This chapter summarises the main findings of the report and explains the methodology used. It provides an overview of the state of dementia in OECD countries. In discussing the impact of dementia in OECD countries today and in the years to come, it makes the case for why greater attention to the condition and more concerted policy efforts are needed.
Care Needed
Improving the Lives of People with Dementia
OECD Health Policy Studies
Chapter 1. Key findings and conclusion
Abstract
The statistical data for Israel are supplied by and under the responsibility of the relevant Israeli authorities. The use of such data by the OECD is without prejudice to the status of the Golan Heights, East Jerusalem and Israeli settlements in the West Bank under the terms of international law.
Nearly 19 million people across the OECD are living with dementia. Many more are affected by the disease: millions of family members and friends provide care or otherwise support their loved ones throughout their lives. Receiving a dementia diagnosis remains a shattering experience. Until a cure or disease-modifying treatment for dementia is developed, the progress of the disease cannot be slowed or stopped. Nevertheless, the quality of life and level of impairment that people experience can be improved. OECD countries already offer a range of treatments and services that can improve the lives of people with dementia, even in the absence of a cure. Medications, psychosocial interventions, dementia-friendly community initiatives and high-quality health and long-term care services can help people with dementia live more independently and maintain a higher level of wellbeing.
However, significant barriers to access remain and many people with dementia simply do not get the care they need to improve their lives or the lives of those close to them. Furthermore, many millions of cases of dementia go undiagnosed or are diagnosed late. Even when people receive services, these may fail to fully address their needs, and outcomes can be poor.
This report presents the state of the art in comparing dementia treatment and care, sets out estimates of the burden of dementia – diagnosed and undiagnosed – across OECD countries, reports on the state of dementia care across the OECD, and identifies the policies and practices that have been put in place to improve the quality of life for individuals living with dementia and their families. It builds on previous OECD work on dementia care, in particular Addressing Dementia: the OECD Response, which gave an overview of the evidence around dementia care and identified ten key objectives that all countries should consider when setting dementia policy (OECD, 2015a). This report deepens the analysis by comparing how these objectives are being addressed in different countries, both in terms of the policies that are being implemented and the outcomes that are being achieved. This report compares dementia care in OECD countries, and explores how better comparisons can be made in the future.
The report shows that countries have enhanced their efforts to provide high-quality dementia care during diagnosis, early and advanced dementia, but improving measurement is necessary for enhancements in care quality and outcomes for people with dementia. Chapter 2 presents an overview of recent efforts in countries to diagnose dementia and document and track people with dementia in the health system. It highlights in particular that diagnosis rates for dementia are low and efforts to expand diagnosis are often aimed at physicians underprepared to handle the job. Chapter 3 finds that while there is a growing body of good practice for community-based care, care co-ordination, dementia-friendly initiatives and support for informal carers must be further developed and more regularly measured to further progress. Finally, the research in Chapter 4 reveals that quality of care for advanced dementia remains poor, including high rates of antipsychotic prescribing which remain widespread despite the fact that such approaches are widely discouraged across the OECD.
1.1. Dementia will have a growing human and financial cost to society
1.1.1. Population ageing means dementia prevalence will continue to rise
Encompassing a range of health conditions, dementia refers to symptoms of memory and cognitive difficulties that can eventually interfere with the everyday life and activities of people living with dementia. While Alzheimer’s disease is the most common form of dementia, other diseases exhibit similar symptoms, including vascular dementia, dementia with Lewy bodies, and Parkinson’s disease.
Despite significant research efforts, much about dementia remains unknown. While it is clear that dementia does not represent a necessary outcome of ageing, dementia prevalence rises rapidly with age: while just over 2% of people between 65-69 years live with dementia, prevalence rises to over 40% for those aged over 90 (Figure 1.1).
Figure 1.1. Prevalence of dementia across all OECD countries, by age group
Source: OECD Health Statistics 2017, http://dx.doi.org/10.1787/health-data-en.
