The impact of informal care
Cost of dementia
by David McDaid, Research Fellow , London School of Economics (UK)
It is important to recognise that there are both rewards and difficulties associated with caregiving; yet often, the positive aspects may be overlooked. This desire and willingness of family members to provide care can though mean that policy makers and other stakeholders are tempted treat informal care as a ‘free resource’. However, it can entail significant economic costs for individuals and society. Economic analysis is primarily concerned with the opportunity costs of caring; i.e. what would have been done had an individual not been caring.
Caring for someone with dementia can sometimes be, literally, a 24-hour-a-day activity. While the availability of family carers may reduce the need for professional support, carers will incur a loss of time (and hence a cost) which they could have used for work, or to pursue leisure activities. Individuals may become isolated from their social network of family and friends as the disease progresses and caregiving becomes a full-time occupation (1). Evidence of high levels of distress and depression among carers of people with dementia can be seen in many studies of service users and in community surveys (2-6). They may also incur additional out-of-pocket expenses to support a relative financially. There can also be adverse impacts on their physical health, e.g. as a result of the strains of helping an individual to cope with essential activities of daily living.
Inclusion of the full costs of caring can thus be very important in a comprehensive economic analysis and could make a difference when decision makers have to determine whether it is cost-effective to introduce specific services or programmes to support family caregivers or provide other interventions. It also provides an indication of the costs that may fall on statutory services in future if there is a shortage of such carers due to the ageing of the population in most European countries.
However, because of methodological difficulties in estimating informal care costs, and often too narrow a focus solely on the health care system alone, the cost to family carers has often been ignored within economic analyses. In particular, identifying the best alternative use of time is not always easy, particularly if a family carer already has been responsible, to some extent, for an individual - e.g. a spousal carer already undertaking a range of activities that benefit the whole household. This has led to a considerable variation in estimates of the cost of caring with estimates for Alzheimer’s Disease and other dementias ranging from 36 to 85 per cent of total costs in one review (7).
Improving our understanding firstly of what is known about its actual impacts on caregivers in different settings and contexts across Europe is a key element of our literature review. A second issue is to look at the different ways in which the contributions of informal caregivers can be measured and the valuations attached to such contributions. Again variations in methods used can lead to substantially different estimates in the costs of care emerging. In undertaking this work it is important to recognise that work assessing the economic value of informal caring has not been restricted to dementia alone; estimates can for instance be found for other mental disorders as well as for physical diseases (8, 9). Our literature review also looks at the transferability and relevance of measurement and valuation methods used for carers of people living with other health problems.
Over 3000 papers meeting our inclusion criteria were initially identified, including more than 2,687 (reduced to 2016 after limits applied) in Medline alone. Final inclusion figures are still being processed with some work on databases to be completed, with some data still needs to be entered into Access database. (See Next Steps). Few additional papers were found in Econlit for instance – in total 192 papers were initially identified – this was filtered down to 79 papers the majority of which were identified through Medline. Overall more than one third of papers focus on Alzheimer’s Disease and Other Dementia’s.
Our initial analysis indicates that the evidence base on both the costs of informal care for Alzheimer’s Disease and other dementias as well as the inclusion of informal care in estimates of costs in other areas is increasing with recent estimates identified across a number of European countries e.g. (10-13) as well as being a component of costs in some evaluations of drug and non-drug interventions e.g. (14-18). In addition the literature on informal care costs from other parts of the world also continue to increase e.g.(19). There are also a number of studies which have sought to project the long term costs of Alzheimer’s Disease and other dementia’s across Europe and elsewhere– to varying extents these have sought to incorporate the costs of informal care (20).
Another approach is to look at the extent to which end of life transfer of assets compensates individuals for informal care activities (21). There have also been some developments in the way in which caregiving activities are measured and in particular not only to more accurately identify time spent caring, but also to better identify subjective and objective burden (22) as well as ‘process utility’ or immediate rewards from the caregiving experience (23). One continuing limitation generally appears to be a lack of information from the context of central and eastern Europe, although one small exploratory study of the costs of informal care for dementia in Turkey can be identified (24).
- Leinonen E, Korpisammal L, Pulkkinen LM, Pukuri T. The comparison of burden between caregiving spouses of depressive and demented patients. Int J Geriatr Psychiatry. 2001 Apr;16(4):387-93.
- Livingston G, Manela M, Katona C. Depression and other psychiatric morbidity in carers of elderly people living at home. BMJ. 1996 Jan 20;312(7024):153-6.
- Murray J, Schneider J, Banerjee S, Mann A. EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: II--A qualitative analysis of the experience of caregiving. Int J Geriatr Psychiatry. 1999 Aug;14(8):662-7.
