary, despite the complete lack of regulation and training of informal care providers compared to formal care providers. In order for the formal care system to improve accountability and responsiveness, studies that assess the relation between PTE experience and use of both informal and formal care as well as patient preferences for formal care are critical. Such studies would shed light on where individuals with PTE experience are seeking care and what they expect from formal care. I conducted three investigations in order to better understand the association between experience of PTEs and health care service use in LICs and LMICs. In chapter one, I designed a systematic review of studies published on the topic using data from LICs and LMICs. I found only two studies that met eligibility criteria and suggested several considerations that future studies make, including the use of validated scales to measure PTE experience and the importance of including informal care use in this research. In chapter two, using cross-sectional, population-based data on adults from Nimba County, Liberia, I assessed the relation between lifetime PTE experience and formal and informal care service use. Lifetime PTE experience increased both formal and informal care use and most persons who experienced PTEs likely complemented their formal use with informal use. One exception to this latter finding was a small group of individuals who used no informal care, among whom a higher number of PTEs was associated with using formal care. In chapter three, using data from a discrete choice experiment carried out on the same sample of adults from Nimba county, I found that those with increased experience of PTEs had a higher preference for a facility that offered a high quality exam, had a lower preference for respectful treatment, and a higher preference for seeing a traditional healer instead of using the facility to obtain care when sick. Most individuals with increased experience of PTEs used both the informal and formal care system to meet their health care needs. Their reliance on the informal care system may be partially explained by symptoms of psychopathology, poor physical health, easier access to medications, and dissatisfaction with the formal care system. Higher preferences for a high quality medical exam and the traditional healer compared to formal clinics among those with high PTE experience suggest that the expectations of those arguably most in need of health care may not currently be met by the formal care system. Considering that informal care providers are untrained and unregulated, they are unlikely to provide adequate health care that can decrease disease burden in the population. It is likely that use of informal care reflects inadequate formal care; the formal care system must become more responsive to the needs of those with PTEs. There are several factors related to the PTE experience - health care use relation that merit further attention as well as several improvements that the formal care system should consider. One factor is whether mental health is a central reason why those with PTEs seek informal care. Currently, formal care providers in Liberia are unable to adequately treat mental health problems, which may be one reason why individuals rely on informal care providers. Whether this is a determinant of informal care use should be assessed by future studies as, if this is the case, then any referral program in which informal providers refer patients to formal care may not prove successful. Training formal care providers in treating mental health problems should be implemented, but another aspect that merits further research is whether informal care providers like traditional healers can be trained to screen for mental health problems or provide limited counseling services for individuals prior to giving referrals to alleviate some of the burden on formal care. Another aspect of future research should compare the access, perceptions, and expectations of both care systems of those who use only formal care to those who use both. Identifying whether these individuals have better access to formal care, whether they view formal care differently, or whether they have less access to informal care may improve formal care system responsiveness. Lastly the government of Liberia should continue improving access to the nearest facility, training providers to perform better exams, and improving the quality of clinics, including increasing the availability of medications and decreasing wait times, as these changes will likely increase use of formal care services by those with PTEs as well as the larger population.

Using data from the Survey of Health, Ageing and Retirement in Europe (SHARE), the aim of this study is to infer the impact that the Spanish System for Personal Autonomy and Dependency might have on formal and informal care use through the performance of logit random-effects regression models by applying a differences-in-differences approach. Dependency levels were created depending on the limitations on the performance of instrumental and basic activities of daily living. Formal care consisted on home help and nursing home care, whereas informal care referred to the reception of care by relatives or friends, from inside or outside the household. Additional covariates, such as socioeconomic characteristics and health status variables, were included. Our results show that the negative dependency effects on informal care reception are intensified after the implementation of the Dependency Act, as the interaction between being a moderate dependent and wave 4 (year 2010) is significant and positive. In case of formal care, the joint assessment of the implementation of the DA and the different dependency levels did not report a significant effect, although they were significantly associated with formal care use independently. Bearing in mind the demographic ageing, our results highlight the need for the efficient planification of long-term care systems and social support services, especially for informal caregivers, in order to satisfy the care demands and reduce the caregiving burden.

