Utilization of Formal and Informal Care by Community-Living People with Dementia: A Comparative Study between Sweden and Italy

Chiatti, Carlos; Gatta, Danae Rodríguez; Fänge, Agneta Malmgren; Scandali, Valerio Mattia; Masera, Filippo; Lethin, Connie; Up-Tech,

doi:10.3390/ijerph15122679

Cited by 13 publications

(14 citation statements)

References 47 publications

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“…The Swedish universal healthcare system has been criticised for its difficulties in addressing informal caregivers (Johansson, Long, & Parker, ). Also, one study of informal caregivers to dementia care receivers showed that informal caregivers in Sweden spend less time in their caregiving when compared with caregivers in another European country, Italy (Chiatti et al, ). Systems for supporting informal caregivers are present in other European countries as well, such as the United Kingdom's Carer's Assessments for adult carers of people who are disabled, ill or elderly and the Carer Support Needs Assessment Tool (Austin, Ewing, & Grande, ).…”

Section: Discussionmentioning

confidence: 99%

Living environment, social support, and informal caregiving are associated with healthcare seeking behaviour and adherence to medication treatment: A cross‐sectional population study

Berglund

Lytsy

Westerling

2019

Health Soc Care Community

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Despite the well‐known associations between local environment and health, few studies have focused on environment and healthcare utilisation, for instance healthcare seeking behaviour or adherence. This study was aimed at analysing housing type, behaviour based on perceived local outdoor safety, social support, informal caregiving, demographics, socioeconomics, and long‐term illness, and associations with health‐seeking and adherence behaviours at a population level. This study used data from the Swedish National Public Health Survey 2004–2014, an annually repeated, large sample, cross‐sectional, population‐based survey study. In all, questionnaires from 100,433 individuals were returned by post, making the response rate 52.9% (100,433/190,000). Descriptive statistics and multiple logistic regressions were used to investigate associations between explanatory variables and the outcomes of refraining from seeking care and non‐adherence behaviour. Living in rented apartment, lodger, a dorm or other was associated with reporting refraining from seeking care (adjusted OR 1.16, 95% CI 1.00–1.22), and non‐adherence (adjusted OR 1.22; 95% CI 1.13–1.31). Refraining from going out due to a perceived unsafe neighbourhood was associated with refraining from seeking care (adjusted OR 1.59, 95% CI 1.51–1.67) and non‐adherence (adjusted OR 1.26, 95% CI 1.17–1.36). Social support and status as an informal caregiver was associated with higher odds of refraining from seeking medical care and non‐adherence. This study suggests that living in rental housing, refraining from going out due to neighbourhood safety concerns, lack of social support or informal caregiver status are associated with lower health‐seeking behaviour and non‐adherence to prescribed medication.

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Section: Discussionmentioning

confidence: 99%

Living environment, social support, and informal caregiving are associated with healthcare seeking behaviour and adherence to medication treatment: A cross‐sectional population study

Berglund

Lytsy

Westerling

2019

Health Soc Care Community

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“…Dependency has demonstrated rapid growth in recent years [1]. Although the availability of care and services for may differ significantly across countries [2], in the countries of the Organization for Economic Cooperation and Development more than one in 10 adults assumes the role of non-professional caregiver [3].…”