This makes the rapid ageing of the population in many OECD countries particularly relevant for dementia. The share of the population aged over 65 in OECD countries has risen quickly in recent years, and will continue to grow in the coming decades. On average, the proportion of the population aged over 65 rose from less than 10% in 1960 to 17% in 2015, and is projected to reach 28% by 2050 (OECD, 2017a). Many of these people are living with dementia. In Canada, for example, dementia prevalence in the population 65 and over reached 7.1% in 2013 (Public Health Agency of Canada, 2017). Moreover, the share of the population over 80 in the OECD is projected to increase from nearly 5% in 2015 to more than 10% by 2050 (OECD, 2017a) (Figure 1.2). As populations continue to age, the prevalence of dementia in OECD countries is also expected to rise, from an estimated 18.7 million people in 2017 to 40.9 million by 2050. The pace of population ageing has been slower in non-OECD countries, although it is expected to accelerate. In large partner countries including Brazil and China, less than 2% of the population was 80 years and over in 2015, though this share is expected to reach close to 7% in Brazil and more than 8% in China by 2050.
Figure 1.2. Trends in the share of the population aged over 80 years, 1990-2050
Note: Partner countries include Brazil, China, Colombia, India, Indonesia, Lithuania, Russia, Costa Rica and South Africa.
Source: OECD Historical Population Data and Projections Database, 2017.
The personal and financial costs of dementia are immense. Globally, dementia represents one of the leading causes of disability for elderly adults. It is estimated that the health and social costs of dementia reached over USD 1 trillion per year in 2018 (Alzheimer’s Disease International, 2015).
Figure 1.3. Dementia prevalence
Source: OECD Health Statistics 2017, http://dx.doi.org/10.1787/health-data-en.
As of today, there is no cure for dementia. Even with billions of dollars spent on research and development, scientists have yet to find a cure or a disease-modifying treatment for dementia. Dementia is an extremely complex disease, and appears to take hold years or even decades before people begin to show common symptoms. This makes drug development for dementia particularly challenging, as researchers and pharmaceutical companies grapple with how to develop and test medications to be used by patients years before symptoms emerge. Promising late-stage clinical trials conducted in recent years have had disappointing results.
In the face of these challenges, attention on whether and how dementia can be prevented in the first place has grown. Some compelling evidence suggests that dementia is associated with many risk factors, including obesity, physical activity, hypertension, smoking, diabetes, hearing loss, and depression. A recent Lancet review suggested that up to one-third of dementia cases can likely be delayed or prevented through preventive measures (Livingston et al., 2017). The risk factors identified for dementia contribute to the development of many diseases, and broad-based prevention strategies targeting health challenges such as obesity, diabetes, or loneliness likely also affect dementia. Nevertheless, the length of time between the development of dementia and onset of symptoms makes it difficult to evaluate the effects of these preventive measures on developing dementia. The long time lag makes it problematic to evaluate, for example, the return on investment from primary prevention strategies on dementia (Livingston et al., 2017; Wittenberg et al., 2017).
A recent report by the National Academies of Science, Engineering and Medicine in the United States found that evidence related to preventive interventions is inconclusive but encouraging, and suggested making available information related to cognitive training, blood pressure management, and physical activity as interventions that may serve a protective role against cognitive decline (Leshner et al., 2017).
In recent years, some evidence has emerged to suggest that the risk of developing dementia can possibly be reduced. Recent longitudinal studies in the United States and United Kingdom (England and Wales) have found that dementia prevalence fell in recent decades (Matthews et al., 2013; Langa et al., 2017). These findings have highlighted the potential of harnessing preventive measures to attenuate the rapid increase in dementia prevalence. Nevertheless, even with declines in dementia prevalence, the rapid ageing worldwide all but guarantees significant growth in the population living with dementia in the coming decades.