To examine the relationship between individual and regional levels of sekentei and attitudes toward care services in the general Japanese population. A cross-sectional survey was conducted in January and February 2005 using a mailed-in self-administered questionnaire. Participants were 4735 community residents aged 20-75 years living in 23 regions in the city of Koka in Shiga Prefecture. Questions encompassed demographic data, attitudes toward the use of formal care services and the Sekentei Scale. The regional variable of sekentei was constructed by aggregating the individual sekentei scores within elementary school districts. Multilevel logistic regression analysis was conducted to assess the association between individual and regional sekentei and attitudes toward care services. A total of 2264 questionnaires were analyzed. Approximately 16% of respondents were willing to use formal care services. Multilevel analysis showed that lower individual sekentei was associated with the willingness to use formal care services among both men and women (odds ratio [OR] = 0.96, 95% confidence interval [CI] = 0.93-0.99 in men; OR = 0.96, 95% CI = 0.92-1.00 in women). Among men, the negative association between regional sekentei and the willingness to use formal care services was marginally significant (OR = 0.69, 95% CI = 0.48-1.01) as was the interaction between individual and regional sekentei levels. These results indicate the importance of assessing not only the individual sekentei level but also the sekentei level in different regions to develop strategies for the allocation of care resources.

Determinants of the use of ambulant social care by the elderly

BackgroundPrevious findings indicate that people with dementia and their informal carers experience difficulties accessing and using formal care services due to a mismatch between needs and service use. This mismatch causes overall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background and methods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practice development in finding timely access to formal care for community-dwelling people with dementia and their informal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the use of formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Compare these across European countries, 4) Understand the costs and consequences of formal care services utilization in people with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formal care services across European countries.MethodsIn a longitudinal cohort study conducted in eight European countries approximately 450 people with dementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we will closely monitor the process of finding access to formal care. Data on service use, quality of life and needs will be collected.DiscussionThe results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledge about enabling and predisposing factors regarding access to care services, as well as its costs and consequences, can advance the state of the art in health systems research into pathways to dementia care, in order to benefit people with dementia and their informal carers.

Formelle und informelle Unterstützung der häuslichen Pflege bei Demenz: Eine Mixed-Method Studie im Rahmen des Actifcare Projekts

Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

The Use and Costs of Formal Care in Newly Diagnosed Dementia: A Three-Year Prospective Follow-Up Study

In the United Kingdom, people with Parkinson disease (PD) and atypical parkinsonism will require more support with their care needs as the condition progresses. There are few data on the nature of care input required and the amount of informal and formal care needed by people with PD to enable them to remain within their own home. All people with moderate to advanced stage (Hoehn and Yahr III-V) idiopathic PD and atypical parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service and living in their own home were invited to take part in The Northumbria Care Needs Project, a 10-year prospective longitudinal study. At baseline, data regarding formal (paid) personal and domestic care input and use of respite care, sitting services, and day centers were collected. We also collected data on patient cognitive disability, functional disability, and disease severity and informal carer tasks. Of 162 people with PD included in the study, only 25.2% accessed formal domestic care and the same proportion formal personal care. In contrast, 80.2% identified an informal carer who helped with these tasks. Despite greater level of functional disability in those with an informal carer, levels of formal personal care input were similar to those with and without a formal carer. Levels of formal domestic carer input were higher in those without an informal carer. Use of formal care services was relatively uncommon in our cohort and much of the burden of caring appears to be being met by informal carers.

ObjectivesThis study aims to explore the effect of past alcohol consumption frequency on formal and informal long-term care (LTC) use in old age and explore the different channels through which it may affect LTC use. MotivationThe existing literature has mainly focused on risk factors associated with a nursing home entry, but this evidence is outdated, not UK-focused, and does not look into other types of care, such as informal care. The results of this study will help in modelling the future demand for various types of care and the corresponding public spending. MethodsWe use the English Longitudinal Study of Ageing (ELSA) (2002–2017) dataset to conduct longitudinal, individual-level analysis. We explore how the previous frequency of alcohol consumption affects formal and informal care use. We focus on people aged 65 and over with no previous LTC use and run regressions with and without instrumental variables (IV) to estimate how alcohol consumption patterns in the previous wave (2 years before) affect formal and informal care use. For IV regressions, we use the polygenic score for alcohol use, available for a subsample of ELSA respondents, as an instrument while also accounting for sociodemographic characteristics, lifestyle choices, and health conditions. ResultsThe main IV estimates suggest that frequent alcohol consumption has a weakly significant positive effect on the onset of formal LTC care use compared to none/rare drinking. This relationship diminishes and is not statistically significant when we directly control for health status. We find no statistically significant effect towards informal LTC use. These results contrast with the estimates without IV, which suggest that frequent alcohol consumption is negatively associated with informal care use and no or weakly negative association with formal care use. DiscussionOur findings suggest that unobserved confounding is important when studying the relationship between alcohol consumption and LTC. We hypothesise that primarily alcohol effects LTC through its adverse effect on health. In addition, unobserved factors like preferences towards seeking care, social behaviour may be related to alcohol consumption and affect access to care. We speculate alcohol may have a damaging effect on personal relationships and could indicate the burden eventually falling on formal care. In as far as the polygenic score IV can account for unobserved preference-behaviour differences, the results (weakly) support the hypothesis that these latter processes are relevant, especially for informal care use.

