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P11. Socio-economic cost of dementia

Detailed Programme, abstracts and presentations

P11. Socio-economic cost of dementia (Friday, 5 October, 16.00-17.30, Europa 5)

P11.1. Because they’re worth it! Cost of informal care provided to people with dementia

Bérengère Davin, Alain Paraponaris

Context: As stated in the recent report of the World health Organization, dementia is a major cause of disability in daily life and leads to strong consequences for patients and their relatives, who have to cope with medical, social and economic changes. Therefore, treating and caring for people with dementia entails both public and private costs that amount to billions of euro per year. Over the last ten years, France passed public policies for the management and financing of long-term care towards people with disabilities and/or dementia. Despite a greater availability of public services and support, informal care is still the main pillar, without its economic value being assessed. This study aims to estimate the cost of informal care provided to people with dementia, using the contingent valuation method that measure the caregivers’ willingness to provide an extra hour of care or to pay someone for supplying it.

Methods: The sample used comes from a national survey on informal caregivers (enquête Handicap-Santé Aidants informels), following the general survey on health and disability (enquête Handicap-Santé Ménages), both gathered in 2008 by the French National Institute of Statistics (INSEE) and the French Ministry of Health (DREES). More than 400 informal caregivers of demented persons have been asked about their personal characteristics, the care they provide, and the consequences on their life. For the first time in France, a specific part of the survey was dedicated to questions on willingness to pay (WTP) and to accept (WTA) for an extra-hour of informal care.

Results: From a macroeconomic point of view, informal care received by people with dementia is assessed between 4 and 6 billion euro per year, depending on the type of activities that are considered. From a microeconomic point of view, data show that informal caregivers of demented persons, who gave a positive amount, reported a mean WTP of 16.9 euro, and a mean WTA of 13.7 euro. Analyses based on Heckman models reveal that WTP is higher when caregivers are spouses, younger, live further, do not need respite care, and when care recipients are older, have higher income, and are in good health, all other things being equal. Older caregivers and men are less likely to give a high value of WTA, as well as those facing moral fatigue and professional changes. WTA increases with need for respite care and income of the care recipient.

Conclusion: Policy makers strongly expect pieces of knowledge about costs and characteristics that determine the use of care, which are key issues for the design of social and health policies that would both meet needs of people with dementia and their caregivers. The assessment of cost that relies on the caregivers’ personal appreciation, through the contingent valuation method, gives the possibility to better know the value they attribute to the care they provide and factors that can affect this devotion. It can be useful in order to develop measures that both promote and relieve informal care provided to persons with dementia.

P11.2. Economic analysis of the intangible impacts of informal care for people with Alzheimer’s disease and other mental disorders.

Chloé Gervès, Martine Bellanger, Joël Ankri

Objective: Caring for older people with Alzheimer’s disease (AD) or other mental disorders is a salient issue in ageing societies and an essential aspect of social and health policies. A large and increasing part of this care is provided by the patient’s relatives or informal caregivers. Informal care is an important input of the health production function; from a societal perspective, its cost can be analyzed through direct, indirect and intangible costs. Valuing the intangible impacts of informal care remains a great challenge for economic evaluation. Hence the paper presents an original analysis of the economic value of informal care. Our main objective was to explore the association between informal caregivers’ willingness to pay (WTP) to be replaced and different aspects of both the burden and the benefits of caring.

Data & Methods: 201 people who cared for elderly patients suffering from AD, depression or “old age” were selected from the fourth wave of informal caregivers’ panel data collected by the French poll institute BVA associated with the-Novartis Foundation. Informal caregivers’ characteristics which could influence ability or inability to estimate their WTP to be replaced were mapped using a multiple correspondence analysis (MCA). We ran binary and ordered logistic regressions to further analyze the WTP to be replaced on the one hand and the association between informal caregiver’s WTP and several variables which approximate burden and benefits of caring and socioeconomic variables on the other hand.

Results: Mapping of informal caregivers’ characteristics showed a clear distinction between the opportunity costs of caring dimension and that of intangible costs and benefits of caring. An inverse relation was found between ability to estimate WTP and intangible benefits from caring (p<0.01), and a positive association was observed between inability to estimate WTP and negative impacts of informal care (p<0.01). Finally, care recipients’ ability to make his own choice related to care was the only factor having a decreasing influence on WTP (p<0.05), whereas negative impacts of caring increased with WTP (p<0.05).

Policy implications: Informal caregivers who are not willing to pay to be replaced may suffer from burden of caring and those who have high WTP may benefit from caring. In both cases, we call into question the relevance of a hypothetical generalized financial compensation system as the optimal way to compensate negative externalities of informal care. Congruent policies could target either professional caregivers’ training or respite care service investment.

P11.3. Estimating the economic and social costs of dementia in Ireland

Sheelah Connolly, Paddy Gillespie, Eamon O’Shea, Suzanne Cahill, Maria Pierce

Dementia is a costly condition and one that differs from other conditions in the way these costs are distributed across different sectors. Despite Government rhetoric about supporting people to remain in their own home in Ireland, community based services for those with dementia remain fragmented and partial, resulting in a significant proportion of those with dementia residing in long-stay residential care. This has significant budgetary implications given the very high cost of residential care. For those remaining in the community, the burden of care largely falls on family and friends, imposing significant costs on caregivers and raising concerns about the sustainability of that care in the longer term.

