Informal caregivers during the COVID-19 pandemic perceive additional burden: findings from an ad-hoc survey in Germany.

BACKGROUND: While the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated. METHODS: A total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020. Questionnaires were used to assess COVID-19-specific changes in the care situation, negative feelings in the care situation, problems with implementation of COVID-19 measures, concerns/excessive demands, loss of support, change in informal caregivers' own involvement in care and problems with provision, comprehension & practicability of COVID-19 information, and to relate these issues to five indicators of care involvement (i.e., being the main caregiver, high expenditure of time, high level of care, dementia, no professional help). Binomial and multiple regression analyses were applied. RESULTS: Across indicators of care involvement, 25.5-39.7% reported that the care situation rather or greatly worsened during the COVID-19 pandemic, especially for those caring for someone with dementia or those usually relying on professional help. In a multiple regression model, the mean number of involvement indicators met was associated with age (ß = .18; CI .10-.25), excessive demands (ß = .10, CI .00-.19), problems with implementation of COVID-19 measures (ß = .11, CI .04-.19), an increase in caregiving by the informal caregivers themselves (ß = .14, CI .03-.24) as well as with no change in the amount of caregiving (ß = .18, CI .07-.29) and loss of support (ß = -.08, CI -.16-.00). No significant associations with the mean number of involvement indicators met were found for gender, educational level, change in the care situation, negative feelings, and provision, comprehension & practicability of COVID-19 information. CONCLUSION: Those caregivers who perceived extensive care burden were those who suffered most during the pandemic, calling for structural support by the healthcare system now and in the future. TRIAL REGISTRATION: This article does not report the results of a health care intervention on human participants.

Caregiving adult children's perceptions of challenges relating to the end of life of their centenarian parents.

BACKGROUND: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents' end of life (EOL), dying and death as well as their own advancing age. AIM: This study aims to analyse the challenges of caregiving adult children regarding their parents' end of life and the related burdens and barriers they report. MATERIAL AND METHODS: Semi-structured interviews were conducted with 13 caregivers following a theory-based and tested guideline. The computer-aided coding and evaluation followed the structured content analysis approach. RESULTS: The analysis showed three main themes: 'Confronting EOL', 'Communicating about death and dying' and 'Assisting in the terminal phase'. The respondents commented on burdensome demands and concerns about the future. Further, a strong underlying presence of intra- and interpersonal conflicts relating to EOL became apparent. DISCUSSION: The results indicate several potential burdens for centenarians' caregiving offspring. They are confronted with a double challenge resulting from the combination of their own advanced age and experiencing the burdens of their parents' very old age. Further, some participants struggled with their own unclear perspective on the future because of the relative but unclear proximity of the parent's death. Multiple conflicts and overlapping conflict dimensions emphasise the potential of the EOL topic to influence the well-being of family caregivers and care recipients. LIMITATIONS: The convenience sample used for the study may cause limitations, for example, the fact that persons with a formally lower educational status are not represented. CONCLUSION: The findings suggest that interventions designed for family-related care situations should include topics like 'Finiteness and grief', 'Communicating about dying and death' and 'Decisions and dispositions at EOL'.

[Action-related resilience in people with longevity-sociological approach]. / Handlungsbezogene Resilienz bei Langlebigen ­ eine soziologische Annäherung.

With increasing longevity, questions about the psychosocial conditions for extraordinary life spans come to the fore. From the field of psychology the concept of resilience is used to describe special capabilities to resist as a personal competence to maintain or regain certain levels of functioning. As such, resilience is seen as a relatively stable personality trait that, however, may forfeit its relevance in old age.The present article, in contrast to the usual phases of life view, adopts a sociological perspective on the entire life span. The rational choice approach is utilized to describe and discuss conditions, foundations, strategies and results of action decisions based on 15 qualitative biographical interviews with centenarians. Resilience in this context is seen as a capacity to act.The results demonstrate that potentials for resilient action persist throughout the entire life span including oldest age but capacities to act are highly context-specific.

[Quality reporting in long-term care facilities-information requirements, search strategies, and information sources for persons in need of care and their family members]. / Qualitätsberichterstattung zur stationären Pflege ­ Informationsbedürfnisse, Suchstrategien und Informationsquellen von Pflegebedürftigen und ihren Angehörigen.