This study examines whether receipt of cash-for-care (CFC) benefits promotes or displaces family-based informal or, conversely, formal long-term care use. Utilizing cross-national data from four waves (2015–2021) of the Survey of Health, Ageing, and Retirement in Europe (SHARE) covering Austria, Belgium, France, and Germany, generalized linear models — accounting for variations in granting of these benefits — are applied. With CFC having become increasingly widespread in those traditionally conservative-corporatist welfare states in Continental Europe, this study provides novel insights into the role of CFC and its impact on care use, while also revealing persistent country-specific heterogeneity. The results provide robust evidence that CFC facilitates informal caregiving, especially in Austria and Germany. However, identification using plausible exogenous variation in the generosity in granting care allowances across waves, countries, and regions reveals that the same effect does not apply to formal care. In contrast, the findings suggest that CFC may discourage formal care use. Yet, significant cross-country differences emerge, with Germany standing out as the only country where CFC incentivizes both informal and formal care use – including their combination – while also mitigating potential unmet needs. Offering policy-relevant insights on how to address emerging challenges resulting of demographic aging, evolving care needs, and cost control, this study highlights the crucial role of the specific design of the CFC scheme, particularly with respect to access and benefit allocation, in shaping the care mix.

Background: Dementia is a public health priority with a dramatic social and economic impact on people with dementia (PwD), their caregivers and societies. The aim of this study was to contribute to the knowledge on how utilization of formal and informal care varies between Sweden and Italy. Methods: Data were retrieved from two trials: TECH@HOME (Sweden) and UP-TECH (Italy). The sample consisted of 89 Swedish and 317 Italian dyads (PwD and caregivers). Using bivariate analysis, we compared demographic characteristics and informal resource utilization. Multiple linear regression was performed to analyze factors associated with time spent on care by the informal caregivers. Results: Swedish participants utilized more frequently health care and social services. Informal caregivers in Italy spent more time in caregiving than the Swedish ones (6.3 and 3.7 h per day, respectively). Factors associated with an increased time were country of origin, PwD level of dependency, living situation, use of formal care services and occupation. Conclusions: Care and service utilization significantly varies between Sweden and Italy. The level of formal care support received by the caregivers has a significant impact on time spent on informal care. Knowledge on the factors triggering formal care resources utilization by PwD and their caregivers might further support care services planning and delivery across different countries.

BackgroundA comprehensive understanding of subgroups of community-dwelling older adults and their long-term care (LTC) utilization can help to promote equality in the long-term services and support system. Dependency and household characteristics were found to affect the LTC utilization of homebound older adults. However, few studies considered the typologies of dependency of older populations according to co-occurring limitations, and little is known about differences in LTC use among elderly of typologies of dependency under distinct household conditions.MethodsWe aimed to identify typologies of dependency of older adults living at home and explore the disparities in formal care and informal care use among typologies of dependency by income and living situation. In this cross-sectional study, we used the public long-term care insurance (LTCI) database of Yiwu, Zhejiang Province, China, and included 1675 individuals aged ≥ 60 years living at home. Cluster analysis was conducted to determine typologies of dependency among older adults. A two-step multilevel analysis was used to examine disparities in formal and informal care use related to household income and living status among typologies of dependency.ResultsSeven dependency clusters were identified. Pro-wealthy inequalities in both formal and informal care use were found in the least dependent cluster and the limited-locomotion cluster. Pro-poor inequalities in formal care use were found in the fully dependent cluster without impaired vision and the cluster with intact continence and vision. Living with family members was positively associated with receiving formal care for the fully dependent cluster. Older adults in most clusters were more likely to use informal care when living with family members, except for the least dependent cluster and the limited-locomotion cluster.ConclusionsOur findings suggest that household inequalities in LTC use varied among typologies of dependency of older adults, which may provide insights for researchers and policymakers to develop tailored LTC and targeted LTCI programs for older adults living at home and their family caregivers, considering both typologies of dependency and household characteristics.