- Coen RF, O'Boyle CA, Coakley D, Lawlor BA. Individual quality of life factors distinguishing low-burden and high-burden caregivers of dementia patients. Dement Geriatr Cogn Disord. 2002;13(3):164-70.
- Clipp EC, George LK. Dementia and cancer: a comparison of spouse caregivers. Gerontologist. 1993;33(4):534-41.
- Thomas P, Hazif-Thomas C, Delagnes V. La vulnérabilité de l’aidant principal des malades déments à domicile. L’étude Pixel. . Psychologie et Neuropsychiatre Vieilissement 2005;3:207-20.
- McDaid D. Estimating the costs of informal care for people with Alzheimer's disease: methodological and practical challenges. Int J Geriatr Psychiatry. 2001 Apr;16(4):400-5.
- Langa KM, Valenstein MA, Fendrick AM, Kabeto MU, Vijan S. Extent and cost of informal caregiving for older Americans with symptoms of depression. Am J Psychiatry. 2004 May;161(5):857-63.
- Schulze B, Rossler W. Caregiver burden in mental illness: review of measurement, findings and interventions in 2004-2005. Curr Opin Psychiatry. 2005 Nov;18(6):684-91.
- Lopez-Bastida J, Serrano-Aguilar P, Perestelo-Perez L, Oliva-Moreno J. Social-economic costs and quality of life of Alzheimer disease in the Canary Islands, Spain. Neurology. 2006 Dec 26;67(12):2186-91.
- Jonsson L, Eriksdotter Jonhagen M, Kilander L, Soininen H, Hallikainen M, Waldemar G, et al. Determinants of costs of care for patients with Alzheimer's disease. Int J Geriatr Psychiatry. 2006 May;21(5):449-59.
- Scuvee-Moreau J, Kurz X, Dresse A. The economic impact of dementia in Belgium: results of the National Dementia Economic Study (NADES). Acta Neurol Belg. 2002 Sep;102(3):104-13.
- Sicras A, Rejas J, Arco S, Flores E, Ortega G, Esparcia A, et al. Prevalence, resource utilization and costs of vascular dementia compared to Alzheimer's dementia in a population setting. Dement Geriatr Cogn Disord. 2005;19(5-6):305-15.
- Fagnani F, Lafuma A, Pechevis M, Rigaud AS, Traykov L, Seux ML, et al. Donepezil for the treatment of mild to moderate Alzheimer's disease in France: the economic implications. Dement Geriatr Cogn Disord. 2004;17(1-2):5-13.
- Antonanzas F, Rive B, Badenas JM, Gomez-Lus S, Guilhaume C. Cost-effectiveness of memantine in community-based Alzheimer's disease patients: An adaptation in Spain. Eur J Health Econ. 2006 Jun;7(2):137-44.
- Pickard L. The Effectiveness and Cost-effectiveness of Support and Services to Informal Carers of Older People London; 2004.
- Marin D, Amaya K, Casciano R, Puder KL, Casciano J, Chang S, et al. Impact of rivastigmine on costs and on time spent in caregiving for families of patients with Alzheimer's disease. Int Psychogeriatr. 2003 Dec;15(4):385-98.
- Wimo A, Winblad B, Stoffler A, Wirth Y, Mobius HJ. Resource utilisation and cost analysis of memantine in patients with moderate to severe Alzheimer's disease. Pharmacoeconomics. 2003;21(5):327-40.
- Harrow BS, Mahoney DF, Mendelsohn AB, Ory MG, Coon DW, Belle SH, et al. Variation in cost of informal caregiving and formal-service use for people with Alzheimer's disease. Am J Alzheimers Dis Other Demen. 2004 Sep-Oct;19(5):299-308.
- Fox PJ, Kohatsu N, Max W, Arnsberger P. Estimating the costs of caring for people with Alzheimer disease in California: 2000-2040. J Public Health Policy. 2001;22(1):88-97.
- Brown M. Informal Care and the Division of End-of-Life Transfers. Journal of Human Resources 2006;41(1):191-219.
- van Exel NJ, Koopmanschap MA, van den Berg B, Brouwer WB, van den Bos GA. Burden of informal caregiving for stroke patients. Identification of caregivers at risk of adverse health effects. Cerebrovasc Dis. 2005;19(1):11-7.
- Brouwer WB, van Exel NJ, van den Berg B, van den Bos GA, Koopmanschap MA. Process utility from providing informal care: the benefit of caring. Health Policy. 2005 Sep 28;74(1):85-99.
- Zencir M, Kuzu N, Beser NG, Ergin A, Catak B, Sahiner T. Cost of Alzheimer's disease in a developing country setting. Int J Geriatr Psychiatry. 2005 Jul;20(7):616-22.
Last Updated: Thursday 08 October 2009