Emotional and physical demands on caregivers in home care to the elderly in Switzerland and their relationship to nursing home admission

Abstract

Background: Planning the home care of growing numbers of old, dependent people must include the caregivers' burden. Methods: A convenience sample of 129 caregivers of elderly patients with multiple diagnoses was interviewed about the caregiving context, burden, caregivers' tolerance of patients' troublesome behaviours and physical symptoms, mutuality and feelings of closeness between caregiver and patient. Continued maintenance of home care was assessed by a follow-up telephone call. Results: Caregivers were mainly spouses (67%) and female (73%), and the mean duration of care was 5.5 years. In five activities of daily living (ADL) 50-69% of the patients needed full help. Caregivers reported predominantly negative effects of caregiving on their physical and mental health, rest and sleep, leisure time and social life, problems with patients' symptoms and behaviours and little or no conversing (51%) or exchanging feelings with patients (71%). Predictive models: Contributors to variance were for burden (35%), impact of care on caregivers' mental health, social relations and leisure time, patients' gender, accumulation of patients' symptoms and behaviours; for caregivers' tolerance toward patients' symptoms and behaviours (17%) caregivers' physical health, patients' level of confusion, feelings of mutuality; for mutuality (22%) and for closeness (19%) caregivers' mental health, patients' accumulation of symptoms and behaviours. Within 23 months 19% of the patients had been institutionalized. Factors giving a higher likelihood of instrtutionalization were: being male, caregiver was not a partner, and less closeness between caregiver and patient. Conclusion: Caregiving of older persons has bio-psychosocial ramifications for caregivers. Closeness between caregiver and patient seems to be a key factor in determination of the long-term outcome.

Caregiving at night: Understanding the impact on carers

“…Third, sleep problems are a major predictor of subsequent entry into nursing homes (Pollak & Perlick, 1991;Kesselring et al, 2001). Pollak and Perlick (1991) found that 70% of primary caregivers of elders recently admitted to US nursing homes cited nocturnal problems in their decision to institutionalize, primarily because their own sleep was disrupted.…”

Long-term outcomes of stroke rehabilitation: patients and informal caregivers

“…Giving informal care to a person suffering from stroke with persistent disabilities or from dementia with deteriorating functional and cognitive abilities encompasses a much longer time span than is frequently investigated Kesselring, et al, 2001;). The number of longitudinal studies conducted longer than one year is small.…”

“…Research reports predominantly on the negative impacts and consequences . These consequences apply not only in the case of stroke patients but also to other patient groups, who are (progressively) impaired by a chronic disease Kesselring et al, 2001;Thommessen et al, 2002). It is therefore important to be aware of who is providing the care for these patients and how this type of caregiving affects the informal caregiver.…”

“…Additionally, the societal and political expectations foster the idea of old frail people and persons with chronic diseases living at home as long as possible. This creates more and even longerlasting informal caregiving situations (Braun, et al, 2009;Greenwood & Mackenzie, 2010;Kesselring, et al, 2001 Informal caregiving refers to "activities and experiences involved in providing help and assistance to relatives or friends who are unable to provide for themselves" )(p 583).…”

“…Mayor, et al, 2009). Finding meaning and gratification in the caregiving role can be seen as a positive effect (Kesselring, et al, 2001;Lyons, et al, 2002). In research, however, the focus frequently lies on negative effects such as strain/burden, depression, health deterioration and social changes Van Durme, Macq, Jeanmart, & Gobert, 2012 analyses with lack of comprehensibility to the original data, and qualitative studies.…”