Valuation of Informal Care Provided to People Living With Dementia: A Systematic Literature Review

Engel, Lidia; Ajdukovic, Maja; Bucholc, Jessica; McCaffrey, Nikki

doi:10.1016/j.jval.2021.04.1283

Cited by 17 publications

(6 citation statements)

References 76 publications

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“…As in any other study, but especially in cost studies, we must consider the external validity of our results. In this respect, differences between countries, with different organizational and funding models, as well as in the perspective chosen for the analysis may be important, as has been pointed out in the literature referring to this disease [13,61,62,[64][65][66]; especially when some studies have already shown differences between cohorts of dementia patients in different countries in relation to socio-demographic and clinical factors [67,68]. Moreover, we must consider recent studies that indicate a probable relative decrease in the population impact of dementia.…”

Section: External Validity and Extrapolation Of Resultsmentioning

confidence: 99%

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A 14-Year Longitudinal Analysis of Healthcare Expenditure on Dementia and Related Factors (DEMENCOST Study)

Inoriza

Carreras

Coderch³

et al. 2023

JAD

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Background: The large number of dementia cases produces a great pressure on health and social care services, which requires efficient planning to meet the needs of patients through infrastructure, equipment, and financial, technical, and personal resources adjusted to their demands. Dementia analysis requires studies with a very precise patient characterization of both the disease and comorbidities present, and long-term follow-up of patients in clinical aspects and patterns of resource utilization and costs generated. Objective: To describe and quantify direct healthcare expenditure and its evolution from three years before and up to ten years after the diagnosis of dementia, compared to a matched group without dementia. Methods: Retrospective cohort design with follow-up from 6 to 14 years. We studied 996 people with dementia (PwD) and 2,998 controls matched for age, sex, and comorbidity. This paper adopts the provider’s perspective as the perspective of analysis and refers to the costs actually incurred in providing the services. Aggregate costs and components per patient per year were calculated and modelled. Results: Total health expenditure increases in PwD from the year of diagnosis and in each of the following 7 years, but not thereafter. Health status and mortality are factors explaining the evolution of direct costs. Dementia alone is not a statistically significant factor in explaining differences between groups. Conclusion: The incremental direct cost of dementia may not be as high or as long as studies with relatively short follow-up suggest. Dementia would have an impact on increasing disease burden and mortality.

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Section: External Validity and Extrapolation Of Resultsmentioning

confidence: 99%

“…The societal costs associated with nonprofessional care are high and depend on the methodology used to calculate them [60][61][62]. Regardless of these considerations, these studies, at least to our knowledge, do not usually perform matching processes such as the one we performed, especially regarding the burden of disease.…”

Section: Limitationsmentioning

confidence: 99%

A 14-Year Longitudinal Analysis of Healthcare Expenditure on Dementia and Related Factors (DEMENCOST Study)

Inoriza

Carreras

Coderch³

et al. 2023

JAD

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“…While our research spotlights First Nations caregivers’ and providers’ situation, in particular caregivers’ invisibility, Canadian caregivers are also the invisible workforce. There is a general reluctance to account for the contributions of the family care sector [ 58 , 59 ]. As Economist Janet Fast points out, the inequities are also invisible [ 2 , 3 ].…”

Section: Discussionmentioning

confidence: 99%

Supporting First Nations Family Caregivers and Providers: Family Caregivers’, Health and Community Providers’, and Leaders’ Recommendations

Ward

Buffalo²,

McDonald³

et al. 2023

Diseases

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Family caregivers and care providers are increasingly becoming more distressed and reaching a breaking point within current systems of care. First Nations family caregivers and the health and community providers employed in First Nations communities have to cope with colonial, discriminatory practices that have caused intergenerational trauma and a myriad of siloed, disconnected, and difficult-to-navigate federal-, provincial/territorial-, and community-level policies and programs. Indigenous participants in Alberta’s Health Advisory Councils described Indigenous family caregivers as having more difficulty accessing support than other Alberta caregivers. In this article, we report on family caregivers’, providers’, and leaders’ recommendations to support First Nations family caregivers and the health and community providers employed in First Nations. We used participatory action research methods in which we drew on Etuaptmumk (the understanding that being in the world is the gift of multiple perspectives) and that Indigenous and non-Indigenous views are complementary. Participants were from two First Nation communities in Alberta and included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). Participants advised that family caregivers needed four types of support: (1) recognize the family caregivers’ role and work; (2) enhance navigation and timely access to services, (3) improve home care support and respite, and (4) provide culturally safe care. Participants had four recommendations to support providers: (1) support community providers’ health and wellbeing; (2) recruit and retain health and community providers; (3) improve orientation for new providers; and (4) offer providers a comprehensive grounding in cultural awareness. While creating a program or department for family caregivers may be tempting to address caregivers’ immediate needs, improving the health of First Nations family caregivers requires a population-based public health approach that focuses on meaningful holistic system change to support family caregivers.

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“…In valuing informal care, a systematic literature review identified the replacement cost method and the opportunity cost approach as the two most common approaches. 24 The replacement cost approach assigns values for informal care hours based on the market wage paid to formal caregivers with the rationale that if the informal caregiver were unavailable, the respondent could hire a formal caregiver as a “replacement.” In this study, we have taken a “replacement” approach, valuing informal care time based on the wages of social service workers providing non-residential care, obtained from Eurofound]. 25 The wages of social services workers ranged from 63% to 93% of mean earnings in each country.…”

Section: Methodsmentioning

confidence: 99%

Economic costs of dementia in 11 countries in Europe: Estimates from nationally representative cohorts of a panel study

Meijer

Casanova²,

Kim³

et al. 2022

The Lancet Regional Health - Europe

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Valuation of Informal Care Provided to People Living With Dementia: A Systematic Literature Review

Cited by 17 publications

References 76 publications

A 14-Year Longitudinal Analysis of Healthcare Expenditure on Dementia and Related Factors (DEMENCOST Study)

A 14-Year Longitudinal Analysis of Healthcare Expenditure on Dementia and Related Factors (DEMENCOST Study)

Supporting First Nations Family Caregivers and Providers: Family Caregivers’, Health and Community Providers’, and Leaders’ Recommendations

Economic costs of dementia in 11 countries in Europe: Estimates from nationally representative cohorts of a panel study

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