In this context, health and social care services are crucial to people who develop dementia and their families. The progress of dementia cannot be stopped until a cure or disease-modifying treatment for dementia is developed. Nevertheless, the quality of life and level of cognitive impairment that people with dementia experience along the way can be much improved. Health and social care services are critical to ensuring that people who develop dementia, and their families, can enjoy a high quality of life throughout the course of their lives.
Box 1.1. Reducing the risk of cognitive impairment: Recent evidence from the FINGER study
Though the precise disease pathway of dementia disorders is not well understood, there is growing evidence to suggest that socioeconomic and lifestyle-related factors can impact the onset of symptoms including cognitive impairment. Physical activity, nutrition, social connections or loneliness, and level of education have all been associated with a risk of developing dementia.
A recent randomised control trial of older Finnish adults, the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER), indicates that risk reduction interventions can impact the development of cognitive impairment (Ngandu et al., 2015). Older adults who were randomised into the intervention group received a multi-domain intervention that included physical activity, advising on nutrition, cognitive training, and follow-up and management for metabolic and vascular risk factors (Kivipelto et al., 2013). After two years of follow-up, levels of cognitive impairment were significantly higher among the control than the intervention group.
Results from the FINGER study indicate that intervening early to reduce the lifestyle risks associated with dementia may help to maintain cognitive function and delay the onset of cognitive impairment. The promising results of the FINGER trial have led to the creation of a network of research studies that aim to replicate the findings of the FINGER study in other contexts, including the United States (US-POINTER) and Singapore (SINGER) (Kivipelto, Mangialasche, & Ngandu, 2018).
1.2. Improving diagnosis to facilitate access to treatment and care
1.2.1. Dementia remains underdiagnosed or is diagnosed too late
A diagnosis allows health professionals to guide people with dementia and their families to the services that will be most helpful to them in order to start preparing for the challenges that the disease will present as it progresses. A formal diagnosis (see Box 1.2) is often explicitly required to qualify and be reimbursed for support and services. Without a diagnosis, people with dementia may be excluded from many support services that can help them to live well in the community for as long as possible.
Box 1.2. What is a dementia diagnosis?
A “diagnosis” means different things depending on the country and health care setting. Most simply, a diagnosis of dementia means that someone is told by a health professional that, in their opinion, they have dementia. In some cases, a diagnosis of dementia enables someone to access certain health and social care services, or would make them eligible for additional reimbursement. This may require specific tests to be carried out, specialists to be consulted, or for the diagnosis to be made in a specified setting.
Promoting access to diagnosis is a priority for many OECD countries and some improvements have been seen in recent years. In the United Kingdom (England), for example, a key target of the Prime Minister’s Challenge on Dementia aimed to increase the diagnosis rate to two-thirds of people estimated to have dementia. Between 2010 and 2017, the diagnosis rate in England rose from 42.6% to 67.6%.
Nonetheless, in most countries the majority of people with dementia have not been diagnosed. In Denmark, for example, the number of people registered with a diagnosis in the national patient registry represents 43.6% of the total number estimated to have dementia. Even those who have been diagnosed may have been identified too late to get benefit from care and the few available treatments. For example, medications such as memantine, donepezil and rivastigmine can help improve cognition and behaviour for certain forms of mild to moderate dementias. Advance care planning allows people with dementia to outline their preferences for care before they develop serious cognitive difficulties, and is in many cases legally binding. If initiated in time, advance care planning can help people with dementia ensure their care follows their wishes, even after they are no longer able to communicate their needs.
1.2.2. Primary care doctors play a key role in dementia diagnosis, but lack support and competences to do so
In 26 OECD countries, primary care doctors act as the first point of contact and can carry out initial testing and provide an indicative diagnosis before referring people on to specialists as necessary (see Table 1.1).
Table 1.1. Dementia diagnosis and care roles carried out by primary care physicians
Source: OECD Dementia Care Policy Interviews 2017.
