ONLY a quarter of countries worldwide have a national policy, strategy or plan for supporting people with dementia and their families, according to the World Health Organization’s (WHO’s) ‘Global status report on the public health response to dementia’.

Half of these countries are in WHO’s European region, with the remainder split between the other regions. Yet even in Europe, many plans are expiring or have already expired, indicating a need for renewed commitment from governments.

At the same time, the number of people living with dementia is growing according to the report: WHO estimates that more than 55 million people (8.1 per cent of women and 5.4 per cent of men over 65 years) are living with dementia. This number is estimated to rise to 78 million by 2030 and to 139 million by 2050.

Dementia is caused by a variety of diseases and injuries that affect the brain, such as Alzheimer’s disease or stroke. It affects memory and other cognitive functions, as well as the ability to perform everyday tasks. The disability associated with dementia is a key driver of costs related to the condition. In 2019, the global cost of dementia was estimated to be US$1.3 trillion. The cost is projected to increase to US$1.7 trillion by 2030, or US$2.8 trillion if corrected for increases in care costs.

“Dementia robs millions of people of their memories, independence and dignity, but it also robs the rest of us of the people we know and love,” said Dr Tedros Adhanom Ghebreyesus, director general of the WHO. “The world is failing people with dementia, and that hurts all of us. Four years ago, governments agreed a clear set of targets to improve dementia care. But targets alone are not enough. We need concerted action to ensure that all people with dementia are able to live with the support and dignity they deserve.”

More support needed

The report highlights the urgent need to strengthen support at national level, both in terms of care for people with dementia, and in support for the people who provide that care, in both formal and informal settings.

Care required for people with dementia includes primary health care, specialist care, community-based services, rehabilitation, long-term care, and palliative care. While most countries (89 per cent) reporting to WHO’s Global Dementia Observatory say they provide some community-based services for dementia, provision is higher in high-income countries than in low- and middle-income countries. Medication for dementia, hygiene products, assistive technologies and household adjustments are also more accessible in high-income countries, with a greater level of reimbursement, than in lower-income countries.

The type and level of services provided by the health and social care sectors also determines the level of informal care, which is primarily provided by family members. Informal care accounts for about half the global cost of dementia, while social care costs make up over a third. In low- and middle-income countries, most dementia care costs are attributable to informal care (65 per cent). In richer countries informal and social care costs each amount to approximately 40 per cent.

In 2019, carers spent on average five hours a day providing support for daily living to the person they were caring for with dementia; 70 per cent of that care was provided by women. Given the financial, social and psychological stress faced by carers, access to information, training and services, as well as social and financial support, is particularly important. Currently, 75 per cent of countries report that they offer some level of support for carers, although again, these are primarily high-income countries.

New initiative to better coordinate dementia research

A series of unsuccessful clinical trials for treatments for dementia, combined with the high costs of research and development, led to declining interest in new efforts. There has, however, been a recent increase in dementia research funding, mainly in high-income countries such as Canada, the United Kingdom and the United States of America. The latter increased its annual investment in Alzheimer’s disease research from US$ 631 million in 2015 to an estimated US$2.8 billion in 2020.

“To have a better chance of success, dementia research efforts need to have a clear direction and be better coordinated,” said Dr Tarun Dua, head of the Brain Health Unit at WHO. “This is why WHO is developing the Dementia Research Blueprint, a global coordination mechanism to provide structure to research efforts and stimulate new initiatives.” An important focus of future research efforts should be the inclusion of people with dementia and their carers and families. Currently two-thirds of countries reporting to the Global Dementia Observatory involve people with dementia “rarely” or not at all.

Good progress in awareness-raising campaigns

More positively, countries in all regions have made good progress in implementing public awareness campaigns to improve public understanding of dementia, with strong leadership by civil society. Two-thirds of countries reporting to the Observatory have run awareness-raising campaigns. And two-thirds have taken action to improve the accessibility of physical and social environments for people with dementia and to provide training and education to population groups outside the health and social care sector, such as volunteers, police, fire services and first responders.