Carers’ distress

Older individuals prefer to continue living in their own homes maintaining their familiar environment keeping their social relations and living habits, instead of threat of loss of autonomy and independence through transition to nursing home (NH), especially if they are in need of care and belong to the oldest-age group. Fewer than half of NH residents reported having a good quality of life. Abuse of elder people in NHs is still a serious problem and most of the affected persons are afraid of being admitted to a NH (Cooper et al., 2008; May et al., 2019). By an arrangement of formal or informal home care or a combination of both, affected persons and their relatives increasingly successfully prevent or delay nursing home placement (NHP), so that over the past decades the social structure of the group of NH residents has been changed: mean age at entry has increased, the length of residence has shortened, and a substantial increase in need of care can be observed before transition to a NH (Schneekloth and Wahl, 2007). An admission can often no longer be prevented, if (a) no potential caregiver is available –mostly in case of widowhood, and if no other relative of the second or third generation is attainable; (b) when the necessary caregiving time and effort exceed the capabilities of the informal caregiver, that is, in case of severe impairment of cognitive or functional status, or a disease in its terminal phase which require 24/7 care; or (c) if the adjustment to a serious adverse event such as the death of the spouse or the recovery from a severe disease does not succeed sufficiently (Luppa et al., 2012a). Rephrasing, if a person in need of care suffers from severe mental, cognitive, and/or functional impairment, the likelihood of a transition to a NH increases significantly if an adequate support or an appropriate assistance in the requirements of daily living is neither available nor organizable (Luppa et al., 2012b). In this regard, dementia has been shown as the main cause for institutionalization in the elderly (Aguero-Torres et al., 2001). Currently, there are about 50 million people with dementia in the world, with 10 million new cases of dementia every year (World Health Organization, 2017). The total number of people with dementia is projected to reach 82 million in 2030 and 152 million in 2050 (WorldHealth Organization, 2017). Themajority of them are cared for by relatives in the community (World Health Organization, 2012). It has been shown that these family carers that care for individuals with dementia perceive significant higher distress than caregivers that care for individuals without dementia developing more depressive symptoms and physical problems (Pinquart et al., 2003). And caregivers who are heavily burdened may opt for a transition to a NH of the person in need of care as a “role exit” (Gaugler et al., 2011). Terum et al. (2021), in this issue of International Psychogeriatrics, examine within the Dementia Study of Western Norway (DemVest) study specific aspects of carer distress that may influence time until nursing home admission (NHA) of individuals with mild Alzheimer’s disease and dementia with Lewy bodies. In a previous study, the authors showed that a higher score on the Relative Stress Scale (RSS) predicted a faster admission to NH (Svendsboe et al., 2018). Therefore, the aim of their present study was to assess individual items of the RSS for looking beyond the sum score of the RSS and special factors in experiencing distress in the role of a caregiver. In the past two decades, research literature reported carers burden and distress both as consistent and significant factors influencing NHP (Cepiou-Martin et al., 2016; Gaugler et al., 2008; Luppa et al., 2008; Toot et al., 2017). The construct “caregivers burden” has been considered as multidimensional response to physical, psychological, emotional, social, and financial (named primary) stressors associated with the caregiver’s experience. These primary stressors represent the objective characteristics of the caregiving situation, such as caregiving daily hours, duration of the caregiving, and caregiver’s health. And the experience of burden is mediated by other factors besides the primary stressors, particularly the caregiver’s resources such as personal and social resources as well as community-based care available. Caregiver’s burden means – as secondary stressor – the subjective appraisal of the objective caregiving stressors. Terum et al. (2021) found that the factor carer’s distress measured with the 15-item Norwegian RSS is an important contributor to the time of NHA: in this study, 19.3% of the total variance of time until NHA was explained by that factor. In detail, the following items of the RSS were shown as significant predictors of shorter time to NHP: feeling of International Psychogeriatrics (2021), 33:4, 311–313 © International Psychogeriatric Association 2021