Persons in need of care and their family members should be able to realistically assess and compare the quality of care services. Recent legislation therefore states that the current procedure to assess and present care quality has to be developed further. While quality measurements can be informed by the literature, knowledge on suitable formats for presenting quality information that is suitable for care-receiving persons and their families is highly fragmentary.The "Development of quality reporting in long-term care" project, a cooperation between the Charité, the federal association of the AOK (AOK-Bundesverband), and the Center for Quality in Care (ZQP), provides the current findings on the information requirements of persons in need of care and their family members when choosing a care facility. Aspects related to nursing staff have a particularly high relevance, e. g. respectful behavior of the personnel, well-trained caregivers, sufficient staff density, seldom changes in the personnel of the institution, and thoroughly conducted care that is adjusted to individual needs. These criteria have been given the highest relevance by persons in need of care as well as their family members.The findings hint at the necessity to provide comprehensive and detailed information about the staffing of care facilities in the future: for example, on the staff ratio and qualifications. Apart from that, comprehensive knowledge on formats to present information is urgently needed - taking into account the needs of care-dependent persons and their families and how information can be optimally processed.

Long-term Care Status in Centenarians and Younger Cohorts of Oldest Old in the Last 6 Years of Life: Trajectories and Potential Mechanisms.

OBJECTIVES: A large proportion of the oldest old and centenarians live in long-term care facilities. Although there may be distinct care patterns in centenarians compared with other cohorts of oldest old, the exact development concerning prevalence, length of stay, and factors that are associated with long-term care status in the last years before death is unknown. DESIGN: Longitudinal analyses of health insurance data across 6 years before death. SETTING AND PARTICIPANTS: In all, 1398 institutionalized and noninstitutionalized oldest old [deceased at 80-89 (octogenarians), 90-99 (nonagenarians), or over 100 years of age (centenarians)] from Germany were included. Long-term care status and transition from home care into long-term care over 6 years (34,740 person-quarters). MEASUREMENTS: Dementia, musculoskeletal diseases, multimorbidity, hospital admission, gender, and age at death were derived from administrative data and analyzed using binary generalized estimating equations. RESULTS: Although the initial level of long-term care (6 years before death) was higher among centenarians (65.1% vs 53.6% in nonagenarians; 36.2% in octogenarians), the rate of increase was stronger in the younger cohorts. Distinguishing between long-term care escapers, delayers, and survivors, the proportion of those who escaped, delayed, or survived the entire 6 years of observation in long-term care was 33.4%/40.4%/26.2% in centenarians, 45.0%/45.1%/9.9% in nonagenarians, and 62.7%/33.7%/3.6% in octogenarians. Age, hospital admissions, and dementia were positively associated with being in long-term care, whereas musculoskeletal disorders were negatively associated with long-term care. The association with dementia was significantly weaker in centenarians. CONCLUSIONS: For centenarians, although they are more often in long-term care, the transition rate to long-term care progressed more slowly than the rates of the younger comparison cohorts of oldest old. The high proportion of long stays of centenarians in long-term care facilities require different concepts of long-term care.

[Centenarians preparing for the end of life?] / Hundertjährige in Vorbereitung auf das Lebensende?

BACKGROUND: The population of centenarians has grown immensely in Germany but has yet hardly been considered in research on dying and death. Due to their very old age centenarians are especially intensively confronted with the challenge of the end of life. OBJECTIVE: The aim of this study was to analyze how centenarians handle the existential challenge of the end of life and which aspects are especially significant for them. Conclusions drawn from this analysis were used to identify factors to improve the needs-based provision of care. MATERIAL AND METHODS: Trained interviewers interrogated 15 centenarians living in Berlin using semi-structured interviews based on theoretically developed and tested guidelines. Subsequently, the interviews were transcribed, computer coded and analyzed following the method of the qualitative content analysis according to Kuckartz. RESULTS: In the categories "experience with dying and death" and "preparing for the end of life" it was shown to be significant that respondents often referred to the dying of others with respect to their worries and wishes at the end of their life. Additionally, the subcategories "putting things in order", "settling provision of care" and "having conversations" were shown to be highly relevant for the participants in the study. CONCLUSION: Decisions related to care in the process of dying, for example by advance directives, arrangements for inheritance and funeral as well as communication about dying and death, are central needs of centenarians when preparing for the end of life. There is sometimes considerable need for professional support and protection.