However, many primary care doctors lack the skills and experience needed to make an effective diagnosis. Some primary care doctors report that they are not confident or comfortable diagnosing dementia and there is evidence that diagnostic outcomes are poor. A survey of general practitioners in Denmark suggested that less than half of primary care practitioners were able to perform a good assessment of dementia (Waldorff and Moller, 2001, Waldorff et al., 2003). Other studies have found that primary care doctors correctly identify only around 75% of dementia cases, and often fail to record the diagnoses they make. The performance of primary care is worse with more complex cases, such as early-stage cognitive impairment (Mitchell et al., 2011).
While primary care doctors should and usually do play a central role in dementia diagnosis, they need the skills and resources to do this job well. One way countries can do this is to develop clinical guidelines to support primary care doctors in making better diagnoses. Such guidelines already exist in at least 16 OECD countries, including Australia, Canada, Chile, Denmark, New Zealand, Sweden, and the United Kingdom, either in the form of dementia-specific guidelines or as broader guidelines that cover dementia and other health conditions. Where guidelines do not exist, countries should consider developing them. However, even where guidelines exist, there is evidence that practice regularly diverges from them. Even after primary care physicians were made aware of clinical guidelines for dementia care in Denmark, for example, no difference was found in how doctors actually practiced.
More may also need to be done to raise awareness of guidelines among doctors and to give them the skills to apply them. In particular, dementia training for primary care doctors is essential for high-quality diagnosis and management. While primary care doctors in all OECD countries receive some dementia training in medical school, this can be limited to a few hours in total. Although continuing education programme on dementia are available at least in 17 OECD countries, the participation rate can be low. No country requires physicians to take dementia training as part of continuing education requirements. Policy-makers need to remove barriers and promote take-up of these training courses among primary care doctors.
More national-level training courses are needed to address geographical variations in availability. Many courses are currently offered locally by non-governmental organisations, which lead to geographical variations in access. More countries could consider developing nationally available courses. In Australia, for example, a nationwide training programme, Dementia Training Australia, has made available dementia care development training opportunities for professional upskilling, and access to accredited dementia care training courses across the country
Removing barriers or providing incentives can increase take-up of dementia training. Primary care doctors may lose income if they attend a training course on dementia, so countries should consider steps to ensure that training courses are offered as part of continuous development programmes that doctors are required to undertake, or that such trainings are reimbursed. In Denmark, for example, physicians are reimbursed for the time taken away from their practice spent in training. Other countries have developed non-financial incentives with a view to increasing take-up rates. The Karolinska Institute in Sweden, for example, offers a Master’s Degree in Dementia Care for Physicians, which confers greater professional recognition to dementia training. However, such schemes remain rare. Countries should assess the barriers to take-up of dementia training among primary care doctors, and consider how they can be reduced. They should also consider providing financial or non-financial incentives to boost participation.
1.2.3. People with dementia should receive an appropriate, timely diagnosis that allows them to access available care and support
Receiving a specific diagnosis can be important for identifying the best available care and treatment. However, in most cases, a full diagnose of dementia still requires advanced diagnostic tools, such as a CT scan or MRI, that are expensive to administer. Moreover, receiving a firm diagnosis requires consultation with specialists, including neurologists and psychiatrists, who are more experienced in dementia care. All of this, in a context where a cure or dementia modifying treatment is still unviable, raises questions about how best to balance the relative costs and benefits of these services.
Memory clinics – clinical settings where health professionals (often specialists) provide advanced diagnostic services – have received growing attention for their role in both diagnosis and management. Though specialists can operate independently, memory clinics have increasingly emerged as an important step in the dementia care pathway.
Box 1.3. What is a memory clinic?
Despite the rising profile of memory clinics in dementia care, what a memory clinic is has different interpretations in different settings. Originally, memory clinics served as specialised clinical settings where health professionals – often neurologists, geriatricians, or psychiatrists – provided advanced diagnostic services.
