ADI and Karolinska Institutet launch report on estimates of informal care

4 July 2018 - ADI and Karolinska Institutet today launched a timely report focussing on global estimates of informal care.  

This report sets out to answer some of the questions raised in the 2015 World Alzheimer Report. In the 2015 Report, ADI presented estimates of the global societal economic impact of dementia. The global costs then were estimated to be US$ 818 billion, a figure now (2018) surpassing US$ 1 trillion per year. Of these costs, 40% were related to informal care, 40% to the social care sector and 20% to the medical sector. However, these costs were distributed in an uneven way: 87% occurred in high-income countries, and in low-income countries, costs of informal care constituted 69% of the costs, while the corresponding cost for high-income countries were 38%.

The primary aims of this new report are to:

  • present global estimates of informal care hours, 
  • compare the global distribution of caregiver time estimates with that of costs
  • highlight gender patterns.

Although a complex area, it is evident that the contribution of informal caregivers is substantial. Most informal caregivers are family members and many caregivers express positive experiences in this situation. However, being an informal caregiver can also be stressful in terms of coping, depression, impact on social networks and work patterns and morbidity.

In this report we estimate that the annual global number of informal care hours provided to people with dementia living at home was about 82 billion hours in 2015, equating to 2,089 hours per year or 6 hours per day. This is the equivalent of more than 40 million full-time workers in 2015, a figure that will increase to 65 million full-time workers by 2030.

As 60% of people with dementia live in lower and middle-income countries (a proportion that continues to increase), and as almost all (96%) of people with dementia in lower and middle-income countries live at home, this has a significant impact on the global distribution of caregiver time.

The report also reveals the continued disproportionate impact of dementia on women. Women contribute to 71% of the global hours of informal care, with the highest proportion in low-income countries.

Societal changes already in progress all over the world – shifting family structures, generational split, migration and the increasing participation of women in the workforce – will, for dementia care, result in a shift from informal care to a greater need for different kinds of formal care (home support, day care, long-term care). This scenario presents a great challenge for society in terms of financing, staff recruitment and training. Employers will also need to be aware of the growing number of employees that will be affected by caregiving and recognize that the caregiving role may need further formal recognition in labour legislation.

The report was authored by Prof Anders Wimo, Aging Research Center, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet and Stockholm University; Prof Serge Gauthier, McGill Center for Studies in Aging, Douglas Mental Health Research Institute, Montreal; and Prof Martin Prince, Global Observatory for Ageing and Dementia Care, Institute of Psychiatry, Psychology and Neuroscience, Health Service and Population Research Department, King's College London.