Comparison Between Burden of Care Partners of Individuals with Alzheimer’s Disease Versus Individuals with Other Chronic Diseases

Demirbaş, Murat; Hahn-Pedersen, Julie Hviid; Jørgensen, Henrik L.

doi:10.1007/s40120-023-00493-6

Cited by 3 publications

(1 citation statement)

References 90 publications

(73 reference statements)

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“…This study specifically addresses advanced kidney disease because this disease is distinct in its severity and complexity, imposing a uniquely multifaceted and intense burden on caregivers when compared with other chronic conditions. 27 With its relentless progression, high mortality and extensive treatment demands including long-term dialysis, providing care to patients with advanced kidney disease demands a different set of skills, a certain degree of resilience and resourcefulness. Current generic tools for assessing caregiver burden in chronic diseases may fall short in accurately capturing the full range of emotional, physical and psychological stresses unique to this context.…”

Section: Introductionmentioning

confidence: 99%

Assessing caregiver burden in advanced kidney disease: protocol for a systematic review of the measurement properties of instruments and tools

Shankar,

Luo,

Lim

et al. 2024

BMJ Open

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IntroductionCaregiver burden is a significant issue in the care of patients with advanced kidney disease. Its assessment is crucial for evaluating the needs of caregivers and for the development of interventions to support them. Several instruments have been developed to measure caregiver burden in these patients. However, the measurement properties of these instruments have not been systematically reviewed.Methods and analysisThis systematic review will include a comprehensive search of databases including PubMed, CINAHL, Embase, Cochrane Library, SCOPUS and Web of Science by using keywords and MeSH terms to identify relevant studies starting from each database inception to 1 January 2024 and covering papers in English. The search strategy will combine relevant keywords and database-specific subject headings related to the following concepts: (1) caregivers, (2) burden, stress, distress, (3) chronic kidney disease, end-stage kidney disease, dialysis. Reference lists of eligible articles will also be hand searched. We will include quantitative and qualitative studies evaluating measurement properties of instruments assessing caregiver burden in caregivers of adult patients (aged ≥18 years). Data will be extracted from the selected studies and analysed using the COnsensus-based Standards for the selection of health Measurement INstruments checklist as the study quality assessment tool. Subsequently, the van der Vleuten utility index will be used to critique and categorise the instruments. A narrative that synthesises the utility of all instruments will be presented along with recommendations for the selection of instruments depending on specific clinical contexts. This systematic review will provide an overview of the measurement properties of available instruments, including discussion on reliability, validity and responsiveness. Results from the review may give rise to the subsequent development of most appropriate instrument that could be applied to the assessment of caregiver burden in advanced kidney disease.Ethics and disseminationEthics approval is not required as this study will merely synthesise data from published studies. The results will be disseminated through peer-reviewed publications as well as conference presentations.PROSPERO registration numberCRD42023433906.

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Section: Introductionmentioning

confidence: 99%

Assessing caregiver burden in advanced kidney disease: protocol for a systematic review of the measurement properties of instruments and tools

Shankar,

Luo,

Lim

et al. 2024

BMJ Open

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Influence of Behavioral and Psychological Symptoms on Caregiver Burden for Different Types of Dementia: Clinical Experience in Lima, Peru

Montesinos,

Custodio,

Malaga

et al. 2024

Dement Geriatr Cogn Disord

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Introduction. People caring of individuals with dementia are prone to suffering from burden. Behavioral and psychological symptoms of dementia (BPSD) may have an impact on caregiver burden. In Latin American countries there is lack of research on caregiver burden. We aimed to determine which BPSD have the greatest impact on caregiver burden among Peruvian patients with dementia; and to compare the effects of BPSD on caregiver burden across different types of dementia. Methods. Cross-sectional study of 231 patients living with Alzheimer’s dementia (AD), behavioral variant frontotemporal dementia (bvFTD), dementia with Lewy bodies (DLB) and vascular dementia (VD), and their caregivers attended in a Peruvian memory clinic. BPSD were assessed with the Neuropsychiatric Inventory (NPI). Caregiver burden was assessed with the Zarit Burden Inventory (ZBI). We used analysis of variance to compare the AD, bvFTD, DLB and VD groups. Correlations between ZBI and NPI subscale scores were assessed with Spearman’s correlation. Results. DLB caregivers had significantly higher levels of burden than the other patient groups (P < 0.05), and higher total NPI scores than caregivers for other patient groups (P < 0.05). bvFTD caregivers had significantly higher total NPI scores than AD and VD caregivers (P < 0.05). Hallucinations, aberrant motor behavior, and apathy were the symptoms most significantly correlated with caregiver burden in those caring for DLB, bvFTD, and AD patients, respectively. Conclusions. Neuropsychiatric symptoms are higher in DLB caregivers. Hallucinations, aberrant motor behavior, and apathy are the main symptoms correlated with burden.

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Progression analysis versus traditional methods to quantify slowing of disease progression in Alzheimer’s disease

Jönsson,

Ivkovic,

Atri

et al. 2024

Alz Res Therapy

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Background The clinical meaningfulness of the effects of recently approved disease-modifying treatments (DMT) in Alzheimer’s disease is under debate. Available evidence is limited to short-term effects on clinical rating scales which may be difficult to interpret and have limited intrinsic meaning to patients. The main value of DMTs accrues over the long term as they are expected to cause a delay or slowing of disease progression. While awaiting such evidence, the translation of short-term effects to time delays or slowing of progression could offer a powerful and readily interpretable representation of clinical outcomes. Methods We simulated disease progression trajectories representing two arms, active and placebo, of a hypothetical clinical trial of a DMT. The placebo arm was simulated based on estimated mean trajectories of clinical dementia rating scale–sum of boxes (CDR-SB) recordings from amyloid-positive subjects with mild cognitive impairment (MCI) from Alzheimer’s Disease Neuroimaging Initiative (ADNI). The active arm was simulated to show an average slowing of disease progression versus placebo of 20% at each visit. The treatment effects in the simulated trials were estimated with a progression model for repeated measures (PMRM) and a mixed model for repeated measures (MMRM) for comparison. For PMRM, the treatment effect is expressed in units of time (e.g., days) and for MMRM in units of the outcome (e.g., CDR-SB points). PMRM results were implemented in a health economics Markov model extrapolating disease progression and death over 15 years. Results The PMRM model estimated a 19% delay in disease progression at 18 months and 20% (~ 7 months delay) at 36 months, while the MMRM model estimated a 25% reduction in CDR-SB (~ 0.5 points) at 36 months. The PMRM model had slightly greater power compared to MMRM. The health economic model based on the estimated time delay suggested an increase in life expectancy (10 months) without extending time in severe stages of disease. Conclusion PMRM methods can be used to estimate treatment effects in terms of slowing of progression which translates to time metrics that can be readily interpreted and appreciated as meaningful outcomes for patients, care partners, and health care practitioners.

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Comparison Between Burden of Care Partners of Individuals with Alzheimer’s Disease Versus Individuals with Other Chronic Diseases

Cited by 3 publications

References 90 publications

Assessing caregiver burden in advanced kidney disease: protocol for a systematic review of the measurement properties of instruments and tools

Assessing caregiver burden in advanced kidney disease: protocol for a systematic review of the measurement properties of instruments and tools

Influence of Behavioral and Psychological Symptoms on Caregiver Burden for Different Types of Dementia: Clinical Experience in Lima, Peru

Progression analysis versus traditional methods to quantify slowing of disease progression in Alzheimer’s disease

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