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Integrating Estimates of the Social and Individual Costs of Caregiving into Dementia Treatment Trials.

ABSTRACT: A variety of new treatments for dementia are awaiting or undergoing randomized clinical trails. These trials focus on outcomes such as changes in cognitive function, physical function, or amyloid plaques. What is quite important and is too often missing from these trials are estimates of the impact of these treatments on the social and individual costs of providing care for those facing dementia. Until outcomes such as family caregiver time and caregiver burden are included in trails of dementia treatments, the picture of how well these treatments work will be distressingly incomplete.

SUBMITTER: Phillips CD

PROVIDER: S-EPMC4786098 | biostudies-other | 2016

REPOSITORIES: biostudies-other

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Integrating Estimates of the Social and Individual Costs of Caregiving into Dementia Treatment Trials.

Phillips Charles D CD

Health services insights 20160309

A variety of new treatments for dementia are awaiting or undergoing randomized clinical trails. These trials focus on outcomes such as changes in cognitive function, physical function, or amyloid plaques. What is quite important and is too often missing from these trials are estimates of the impact of these treatments on the social and individual costs of providing care for those facing dementia. Until outcomes such as family caregiver time and caregiver burden are included in trails of dementia ...[more]

PMID: 26997869

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Project description:BackgroundWith population aging, the economic burden of dementia is growing in Europe. Understanding the economic costs of dementia provides an important basis for prioritization in public health policy and resource allocation.MethodsWe calculate the economic costs of dementia, including both direct medical and social care costs and indirect costs of informal care, for 11 countries in Europe. Costs are estimated using population-representative data from the Survey of Health, Ageing, and Retirement in Europe from 2004 to 2017, supplemented with external information about wages of care workers, dementia prevalence, and fraction of direct costs paid by other sources. We report overall costs for persons, both living and deceased with dementia and also isolate the costs attributable to dementia by estimating regression models that relate a given cost component to dementia while controlling for coexisting conditions and demographics. We make the monetary data comparable by adjusting for inflation and Purchasing Power Parity to 2018 euros.FindingsAverage annual direct out of pocket costs that can be attributed to dementia vary between EUR 253(95% CI: -17 to 522) and EUR 859 (95% CI: -587 to 2306) across countries, but are not statistically significant after adjustment for multiple testing. Average annual hours of informal care that can be attributed to dementia vary between 163 (95% CI: 27-299) and 1051 (95% CI: 15-2086) annual hours across countries, and are statistically significant in all countries before adjustment for multiple testing, and in seven out of 11 countries after this adjustment. Combining these estimates with external wage information in each country implies a burden between EUR 2687.4 (95% CI: 704.5 to 4670.3) and EUR 15,468 (95% CI: 8088.1 to 22,847.9) per individual with dementia per year depending on the country. When combined with external estimates of the fraction of direct costs covered by other payment sources (insurance, government) and numbers of individuals with dementia, estimates of the total costs of dementia at the country level vary from EUR 162.9 million (95% CI: 56.3 to 269.5) in Estonia to EUR 32,606.9 (95% CI: 13,893.9 to 51,319.9) in Germany. Informal care costs account for the largest proportion of costs attributable to dementia in all European countries, varying between about 50% and about 90%.InterpretationThe economic burden of dementia on families in terms of direct out-of-pocket and informal care costs varies greatly by country, depending on the health and social care systems. Informal care costs accounts for the largest proportion of costs, requiring policy attention to dementia care provision and costs.FundingThis project is funded by the National Institute on Aging, National Institutes of Health, USA (R01 AG030153).

Project description:Losing a spouse can increase the risk for premature mortality, and declines in immune health are thought to play a role. Most of the supporting data have come from cross-sectional studies comparing already-bereaved individuals to matched controls, which provides valuable information about health disparities between groups but does not reveal health changes over time. Moreover, the health consequences of bereavement may be unique for dementia family caregivers, a large and growing segment of the population. The current study sought to evaluate the course of health around 52 dementia spousal caregivers' bereavement by capturing lymphocyte proliferation to Con A and PHA and self-rated health before and after spousal loss. To investigate the moderating role of the social environment, we examined associations between social ties and health trajectories before and after spousal loss. Using piecewise linear mixed models to allow for turning points in caregivers' trajectories, we found that, for the average caregiver, lymphocyte proliferation to both mitogens weakened as bereavement neared and continued to decline after the loss, but at a slower pace. In tandem, perceived health degraded as bereavement approached but rebounded thereafter. Further, we found that socially isolated caregivers showed marked declines in immune responses to Con A and PHA over time both before and after bereavement, whereas their socially connected counterparts had shallower declines to PHA and maintained a level immune response to Con A. In addition, socially isolated caregivers reported poorer health before and after bereavement compared to their counterparts, whose self-rated health declined as the loss neared but later recovered to exceed prior levels. These findings shed new light on the dynamics of immune function in response to spousal bereavement after dementia caregiving: longitudinal data reveal a pattern of health recovery following caregivers' loss, particularly among those with more robust social networks prior to bereavement.

Dataset Information

Integrating Estimates of the Social and Individual Costs of Caregiving into Dementia Treatment Trials.

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Integrating Estimates of the Social and Individual Costs of Caregiving into Dementia Treatment Trials.

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