Care Needed

Executive summary

Dementia is a dreadful disease and a growing global challenge. The number of people living with dementia across the OECD reached nearly 19 million people in 2017, while millions of family members and friends provide care and support to loved ones with the condition throughout their lives. Beyond the personal and emotional toll of dementia, its financial costs are vast. The worldwide health and social costs of dementia were estimated to reach USD 1 trillion per year in 2018. Dementia is strongly associated with age. This makes the ageing of the population in many OECD countries the main factor associated with the growing dementia prevalence. As the share of the population aged above 80 years continues to rise, and until a cure or disease modifying treatment is found, the number of people living with dementia will continue to grow, and is likely to reach nearly 41 million people in the OECD by 2050.

Despite significant research efforts, much about the condition remains a mystery. No treatments have yet been developed that can effectively cure or halt the progression of dementia. Many recent late stage clinical trial failures have frustrated efforts and investment by the pharmaceutical industry. Further, today, too many people living with dementia go without a diagnosis. Even when they may be diagnosed, care systems are often fragmented, and the stigma surrounding dementia has led many people to believe that nothing can be done.

Yet the lack of a cure does not mean that there are no options. A range of beneficial services are available that can improve the health and quality of life of people living with dementia. However, in many cases, too few people have been able to access them. OECD countries urgently need to improve access to and quality of these services.

In recent years, dementia has received growing attention as governments begin to recognise the scope of the challenge ahead. As many as 22 OECD countries have developed national plans and strategies for addressing dementia, and have moved to make diagnosis and follow-up care more accessible and of higher quality. Treatment and care services can be further improved, and better monitoring and comparing of processes and outcomes will play an important role.

This report provides a detailed look at how OECD countries currently care for people living with dementia throughout their lives, from when they receive a diagnosis to the end of their lives. It lays out a number of key findings and lessons that help inform care for people with dementia:

Most countries remain poorly equipped to identify dementia

• Identifying dementia is important to developing and executing an effective response. A dementia diagnosis is one crucial step in accessing care and support, and receiving a timely diagnosis is important to take advantage of available treatment and care. Yet fewer than 40% of countries are able to estimate diagnosis rates nationally, and only two countries (Denmark and the United Kingdom) have set specific targets to improve diagnosis rates.

• Primary care serves as the first point of contact for people concerned about memory problems in 26 OECD countries. However, physicians average just 12 hours of dementia training during medical school, and very few countries provide financial or other incentives to encourage dementia-related training and continued professional development. This means that in many cases, primary care doctors are poorly prepared to diagnose dementia and correctly identify only around 50‑75% of dementia cases.

• A firm diagnosis requires access to specialists, which is uneven across countries. The density of specialists who diagnose dementia varies more than three-fold across the OECD. At least 25 OECD countries have set up specialist centres called memory clinics to help with diagnosis. However, the characteristics and accessibility of these clinics are very heterogeneous. Only five countries (Denmark, France, the Netherlands, Switzerland, and the United Kingdom [England]) have developed or are in the process of developing guidelines and standards for the care delivered through these specialty centres.

• Data on dementia and dementia care remain extremely limited and can hamper efforts to improve quality of care and outcomes. Basic information, such as diagnosis rates, remains restricted even in countries with otherwise strong health data infrastructure. Just eight OECD countries measure diagnosis rates for dementia on a national level.

• Many OECD countries are seeking to improve the data landscape by linking data from different national datasets. However, important areas of the health system are frequently excluded from regular data linking. Many of the less frequently linked data sets include areas of the health system, such as primary care and long-term care, that are paramount for monitoring and improving dementia care. Some 45% of countries can link primary care with other data sources, but just 9% reported regularly doing so to monitor health care quality and performance. Five OECD countries (Canada, Finland, Israel, Korea, and the United Kingdom) regularly link long-term care data with hospital and mortality data, while only Korea and the United Kingdom regularly link primary care data with other data sources.

Initiatives to make communities inclusive and safe for people with dementia are fragmented

• Many people with dementia wish to live at home, and with the proper support they are often able to do so long after they have been diagnosed. Over 90% of OECD countries have developed at least some dementia-friendly community initiative to reduce stigma and improve the community response to people living with dementia. They include services such as social services, police forces and pharmacies, as well as training local and national businesses on how to engage with people living with dementia.

• Governments can play an important role in bringing attention to dementia-friendly activities. In most cases, however, such programmes remain ad-hoc and availability varies dramatically within countries, with just two countries (Japan and the United Kingdom) having developed explicit targets related to dementia-friendly communities.

• Informal carers provide the majority of dementia care, with the costs of informal care estimated to represent between 40-75% of the total costs of caring for dementia. Caring for a person with dementia is more strenuous than many other types of caring. Carer support interventions have most often been designed for informal carers more broadly, and do not necessarily focus on the needs of dementia carers, whose needs can be greater than those caring for people with other conditions.

• The availability of respite care and training opportunities remains weak in many countries. In most cases, the availability of respite care depends on community capacity, and programmes are infrequently tailored to the needs of people with dementia and their carers. Offering more dementia-specific respite, such as respite holiday care programmes offered in Austria, can allow carers to relax while also being assured that their loved ones are being well cared for.

• Navigating the health and social care services available to people with dementia and their families can be difficult. Care co-ordination pathways to help people better access disparate services are particularly important for people with complex or rare cases of dementia. At least six OECD countries – Australia, Denmark, Estonia, France, the Netherlands, and Norway – have developed specialised care pathways for people with early or complex dementia.

The quality of care for people with advanced dementia is often poor and can result in worse health outcomes

• New data collected for this report confirm that the quality of care for people with advanced dementia remains in many cases poor. Despite widespread clinical agreement that antipsychotic medications should not be used to manage most difficult behaviour in dementia, rates of antipsychotic prescribing vary by a factor of more than two across the OECD. On average, one in twenty people aged 65 and over receives a prescription of antipsychotics across OECD countries.

• While dementia-specific training for formal care staff is available, incentives to encourage care workers to improve their dementia management skills remain the exception rather than the rule. Just four countries (Denmark, the Netherlands, Norway, and Sweden) have developed financial incentives targeted to care facilities or local authorities for further dementia training. Frameworks to recognise dementia care competencies, such as those developed in New Zealand and the United Kingdom (England), can help to better monitor the skills level of care workers and identify where further training is needed.

• The majority of people with dementia in care facilities continue to live in homes that are not designed for the needs of people with dementia, despite the fact that close to 70% of nursing home residents have some form of cognitive impairment. Only four countries – Denmark, Ireland, Norway, and the United Kingdom (England) – have developed design guidelines and advice to make care facilities more suitable for the needs of people with dementia.

• In recent years, a number of innovative residential care models have emerged. Innovative arrangements usually comprise of living environments where people with dementia share a home with other residents, their families and staff, and can include small-scale living communities, multi-generational homes, and dementia villages. Yet spaces for people with dementia in innovative facilities are severely limited in every OECD country and facilities that provide the latest models of care are often private and very costly to patients.

• Inappropriate care can result in unnecessary or avoidable visits to the hospital, which can lead to even worse health outcomes for people with dementia. In some hospitals, people with dementia make up a quarter of all patients, but many are admitted for other illnesses or accidents without the hospital aware of their condition. Moreover, hospitals are not aware that a patient has dementia in most cases, even where a patient has already received a diagnosis. This can compromise their ability to deliver proper care for people with dementia. Improving hospital coding will help to better determine the care people with dementia receive, as well as to track and support efforts to reduce hospital (re)admissions.