Supporting Resilience of Older Adults with Cognitive Decline Requires a Multi-Level System Approach.

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.

[Symposium The future of informal care]. / Symposium De toekomst van de informele zorg.

Due to the reform of long term care in 2015, there is growing concern about whether groups at risk receive the care they need. People in need of care have to rely more on help from their social network. The increased need for informal care requires resilience and organizational skills of families, but also of volunteers, professionals and employers. What does this mean for the provision of informal care in the next decennia? The symposium 'The future of informal care', organized on January 26 2017 by the National Institute for Social Research and the Institute for Societal Resilience of the Vrije Universiteit, addressed possible answers to this question. In her inaugural speech Alice de Boer discussed social inequality as possible determinant and outcome of informal care. Some conclusions:Until 2050 the absolute number of 75-plus doubled to about 3 million persons, but the number of informal caregivers will decrease. In addition to the importance of social and economic resources (the 'have & have-nots'), the ability to arrange care (the 'can & can-nots') gains importance.Almost half of the older employers provides informal care just before retirement. Flexibility in working hours and work location facilitates combining work and care, but about half of the employers indicates that partial retirement and working at home are no options.Informal caregivers and professionals often provide care from comparable perspectives and identities. Addressing similarities rather than differences improves their chances for collaboration.The number of adult children providing household care to older parents increased between 2002 and 2014. This suggests an increase in family solidarity, but current reform policies may increase the gender inequality in caregiving families.Spouses and children remain primary caregivers in the future, preferably supported by many different types of caregivers. Not everybody has the capabilities to organize and direct such a large care network.Providing informal care increases the risk for overburden and absence at work or education. Informal caregivers at risk remain, also in the future, women, spouses, migrants, and younger carers.

Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work.

Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.

Eligibility for long-term care in The Netherlands: development of a decision support system.

In The Netherlands, eligibility for subsidised long-term care services is assessed by regional governmental assessment agencies. We examined which factors predict eligibility for eight long-term care alternatives, ranging from a variety of arrangements for care at home to admissions to residential and nursing homes. Data were drawn from the records of a sample of the regional assessment agencies, mostly during the year 2000. The model shows that not only disease and disability but also age, household composition, current housing situation, and use of health-care services determine the choice between the long-term care alternatives. On the basis of this model, we developed a decision support system. This system predicts eligibility for long-term care alternatives on the basis of applicant characteristics, and can support needs assessors in making decisions on the eligibility of individual applicants. It is used for standardization of intake processes and development of protocols for needs assessors. At the population level, it may provide information for managers and policy-makers on the distribution of demand for long-term care in the near future.

Client demands and the allocation of home care in the Netherlands. A multinomial logit model of client types, care needs and referrals.

The purpose of this paper is to estimate the volume and composition of referrals to home care on the basis of applicant characteristics. The relationships between the background and care needs of applicant groups on the one hand and the referral of home care packages on the other, are studied by means of a multinomial logit model. The model is estimated on the basis of more than 7000 requests for home care in the northern part of the Netherlands. Home health care institutions have to deal with clients who arrive from many different branches of the health care system. As a result the services or products provided by home health care institutions are characterized by wide variation. In the modeling emphasis has, therefore, been placed on the differentiation of clients and products. We find for instance that elderly chronically ill applicants have a greater chance of being referred for domestic help only, while applicants with psychosocial disorders are more liable to be offered packages that include social support. Patients discharged from hospital have a greater chance of a referral to domestic help only when they are slightly disabled, and are more likely to be offered packages including physical care when they are more disabled. The model has a range of policy applications in assessing the impact of changes in the health care system on the volume and structure of the demand for home care services. Examples are presented of the consequences of the ageing population and earlier discharge from hospitals on demand for home care packages.

When work and satisfaction with life do not go hand in hand: health barriers and personal resources in the participation of people with chronic physical disabilities.

People with chronic physical disabilities participate less in both paid and voluntary work and are less satisfied with their lives than people without health problems. Governments and scientists have suggested that participation in employment is the main road to well-being. We analysed national survey data on the participation in work and satisfaction with life, comparing people with a chronic illness and a physical disability (n=603) to people with a chronic illness but without a physical disability (n=1199) and the general population (n=6128) in the Netherlands. The results show that the relationship between happiness and work is different for people with a chronic illness and a physical disability, as compared to the other two populations. Fewer people with a chronic illness and disability were categorized as 'satisfied people with work' (i.e. participating in work and satisfied with their life), while most people belonged to a group of 'satisfied people without work' and, surprisingly, not to the expected group of 'dissatisfied people without work'. In order to explain this exceptional distribution we modelled satisfied participation in work as an outcome of a balance between personal resources and barriers. By means of discriminant regression analysis, we identified the severity of motor disability as the main barrier, and education level and age, as the main resource factors that distinguish between 'satisfied people with work' and others among the group of people with a chronic illness and a physical disability.

Are persons with physical disabilities who participate in society healthier and happier? Structural equation modelling of objective participation and subjective well-being.

In many countries, governments pursue a policy of offering persons with disabilities greater opportunities for participation in society, based on the assumption that this will also improve their subjective well-being. Currently, however, it is not known whether this assumption is valid. In this study we relate the objective participation and the subjective well-being aspects of both disabled and non-disabled persons to an array of social and health-related determinants. Linear structural equation modelling of data of a sample selection of the Dutch population is analysed. The sample size is 5,826, including 642 respondents with physical disabilities. In terms of objective participation, the persons with disabilities are at a greater disadvantage as regards labour participation than is the case for social and cultural participation. When it comes to subjective well-being, we find that the persons with disabilities are more likely to lag behind in perceived physical health than in mental health and happiness. In a multivariate model relating objective participation to subjective health and happiness, correlations are much weaker than expected. It is striking to find that participation, perceived health and happiness are much less closely related than is often assumed. Their determinants differ widely in nature and strength. The empirical model leads to rejection of the hypothesis that higher participation by the persons with disabilities is associated with higher subjective well-being.