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.

Development and validation of a questionnaire assessing the perceived control in health care among older adults with care needs in the Netherlands.

PURPOSE: In response to the increased emphasis placed on older people's self-reliance in many welfare societies, we aimed to develop and validate a measurement instrument, assessing perceived control in health care among older adults with care needs. The target group consists of older people who live (semi-)independently and use professional health care, with or without informal care. METHODS: Phase I (development) of the study consisted of the construction of the instrument based on the input from a variety of stakeholders. Phase II (validation) entailed a quantitative study in a sample of 247 respondents selected from the Longitudinal Aging Study Amsterdam, to assess the instrument's construct validity (structural validity and hypotheses testing) and reliability (internal consistency). RESULTS: The questionnaire consists of 29 items, related to organizing professional care, communication with care professionals, health management in the home situation, planning (more) complex care in the future, and perceived support from the social network. Based on a factor analysis, we identified three subscales: (I.) 'perceived personal control in health care'; (II.) 'anticipated personal control regarding future health care'; and (III.) 'perceived support from the social network,' with internal consistencies varying from Cronbach's α = .71 to .90. Factor I was associated with mastery, self-efficacy, self-esteem (r = .31-.35) and factor III with social loneliness (r = -.42). Factor II correlated less strongly with mastery, self-efficacy, and self-esteem (r < .30). CONCLUSION: Our questionnaire revealed sufficient construct validity and internal consistency. The instrument provides a basis for further quantitative research regarding control, especially in relation to health care-related outcomes.

[Discussion between informal and formal caregivers of community-dwelling older adults]. / Overleg tussen mantelzorgers en formele hulpverleners van thuiswonende ouderen.

Current Dutch policy on long-term care is aimed at a stronger connection between formal home care and informal care. We examined if formal and informal caregivers of community-dwelling older adults discuss the care and whether this is related to characteristics of the older adult, the care network and the individual caregivers. Data are derived from 63 community-dwelling older adults, including their health, their perceived control of the care and their care network. In addition, 79 informal and 90 formal caregivers are interviewed on their motives and vision on caregiving. The 112 dyads between those formal and informal caregivers are the units of analysis in the current study. Bivariate analyses reveal that informal caregivers are more likely to discuss the care with formal caregivers when they are residing with the older adult, when they provide a lot of care and/or when they are strongly motivated to keep the older adult at home. This is particularly the case when the care demands are high. Characteristics of the formal caregivers were not important. In conclusion, discussion of care between non-resident informal caregivers and formal caregivers is not self-evident and requires more effort to be established.

[Positive experience through informal care: construction of a scale]. / Positieve ervaringen door mantelzorg: constructie van een schaal.

An 8-item scale has been developed to measure positive experiences by informal caregivers, the Positive Experiences Scale (PES). The PES is a unidimensional hierarchical Mokkenscale which varies from intrinsic satisfaction and relational enhancement to improvement of competence and social enhancement. The scale has a satisfactory Loevinger's H-value (0.37) and reliability (0.74). Furthermore, satisfying H-values are found for large groups of informal caregivers, such as carers for the elderly, the chronically ill, partners, parents and people who live in a care facility. For informal caregivers of people with dementia or mental impairments, two items do not uphold ('I received appreciation for the care I've been giving' and 'the help brought me and my family and friends closer together'. For these groups a 6-item scale is advised. Solely for informal caregivers of people with psychological impairments, the scale as a whole does not uphold. Further research will have to determine how these caregivers derive positive experiences from caregiving. The PES is recommended because of its psychometric qualities and its usefulness in different populations of informal caregivers.

Exploring experiences and health-related quality of life of caregivers of patients who start home dialysis: study protocol for a prospective, multicentre cohort study.

