Evaluation of full costs of care for patients with Alzheimer's disease in France: The predominant role of informal care
Introduction
Alzheimer's disease (AD) represents the lion's share of the dementia prevalence rate [1]. Along with an ageing population, the number of people with AD is expected to increase in the future since AD prevalence has been shown by Prince et al. (2013) to be positively associated with age [2]. In France in 2010, patients with AD were estimated to represent 2–4% of the population aged 65 and over [3], and a similar distribution was observed in other developed countries [4].
Caring for patients with AD generates significant costs. Within the EUROCODE project, the cost of dementia was €160 billion in the EU27 in 2008 [5] corresponding to 1.3% of EU GDP. Since the number of AD patients is expected to be multiplied by 2.5 by 2040 in France [6], the related costs are likely to rise significantly. In addition to formal medical costs, assistance for community-dwelling patients with AD, who are 60% of total patients [7], constitutes the greatest part of costs [8] and is provided by both professional services (formal care) and relatives and friends (informal care). Previous studies have already measured costs generated by formal care for patients with AD, although only a few of these have focused on both informal and formal care [9], [10], [11]. However, all types of care have to be taken into account, and full costs of caring are very important in a comprehensive economic analysis when appropriate long term care policies have to be implemented – including choices made by government among cost-effective interventions or programmes designed to support caregivers [12].
Particular emphasis should be put on informal care assessment since most resources used for patients suffering from the less severe forms of AD are informal [9] as is the largest care component for all patients with AD in high-income countries such as the US, Italy, and France [13], [14]. In the latter, 60% of total AD care costs were attributable to informal care, whereas these only represented 55% across all EU27 countries [14]. From a societal perspective, valuing informal care along with formal care allows accurate estimation of overall AD related costs and better anticipation of future demand and supply for care. A monetary value needs to be given to informal care given that it has no market price, being referred to by Van den Berg et al. as a ‘quasi-market composite commodity’ arising out of care recipients’ demand [15]. Valuing this last is thus a complicated task when estimating costs related to AD. However, two benchmark methods are available for valuing informal care time: stated preference methods, which rely upon hypothetical scenarios, and revealed preference methods, based on observable behaviours [16]. Among the latter, our study used two competing – and theoretically different – approaches to time unit estimation: we valued caregiving inputs using the opportunity cost method and caregiving outputs using the proxy good method [17]. In comparison with stated preference methods – such as the contingent valuation and conjoint measurement methods – these are more straightforward to implement, and both estimate informal care on the basis of the amount of time spent on it.
Because of demographic changes (i.e. lower fertility rates, ageing population), the increasing participation of women in the labour market and geographical distance between family members, caregiving for elders has gradually become a public policy concern rather than a family one [18]. As a result, the commodification of care (which often implies marketization of care [19], [20] or welfare mix policies) combines private and public care [21]. In such a context, public financial subsidies have been introduced in most OECD countries in order to offer some measure of support to patients’ AD-related economic burden [22]. Since 2002, a means-tested allowance in France, named APA (Allocation Personnalisée d’Autonomie) has been provided to patients aged over 60 and needing formal and informal assistance for activities of daily living (ADL). APA was estimated at around €500 per month for community-dwelling patients in 2009 [23].
Current concerns about the APA s ability to compensate the full cost of AD (including informal costs) have directly underpinned our research. The study first aimed to assess all costs for community-dwelling patients with AD in France using both the opportunity cost method and the proxy good method. Second, factors associated with informal care time were analyzed. The paper is set out as follows. Material and methods are described in Section 2. In Section 3, we summarize and interpret the results for the estimated costs and factors influencing informal care time. Finally, the results are discussed before concluding by some policy implications.
Section snippets
Study design
The study was developed as part of a research project targeting the trajectories of patients with AD and other mental disorders, and financed by the French National Fund for Solidarity & Autonomy. Three regional public multidisciplinary memory clinics located in mid-sized towns participated in the recruitment of patients, referred by GPs, other health professionals or families, since they are used to caring for more socially diverse range of patients than are specialists in private practice [24]
Patient and caregiver characteristics
Fifty-seven patients with AD were included in this study. Patient and caregiver characteristics along with performed hours of non-medical care are presented in Table 2.
An equal number of males and females with mild, moderate and severe levels of dementia, were observed in the sample, with on average a 19 (±5) MMSE corresponding to the moderate stage. This sample was, however, not representative of the population of patients with AD in France, since more females than males are affected by the
Discussion
This paper reports the full costs related to patients with AD and emphasizes the share of formal and informal resources used in the care process in a societal perspective of costing. The intention of this study was to examine the extent to which public policies in France could support – or not – informal caregivers’ care efforts towards their close relatives suffering from AD, within the broader context of the national Alzheimer's plan, implemented from 2008 to 2012.
The main finding was that
Conclusion
Costs associated with Alzheimer's disease (AD) patients, estimated in a societal perspective and regardless of the economic method selected, were predominantly for formal and informal non-medical care and provided for IADL and ADL support. Many people with AD or other related disorders were cared for by their spouse or children, as informal caregivers. The APA public financial support for loss of autonomy represented on average about one fifth of the total costs for AD patients. Since patients
Acknowledgements
We would like to thank the French National Fund for Solidarity & Autonomy (CNSA), who financed this research. We also thank Cora Lebreton for her support in statistical analyses.
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