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On July 4, Alzheimer’s Disease International (ADI) released the report "Global estimates of informal care". It shows, among other things, that women around the world contribute with over 58 billion hours of unpaid work per year, or 40 million full-year jobs, to take care of people with dementia. They also account for a disproportionate part, 71 percent, of informal care globally.

So it really is a women's issue, emphasizes the report's head writer Anders Wimo, Professor at Karolinska Institute and general practitioner in Bergsjö, Hälsingland in Sweden.

There are significant differences between high and low income countries. In Sweden, it is primarily the spouse who is responsible for the informal care of dementia while globally it is the children, grandchildren or stepdaughters that are the most heavily involved.

It has major consequences for the entire social structure, for the labour market and for women's opportunities to support themselves. In addition, these low-income countries often have an extremely limited infrastructure for the care of older people, says Anders Wimo, and continues:

We also see trends that the social structure is changing in many of these low-income countries. There is great internal migration, the generations are split up, making it more difficult to function as an informal carer for dementia, and this, in combination with lack of an elderly care infrastructure, is an extremely worrying scenario.

Looking at the challenges in Sweden, it is nothing compared to the challenges globally. Although Anders Wimo does not want to trivialize the situation at home.

"It's not easy in Sweden, that's not what I mean. Carers' prerequisites for acting as informal carers can be difficult, the survivor or spouse is also fragile, children and grandchildren often live far away. Sweden will also have a significant increase in the number of people suffering from dementia by 2020, since those born in the 40's will be 80 years or older. So even in Sweden we face major challenges.

"But at the same time, we actually have home care, day care, family support, short-term care and special accommodations. The future challenge in Sweden is to ensure that this infrastructure for relatives is expanded and dimensioned, given that we are getting older.

Estimating the number of hours worked or the cost of informal care of people with dementia is no easy task.

In the report on "Dementia Diseases Societal Costs 2012" released by the National Board of Health and Welfare Sweden in 2014, Anders Wimo and his co-authors estimated the total care costs of dementia in Sweden to 63 billion Swedish Crowns, of which 10 billion were related to informal carers’ contributions.

"But it depends on how to count if the need for supervision had also been calculated, the amount of the family's efforts had become significantly higher," points out Anders Wimo.

Gaining the global perspective also poses a particular challenge.

"It's a bit tricky to count because some countries lack data. In these cases, we have had reasonable estimates of the number of hours suspended, says Anders Wimo.

But there is no doubt that it is about high costs. In addition to the unpaid work of the relatives, according to the report from ADI, dementia became a billion-dollar disease 2018.

"This corresponds to approximately one percent of global GDP for a single disease," says Anders Wimo.

 

Read the report - Global estimates of informal care

Read the report - Disease Diseases' Social Expenses 2012

Text: Erik Skogh, Translation Richard Ilett

Photo: The picture makers

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