INTRODUCTION: Starting dialysis not only has a major impact on the life of patients but also on their informal caregivers. Previous research shows greater burden and lower quality of life among caregivers of dialysis patients compared with the general population. Unfortunately, the evidence on the course of both positive and negative experience in caregivers of incident dialysis patients is scarce. Furthermore, well-designed, prospective, multicentre studies comparing caregiving of home dialysis patients with in-centre dialysis patients are lacking. This paper proposes a protocol to assess the trajectory of experiences (both positive and negative) and quality of life of caregivers of home dialysis patients compared with caregivers of in-centre dialysis patients. METHODS AND ANALYSIS: This paper presents a protocol for a prospective, observational, multicentre cohort study which extends the ongoing Dutch nOcturnal and hoME dialysis Study To Improve Clinical Outcomes (DOMESTICO). This study will include at least 200 adult caregivers of patients who start dialysis therapy and have been included in the DOMESTICO study. Positive experiences of the caregivers will be the primary outcome parameter of this study, and negative experiences and health-related quality of life the secondary outcome parameters. Required support will be investigated as an exploratory finding. Outcome parameters will be assessed at baseline, and at 6 and 12 months after start of dialysis using validated questionnaires. ETHICS AND DISSEMINATION: Ethical approval for this study has been obtained from the Medical Research Ethics Committee of the Amsterdam University Medical Centre. The results of this study will be disseminated by publication in a peer-reviewed journal and through presentations at conferences and seminars.

Self-reported suicidal behavior in Dutch secondary education students.

From nearly 10,000 secondary education students in The Netherlands, aged 14-20, data were collected on the prevalence of suicide attempts and recent thoughts about suicide and death. In this sample, 3.3% of the girls and 1.3% of the boys indicated that they had attempted suicide. The youngest students already reported as many attempts as the eldest, which is remarkable. Differences between boys and girls and between various types of schools were not substantial. We also found that 5.2% of the girls and 2.2% of the boys currently had thoughts of suicide. Again, there was no substantial difference as regards sex, type of school, and age. There was, however, a (small) difference between boys and girls concerning thoughts of death--namely, 9.3% of the girls versus 4.8% of the boys.

[Social-economic inequality in mortality among older mem amd women. Research on the role of health, life style, parental socio-economic status and psychosocial conditions]. / Sociaal-economische ongelijkheid in sterfte bij oudere mannen en vrouwen. Een onderzoek naar de rol van gezondheid, leefstijl, ouderlijke sociaal-economische status en psychosociale condities.

This article describes to what degree socio-economic differences exist among community living older men and women, and to what degree these differences are to be explained by health, behaviour, childhood and psychosocial conditions. The data are available from 1427 men and 1503 women (aged 55-85), participating in the Longitudinal Aging Study Amsterdam (LASA) in 1992/1993. As indicators of socio-economic status (ses) we used the highest level of education and net monthly income. Age-adjusted mortality risks for men and women with low income and for men with a low level of education are about 1.5 times as high as for to the persons with high income and educational level. Among men, but not among women, the difference in mortality risk between low and high status persons remains after adjustment for age, health status, and several risk factors. Differences in lifestyle, parental ses and psychosocial characteristics explain little to nothing of the age-adjusted ses-differentiation in mortality. It is concluded that ses-inequalities in mortality are present among Dutch men and, to a lesser extent among women, until high age, and are partly explained by the relatively large health problems of the lower status group.

Perceived control in health care: a conceptual model based on experiences of frail older adults.

Frail older adults are increasingly encouraged to be in control of their health care, in Western societies. However, little is known about how they themselves perceive control in health care. Therefore, this study aims to investigate the concept of health care-related perceived control from the viewpoint of frail older adults. A qualitative interview study was conducted following a Grounded Theory approach. Thirty-two Dutch frail older adults, aged 65 and over, participated in 20 in-depth interviews (n=20) and three focus group discussions (n=12). Data were analysed according to techniques of coding and constant comparison. From this analysis constituting factors of perceived control emerged, providing elements of a conceptual model. Perceived control reflects the feeling or belief that health care is under control, which is constituted by five, either internal or external, factors: (I) self-confidence in organising professional and/or informal care, (II) self-confidence in health management in the home setting, (III) perceived support from people in the social network, (IV) perceived support from health care professionals and organisations, and (V) perceived support from (health care) infrastructure and services. Therefore, the concept does not only consist of people's own perceived efforts, but also includes the influence of external sources. Our conceptual model points out what external factors should be taken into consideration by health care professionals and policy makers when enhancing older people's perceived control. Moreover, it can serve as the basis for the development of a measurement instrument, to enable future quantitative research on health care-related perceived control among older adults.

