The Trajectory of Caregiver Burden and Risk Factors in Dementia Progression: A Systematic Review

Kieboom, Robin van den; Snaphaan, Liselore; Mark, Ruth E.; Bongers, I.M.B.

doi:10.3233/jad-200647

Cited by 100 publications

(95 citation statements)

References 27 publications

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“…Several systematic reviews have identified that these stressors, which include demographic information of the people with dementia (e.g. education [ 10 ]), their health and functional status (including cognitive functionality [ 11 ], functional status [ 10 – 13 ], behavioural disturbance [ 10 , 11 ], neuropsychiatric symptoms [ 10 ]) and caregiver characteristics (e.g. relationship with person with dementia [ 13 ], cohabitation with care-recipients [ 10 , 13 ], caregiving load [ 10 ], coping style [ 11 ]).…”

Section: Introductionmentioning

confidence: 99%

Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

et al. 2021

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Background Informal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study. Methods Analysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer’s disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions. Results Caregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients’ ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient’s older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers. Conclusions This study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention.

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Section: Introductionmentioning

confidence: 99%

Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

et al. 2021

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“…Several previous studies have concluded that BPSD predicted a higher burden of care. [8][9][10]21,32 This effect appeared to be primarily driven by disruptive behaviors (such as agitation, aggression, and disinhibition), followed by delusions and mood disturbance. 10 Disruptive behaviors had an adverse impact on the emotional connection between the caregiver and the care recipient and exacerbated difficulties in caring for the patients.…”

Section: Discussionmentioning

confidence: 98%

“…van den Kieboom et al 8 and Xiong et al 28 reported that being a female spouse is a risk factor for having a high burden when caring for people living with dementia. Care loads such as care duration and intensity (time spent on care per week) have been proven to be associated with the burden level.…”

Section: Discussionmentioning

confidence: 99%

“…The caregiver’s physical and mental health were closely associated with the burden of care when caring for people with dementia. 8 , 9 There is plenty of previous literature that discusses the caregiver’s mood and its association with the care burden. 9 , 21 , 36 , 37 Caregivers who express anxiety, depression, or aggressiveness have been reported to experience a higher burden level.…”

Section: Discussionmentioning

confidence: 99%

“…7 Previous systematic reviews found that the predictors of a high burden for caregivers of people with dementia included increased behavioral impairment (especially disruptive behaviors) and decline in functional status in the patient, the caregiver's socio-economic factors (such as being a female spouse) and their psychological health. [8][9][10] By using the Apriori algorithm, our previous studies delineated caring scenarios associated with the high caregiver burden for dementia. 11,12 Unlike traditional statistical tools which only declare specific factors, the Apriori algorithm, a data mining method, reveals statistical correlations from a multidimensional viewpoint when each attribute is viewed as a dimension by establishing threshold values of support and confidence.…”

Section: Introductionmentioning

confidence: 99%

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Characteristics Predicting a High Caregiver Burden in Patients with Vascular Cognitive Impairment: Using the Apriori Algorithm to Delineate the Caring Scenario

Jhang¹,

Wang²,

Chang³

et al. 2021

RMHP

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The aim of this study was to elucidate the factors and caring scenarios associated with a moderate to severe care burden in the caregivers of patients with vascular cognitive impairment (VCI). Patients and Methods: This cross-sectional study included 158 patients with VCI and their caregivers who were managed by the dementia collaborative care team at Changhua Christian Hospital, Taiwan. Gender, age, clinical dementia rating, walking ability, behavioral symptoms, and psychological symptoms were the variables from the patients with VCI. Age, marital status, relation to the VCI patient, education, employment status, help of key activities, type of primary care, frequency of care, ZBI (Zarit burden interview) caregiving burden, and caregiver's mood were the evaluated variables for the caregivers. The Apriori algorithm was used to identify the attributes that resulted in different caregiving burdens from a comprehensive viewpoint of both VCI patients and their caregivers. Results: A total of 1193 rules were identified with 1134 rules belonging to caregivers with a mild to moderate burden and 59 rules belonging to caregivers with a moderate to severe burden. Seven general rules were created based on a summary of these 59 rules. The results showed that an employed female caregiver who was taking care of her husband alone for ≥6 days per week, and who was helping with all key activities was likely to experience a moderate to severe burden when the patient had VCI. Moreover, if the caregiver had a relatively low education level and expressed an abnormal mood during the assessment, this increased the likelihood of the caregiver having a moderate to severe burden. Conclusion:The caregiver's gender, relation to the care recipient, education level, mood status, employment status, and care loading were associated with a higher burden of care for caregivers of patients with VCI. Therefore, a dementia care team should provide personalized training for caregivers about the disease, care skills for specific behaviors and psychological symptoms of dementia (BPSD), and strategies to cope with their own feelings. Caregivers should also be referred to appropriate social resources, such as support groups or respite care.

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Association Between New-Onset Medicaid Home Care and Family Caregivers’ Health

et al. 2021

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IMPORTANCE More than 17 million people in the US provide uncompensated care for adults with physical or cognitive limitations. Such caregiving is associated with worse mental and physical health, yet little research has investigated how publicly funded home care might ameliorate these harms. OBJECTIVE To investigate the association between Medicaid home care services and family caregivers' health. DESIGN, SETTING, AND PARTICIPANTS This longitudinal cohort study used data from the 1996 to 2017 Medical Expenditures Panel Survey. Data on all household members were collected in 5 interviews over 2 years. Person-level difference-in-difference models were used to isolate withinperson changes associated with new onset of Medicaid home care. The Medical Expenditures Panel Survey longitudinal data sets included 331 202 individuals (approximately 10% excluded owing to loss to follow-up). Adult (age Ն21 years) members of households that contained at least 1 person with limited activities of daily living were included in our study. The analysis itself was performed from March to August of 2020. EXPOSURES New onset of regular (Ն1 time per month) Medicaid home care in the household.MAIN OUTCOMES AND MEASURES Self-rated mental and physical health (planned prior to beginning the study). RESULTSThe study population was 14 013 adults; 7232 were "likely caregivers," or nondisabled adult coresidents of someone with activities of daily living limitations. Overall, 962 likely caregivers were ever exposed to Medicaid home care in the household; for 563, we observed the onset. Of likely caregivers exposed to Medicaid home care, 479 (50%) were women; 296 (31%) were White non-Hispanic, 309 (31%) were Hispanic or Latinx, and 279 (29%) were Black non-Hispanic individuals, respectively; 326 (34%) had less than a high school education; and 300 (31%) were in or near poverty. Median age of participants was 51 (interquartile range, 39-62) years. New-onset Medicaid home care was associated with a 0.08 standard deviation improvement in likely caregivers' self-rated mental health (95% CI, 0.01-0.14; P = .02) measured 1 to 6 months after onset, equivalent to a 3.39% improvement (95% CI, 0.05%-6.33%) over their average preonset mental health. No association with self-rated physical health was found (<0.001 standard deviations; 95% CI, −0.06 to 0.06; P = .99). CONCLUSIONS AND RELEVANCEIn this cohort study, Medicaid home care was associated with improvement in caregiver self-rated mental health, but not with any short-term change in self-rated physical health. When evaluating the social value of home care programs, policy makers should consider spillover benefits to caregivers.

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The Trajectory of Caregiver Burden and Risk Factors in Dementia Progression: A Systematic Review

Cited by 100 publications

References 27 publications

Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

Characteristics Predicting a High Caregiver Burden in Patients with Vascular Cognitive Impairment: Using the Apriori Algorithm to Delineate the Caring Scenario

Association Between New-Onset Medicaid Home Care and Family Caregivers’ Health

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