Section: Introductionmentioning

confidence: 99%

Psychometric Properties of the Spanish Version of the Caregiver Burden Inventory

Vázquez

Otero

Simón

et al. 2019

IJERPH

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Although the Caregiver Burden Inventory (CBI) is the most widely used multidimensional burden instrument for assessing perceived burden of caregivers, there is no data on its psychometric properties in Spanish, nor on caregivers of dependent persons with various diseases. The objective of this study was to translate the CBI into Spanish and validate it in caregivers of dependent persons with various diseases. Trained evaluators administered the CBI and assessed emotional distress and probable mental disorder in 201 caregivers (87.1% women, mean age 56.2 years). The internal consistency of the CBI was 0.89 (0.74–0.83 among the subscales). There was a significant correlation of emotional distress with both the total burden and each subscale (p < 0.001 in all cases). A total score of 39 and scores of 16, 9, 8, 4, and 2 in burden per time dedicated to care, personal life burden, physical burden, social burden, and emotional burden were suitable cut-off points to discriminate caregivers with probable mental disorder (sensitivity = 63.0%–75.6%, specificity = 63.4%–74.4%). To achieve a greater goodness of fit, the model was re-specified, resulting in a shortened (15-item) instrument. The internal consistency reliability coefficients of the 15-item CBI were satisfactory (Cronbach α = 0.83; 0.77–0.86 among the subscales). Within the 15-item CBI, emotional distress was significantly correlated with the total burden, personal life burden, physical burden, social burden (p < 0.001 in all those cases), and emotional burden (p = 0.001). A total score of 25 and scores of 12, 5, 5, 3, and 1, respectively, in the subscales were identified as cut-off points to discriminate caregivers with probable mental disorder (sensitivity = 46.2%–70.6%, specificity = 43.9%–79.3%). Therefore, the 15-item CBI validly measured caregiver burden with better fit and more parsimoniously than the original CBI.

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“…The continuous deterioration caused by the disease makes those who are affected require more care. Consequently, people with dementia require assistance to perform activities of daily living (ADLs) such as bathing, clothing, feeding and using the toilet [9,10]. Dementia caregivers' wellbeing can be promoted, improved and maintained by applying treatment modalities such as pharmacological, psychological and psychosocial interventions.…”

Section: Introductionmentioning

confidence: 99%

“…Caregivers' burden is associated with health problems such as compassion fatigue that force some family caregivers to relinquish care roles of their loved ones to long-term care [13]. Dementia caregivers can be categorised into informal/family caregivers and formal/professional caregivers [7,9]. The informal caregivers' role is gendered.…”

Section: Introductionmentioning

confidence: 99%

Caring for Dementia Caregivers in Times of the COVID-19 Crisis: A Systematic Review

Aledeh¹,

Adam²

2020

AJNR

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Dementia is progressive and deteriorates during the progression of the disease affecting several millions of older people worldwide. The burden of caring for people with dementia is enormous and caregivers face serious psychological challenges from their caregiving roles. Dementia caregivers are exposed to psychological distresses such as stress, anxiety and depression. While there is robust literature on caregiver burden and their psychological effects, there are gaps in current knowledge about how best caregivers get the support that they need in order to prevent themselves from becoming the hidden victims, especially in unprecedented times such as the coronavirus 2019 (COVID-19) crisis. The aim of this paper was to apply the preferred reporting items for systematic reviews and meta-analysis (PRISMA) guidelines to conduct a systematic review of psychological and psychosocial outcomes. Targeted outcomes included stress, anxiety, depression, mental wellbeing, caregivers' support, psychosocial and psychological interventions. We searched for relevant articles using PubMed, Google Scholar, Science Direct, and ProQuest. We used search terms from the keywords to identify publications that were most relevant to our questions. Eight papers were finally selected and reviewed. Findings showed that dementia caregivers are mostly informal/family caregivers, mostly female and lack the knowledge about dementia. Further, findings revealed that dementia caregivers can be isolated from mainstream society. Consequently, they suffer from care burden and other psychological problems. Dementia caregivers can benefit from internet-based or web-based interventions. Although there are inconsistencies in methodological approaches of the various interventions, the interventions are effective. Findings further revealed that dementia caregivers are isolated from mainstream society due to the nature of their caregiving roles, and can access effective psychosocial and psychological interventions via the internet-based or web-based especially in unprecedented times such as the COVID-19 crisis.

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Utilization of Formal and Informal Care by Community-Living People with Dementia: A Comparative Study between Sweden and Italy

Cited by 13 publications

References 47 publications

Living environment, social support, and informal caregiving are associated with healthcare seeking behaviour and adherence to medication treatment: A cross‐sectional population study

Living environment, social support, and informal caregiving are associated with healthcare seeking behaviour and adherence to medication treatment: A cross‐sectional population study

Psychometric Properties of the Spanish Version of the Caregiver Burden Inventory

Caring for Dementia Caregivers in Times of the COVID-19 Crisis: A Systematic Review

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