Cosmic transcendence, loneliness, and exchange of emotional support with adult children: a study among older parents in The Netherlands.

Gerotranscendence defines a shift in meta-perspective from earlier materialistic and pragmatic concerns, toward more cosmic and transcendent ones in later life. Population-based studies that have empirically examined this concept using Tornstam's gerotranscendence scale, highlight cosmic transcendence as a core component, which includes a sense of belongingness with past and future generations. Such generative concerns may increase expectations regarding the quality of the bond with one's children in later life. This study examined whether the association between emotional support exchanged with children and feelings of loneliness later in life varied by the degree of cosmic transcendence of the older parent. Data from 1,845 older parents participating in a population-based study living in The Netherlands were analyzed from the 1995/1996 cycle of the Longitudinal Aging Study Amsterdam. Interviews included self-report measures of cosmic transcendence, loneliness, emotional support exchanged with children, health indicators, and marital status. Results indicated that a negative association between loneliness and level of emotional support exchanged with children was more pronounced among older parents with higher cosmic transcendence scores, in particular among the married. It is argued that cosmic transcendence reflects a sense of generativity and an increased emotional dependency on children in later life. Under favorable social conditions (supportive relationships with children and being married) cosmic transcendent views had a positive impact on social well-being in later life. When children no longer met emotional needs of older parents, cosmic transcendence increased feelings of loneliness.

Sex differences in depression after widowhood. Do men suffer more?

BACKGROUND: This study focuses on sex differences in depression of the widowed. Previous research showed different results in sex differences and in depression after bereavement. We assessed the effects of widowhood on depressive symptoms for men and women and examined whether environmental strain like social support, finances and housekeeping concerns explain these effects. METHODS: Data were used from a large community-based study of older people in three regions of the Netherlands. Our study sample consists of 2626 widowed and married subjects in the age group of 55-85 years. Depression was measured using the CES-D scale; the various strains were obtained by structured interviews. Multiple linear regression, performed for men and women separately, were used. RESULTS: The results show that widowhood is associated with higher levels of depressive symptoms and that this association is stronger for men than for women. The effect of widowhood is mediated by different types of environmental strain for men and women. However, a strong direct main effect of widowhood on depression remains. The difference in depression rates between men and women is most evident among those widowed for a longer period of time. CONCLUSIONS: It appears that, over time, women adapt to widowhood more successfully than men. From a clinical point of view this is important, as it suggests that men who remain alone after losing their partner are at a higher risk of developing symptoms of chronic depression.

The end of life: informal care for dying older people and its relationship to place of death.

OBJECTIVE: This study examined the features of informal end-of-life care of older people living in the community and the association between informal care characteristics and dying at home. METHODS: Retrospective data were obtained from interviews and self-administered questionnaires of 56 persons who had been primary caregivers of older relatives in the last three months of their lives. RESULTS: Results showed that informal caregivers of terminally ill older people living in the community provided a considerable amount of personal, household, and management care. Secondary informal caregivers and formal caregivers assisted resident primary caregivers less often than nonresident primary caregivers. Primary caregivers who felt less burdened, who gave personal care more intensively, and/or who were assisted by secondary caregivers, were more likely to provide informal end-of-life care at home until the time of death. CONCLUSIONS: Our study showed that informal care at the end of life of older people living in the community is complex, since the care required is considerable and highly varied, and involves assistance from secondary informal caregivers, formal home caregivers as well as institutional care. Burden of informal care is one of the most important factors associated with home death. More attention is needed to help ease the burden on informal caregivers, specifically with regard to resident caregivers and spouses. Since these resident caregivers were disadvantaged in several respects (i.e., health, income, assistance from other carers) compared to nonresident caregivers, interventions by formal caregivers should also be directed towards these persons, enabling them to bear the burden of end-of-life care.