Cost of illness studies, which require the identification, measurement and valuation of all resources in relation to a particular disease, are a useful way to document the origins and extent of care burden in relation to that diseases. The aim of the current paper was to estimate the economic and social costs of dementia in Ireland in 2010.

Unit cost data were applied to resource use for the dementia population in Ireland in order to generate an estimate of the cost of dementia across four main categories – informal care for those living in the community, health and social care, long-stay care and productivity losses associated with premature death from dementia.  A combination of national data sets and local and survey data, extrapolated to the national level, were used to estimate the number of people with dementia, their resource use and the associated unit costs. 

With an estimate of 41,740 people with dementia, the total baseline annual cost of dementia was found to be over €1.69 billion, 48% of which was attributable to the informal care provided by family and friends and 43% to residential care. Formal health and social care comprised only 9% of the total cost of dementia in Ireland.

Due to the impact of demographic ageing in the coming decades and the expected increase in the number of people with dementia, family caregivers and the general health and social care system will come under increasing pressure to provide adequate levels of care. Without a significant increase in the amount of resources devoted to dementia, it is unclear how the system will cope in the future.

P11.4. Knowing profiles and indicators of cost of AD in the south of Spain

Ruiz-Adame Reina Manuel, González Camacho Carmen2

As the WHO estimate, the proportion of people with dementia will keep increasing, the figures of AD in 2010 was estimated around 35,6 millions, and the predictions were to double in 2030 and to triple in 2050. The need for care will also induce an increment in the direct an indirect costs that will have to be hold up by the socio-sanitary national protections systems. In Spain, epidemiologic studies shows that there is a prevalence of the 6% of people upper 65 years old with AD, but this figures rise up to 30% for people upper 85.

The aim of our study is : 1) to know the profile of the caregivers and patients we have now at the south of Spain, 2) Identify the class of service they demand since the application of the new Promotion of Personal Autonomy and Long Term Care Law (system for the autonomy and dependence attention- SADA), 3) To establish hypothesis for a further study of the indirect cost of AD.

The study has been made in Andalusia with the collaboration of more than 41 AD´s associations (ADA). We have had interviews with 450 families, who filled up a test made by a social worker or a psychologist linked to the ADAs .

Some of the results shows that most of the caregivers were women (71%), daughter (63%) or spouse (27%), who live with the patient, and with a basic academic level (44%). The laboral situation was not linked with the role of caregiver (85%), and they have not refused any job offer due to that role (80%). About the services more demanded, it is the Day Care Unit (DCU) the most frequent (51%), followed by the home assistance (20,46%), and psychostimulations workshops (12%). The assistance most valued for families was the intensive in time, so that was the reason why they preferred programs more intensive in hours per day.  Living in a nurse or elderly home is very infrequent (21,66%) but when this option is chosen it is for long term care (79%).

Most of the expenditure in health services are covered by the National Health System, but there is an important amount of outgoings (in 44% of the families interviewed) due to parapharmacy that are supported by the caregivers

All the studies reviewed, and ours too, shows that the more important side of the costs of AD is the one provide by the social system and in particular by the informal cares (families).

It is represents a growing aspect to be bear in mind for policy makers, and specially when the caregivers profile is changing and it is going to be needed to prepare new social services for a new reality, which is essential to assess the contribution of the cost, and especially to know the value of indirect cost provided for the family

P11.5. Dementia and pathways of health service utilization in Austria: A record linkage study in a country with a fragmented provider payment system

Heinz Katschnig, Florian Endel, Gottfried Endel, Sonja Scheffel, Barbara Weibold, Peter Filzmoser

Austria, a federal country with 8.4 million inhabitants has a fragmented health care provider payment system with 19 different mandatory social health insurance institutions, which together cover more than 98% of the population. Service utilization is recorded in many different databases, with different structures and semantics, and only partly with a unique patient identifier (UPI). The aim of the present study was to identify pathways of care of patients with dementia. Since their first contact with health services usually occurs in the primary care and outpatient sector, where no coded diagnoses are reported in Austria, prescription of anti-dementia drugs (ATC N06D) was taken as a proxy for case definition. The methodological challenge was to link records of many different databases. A countrywide database (GAP-DRG) covering the whole population was established for 2006 and 2007, in which service utilization records can be linked after pseudonymisation of the UPI and by special matching methods. The database covers the whole range of health services, including hospital, specialized outpatient and primary care, as well as pharmacies. 144.457 patients who had a prescription for an anti-dementia drugs filled in the fourth quarter of 2006 were selected for the study. 8.596 patients died in 2007 and were excluded, leaving 135.861 patients for the pathway study. In 2007 only 1% of these patients were admitted to a psychiatric bed, but 34% to a non-psychiatric bed in a general hospital, 14% attended a psychiatric outpatient service, but 74,4% visited an non-psychiatric outpatient service; 94.4% saw a general practitioner. Co-prescription for physical disorder and type of prescribed anti-dementia agent were found to be important determinants of service utilization. Overall, the study shows that record linkage across multiple routine databases is possible and can provide important information on pathways of care.



Last Updated: Thursday 15 November 2012