A cross-sectional study of family caregiver burden and psychological distress linked to frailty and functional dependency of a relative with advanced dementia

Abstract

Psychological health of caregivers of people with dementia is a major public concern. This study sought to determine the relationship between caregiver burden, psychological distress, frailty and functional dependency of a relative with advanced dementia. Persons with dementia and their caregivers (102 dyads) participated in this Portuguese community based cross-sectional study. Data were collected using the Clinical Dementia Rating Scale, a sociodemographic questionnaire, the Zarit Burden Interview, the Brief Symptoms Inventory and the Edmonton Frail Scale. Alzheimer's disease was the most common type of dementia among the recipients of care, who showed moderate (42.2%) to severe (52.9%) dementia. Among them 35.3% exhibited moderate and 45.1% severe frailty. Family caregivers reported moderate (76.5%) to severe burden (18.6%). Psychological distress was very high among family caregivers. Results show that people with dementia exhibited moderate (35.3%) or severe frailty (45.1%) and that a severe frailty was found in people with moderate dementia. A one-way ANOVA was conducted between the Global Severity Index and some sociodemographic variables. ANOVA reached p < .01 for employment status of the caregiver, assistance and professional support, and psychiatric history; and p = 0.01 for caregiver age and years of caregiving. Although caregivers reported benefit from the supportive approach offered by the multidisciplinary home care team, high levels of distress and associated burden were found, which might decrease their capacity to care for the person with dementia and their own health and well-being.

Chronic Disease, Disability, Psychological Distress and Suicide Ideation among Rural Elderly: Results from a Population Survey in Shandong

“…One possible explanation was that high levels of disease burden were more sensitive to psychological distress. In addition, the internet might also have positive effects on particularly older people who obtain information about their (chronic) diseases that contribute to their stress and access social support that is beneficial to their mental health [42,43,44]. There is a considerable body of research on the effects, both positive and negative, of media on suicide among different age groups [45,46,47,48,49].…”

Family carers' perspectives of managing activities of daily living and use of mHealth applications in dementia care: A qualitative study

“…Management of ADLs in people with dementia is also reported in the literature as a contributing factor to carer burden (Chan et al, ; Yu, Wang, He, Liang, & Zhou, ). The changing nature of dementia symptoms is a significant barrier in care planning and organisation due to a decline in memory and executive function leading to social and occupational impairments in people with dementia (Abreu et al, ; Tarawneh & Holtzman, ).…”

“…Additionally, the caregiving process may be more challenging when the person with dementia has reduced insight, agitation and resistance to care (Farina et al, 2017). Negative consequences for carers related to the provision of functional care are widely reported and include carer burden, psychological distress, anxiety, depression and poor quality of life (QOL) (Abdollahpour, Noroozian, Nedjat, & Majdzadeh, 2012;Abreu, Tolson, Jackson, & Costa, 2018;Farina et al, 2017;Kang et al, 2014;Svendsboe et al, 2016). Moreover, the lack of knowledge, skills and training is a significant challenge faced by family carers when related to functional care (Cova et al, 2018;DiZazzo-Miller, Samuel, Barnas, & Welker, 2014).…”

The relationship between frailty, functional dependence, and healthcare needs among community‐dwelling people with moderate to severe dementia

“…The study was completed over 3 years (2014–2017). The findings related to family caregivers are presented elsewhere (Abreu, Tolson, Jackson, & Costa, ).…”