Time use by family caregivers of elderly with dementia: an integrative review

Abstract

Objective: To describe the development of measures used between 1993 and 2016 to evaluate time use by family caregivers of elderly with dementia and to fi nd out the patterns of time use identifi ed in the literature. Method: An integrative review of articles was performed, indexed by the following terms: time use management, family caregiver and elderly. Results: A total of 17 articles were found, of which seven were methodological. Among these seven articles, fi ve were psychometric. The most frequently used measures were self-reporting (matrices, questionnaires and inventories), validated through objective measures of occurrence and duration. Longitudinal, prospective, clinical and correlational studies showed that care time covaries with the receptors' dependence and that the caregivers' subjective well-being is more affected by the time restriction to free choice activities than the burden resulting from obligatory activities. Final considerations: Valid self-reporting measures are widely used nowadays and they are considered to be effective to assess the objective and subjective costs of health care for dementia. Descriptors: Time; Dependence; Routine Activities; Long-lasting Care; Alzheimer's Disease. RESUMO Objetivo: Descrever a evolução das medidas utilizadas para a avaliação do uso do tempo por cuidadores familiares de idosos com demências, entre 1993 e 2016, e conhecer os padrões de uso do tempo identifi cados por essa literatura. Método: Revisão integrativa de artigos indexados pelos termos time use measurement, family caregiver e elderly. Resultados: Dezessete artigos, dentre os quais sete metodológicos. Dentre estes, cinco eram psicométricos. As medidas mais usadas foram de autorrelato (matrizes, questionários e inventários), validadas por medidas objetivas de ocorrência e duração. Estudos longitudinais, prospectivos, clínicos e correlacionais mostram que o tempo de cuidado covaria com a dependência do receptor e que o bemestar subjetivo do cuidador é mais afetado pela restrição do tempo para atividades de livre escolha do que pela sobrecarga decorrente das obrigatórias. Considerações fi nais: Medidas válidas de autorrelato são hoje amplamente usadas, consideradas como efi cazes para avaliar custos objetivos e subjetivos do cuidado nas demências. Descritores: Tempo; Dependência; Atividades Cotidianas; Assistência de Longa Duração; Doença de Alzheimer. RESUMEN Objetivo: Describir la evolución de las medidas utilizadas para la evaluación del uso del tiempo por cuidadores familiares de ancianos con demencias entre 1993 y 2016 y conocer los patrones de uso del tiempo identifi cados por esa literatura. Método: revisión integrativa de artículos indexados por los siguientes términos: time use measurement, family caregiver y elderly. Resultados: 17 artículos, entre los cuales siete metodológicos; de entre ellos, cinco eran psicométricos. Las medidas más usadas fueron de autoinforme (matrices, cuestionarios e inventarios), validadas por medidas objetivas de ocurrencia y duración. Los estudios longi...

Psychological Distress in Caregivers for People with Dementia: A Population-Based Analysis of a National Cross-Sectional Study

“…Our results showed that spending almost all day on nursing care was associated with serious psychological distress in CGs. Nursing CRDs requires more time than nursing elderly people without dementia [29], and spending substantial time caring for CRDs has been associated with the heaviness of the burden imposed on CGs [29,30]. Speci cally, caring for CRDs at home involves a variety of tasks, such as changing clothes, washing, toileting, assisting with eating, or helping with medication, producing subjective burden experienced by CGs [31].…”

Patterns of use of time by family caregivers of elderly persons with dementia

“…Due to cultural and historical determinisms that match the sample of this study with those of other studies carried out in Brazil and abroad, the sample population was essentially female, aged 50 years or over, composed of daughters and spouses of the care recipients, with whom they resided and of whom they were the main caregivers 5,6,30 . Even in countries with a greater tradition of formal care for the elderly than Brazil, family caregivers are mainly responsible for the daily care and supervision of elderly people with dementia 13 . Replicating a characteristic of this cohort, which is not necessarily repeated in other countries, the majority did not perform paid work 31 .…”

“…Time spent on obligatory care activities restricts the participation of informal caregivers in discretionary activities, including social activities outside home, such as religious activities and work, and at-home activities such as reading and communication with friends and relatives through social networks. Two of the most recurrent complaints of family caregivers are the deprivation and the sense of loss of control over one's own social life 13 . Obligatory care activities are the most time consuming, 14,15 generating dissatisfaction with the constraints they place on personal, domestic and social activities 16 , and are most associated with depressive symptoms and with a sense of lack of social support 17 .…”

Elderly victims of violence: family assessment through the Calgary model

“…It is emphasized that domestic activities and the role of family caregiver were historically attributed to women and are based on cultural and social values of the first half of the last century, in which women assumed the role of household, therefore, they would not need to study (12) . Thus, in the minds of their partners, this function is still her attribution, and at this stage of life, as observed in the families analyzed, they no longer had the physical and emotional condition necessary for this function.…”