In this report, we define memory clinics most broadly as any clinical setting where health professionals provide advanced diagnostic services and define themselves, or are defined externally, as memory clinics. More specifically, we consider clinics that provide diagnostic services but no or only limited follow-up care to be diagnostic memory clinics. Memory clinics that are integrated into defined care pathways or otherwise engage in care management, education or training, and other components of dementia care are defined here as comprehensive memory clinics.
At least 25 OECD countries have developed memory clinics (Box 1.3). Memory clinics have also expanded rapidly in recent years. The number of memory clinics doubled in the United Kingdom between 1993 and 2000 and quadrupled in New Zealand between 2003 and 2008. The number of people aged 65 years and over per memory clinic varies seven-fold across countries, from more than 170 000 people 65 and over per memory clinic in Belgium to about 23 000 per memory clinic in France. While the concentration of memory clinics within countries also differs, this national variation indicates that different countries rely to different extents on memory clinics as a part of the clinical pathway for dementia.
In recent years, memory clinics in some countries expanded their services beyond diagnostic testing to include follow-up care and support for people living with dementia and even family members. However, the effectiveness – and particularly cost-effectiveness – of diagnosis and care through a memory clinic is not clear. A recent study of memory assessment services in the United Kingdom found that while the care provided through memory clinics was effective, it was not cost-effective (Gomes et al., 2017). A randomised control trial of follow-up care through memory clinics in the Netherlands found that care provided through memory clinics was no more effective than post-diagnostic support provided through general practitioners (Meeuwsen et al., 2012). Given the cost pressures faced by many health and social care systems, there is a need for better understanding under what conditions memory clinics can add best value to other dementia care services, and countries should also carefully consider the appropriateness of memory clinics in the clinical pathway, particularly for post-diagnostic support.
There is still a long way to go to improve the process of diagnosis. Specialist memory clinic services continue to play an important role in diagnosis, but their role should be better defined. Just five countries in the OECD (Denmark, France, the Netherlands, Switzerland and the United Kingdom) have developed or are developing definitions, guidelines and standards for memory clinics. This means that the care provided can differ significantly from one clinic to the next, even within the same region of a country.
1.2.4. Dementia remains difficult to identify and measure.
Dementia has been a policy priority for many countries in recent years. At least 22 OECD countries have developed national plans or strategies to improve their country’s dementia response, and many have launched policies aimed at improving management and care. However, data on dementia remains extremely limited, and can hamper efforts to identify people living with dementia. Without better identification of who has dementia, it remains challenging to improve quality of care and outcomes.
Improving data for dementia is recognised as a key policy in a number of national action and strategic plans, including in Ireland, Switzerland, the United Kingdom, and the United States. Other countries have made improving dementia research — not only clinical research, but also population health — a key component of their national plans, including Australia, Finland, and Mexico. Yet despite these signals, few countries have data systems that can generate the kind of information critical to developing evidence-based policies and measuring progress toward defined goals. Data challenges have further constrained the ability to engage in international comparisons in addition to hampering effective domestic policy development. Though most countries can estimate dementia prevalence, for example, very few have an accurate estimate of diagnosis rates in their country. Despite the policy focus on improving diagnosis, a recent OECD pilot data collection on dementia care indicators found that fewer than 40% of countries could estimate diagnosis rates on a national level (Figure 1.4). An accurate picture of the number of people living with, developing, and being diagnosed with dementia is critical in order to understand the effect of new policies.
Figure 1.4. Countries able to measure different aspects of dementia care
Source: OECD Dementia Care Quality Feasibility Study 2016.
Countries across the OECD have developed a range of processes to collect, store, share, link, protect and use health data. They are at very different stages when it comes to how advanced and widespread these data systems are. These different approaches can have real implications for how health services are delivered and diseases are managed and monitored. Where diagnoses are made in primary and secondary care, for example, data from just secondary care would provide an insufficient estimate of the rate of diagnosis and the number of people who receive health services for dementia. Connecting the information collected across health care settings can therefore give a better picture of the real state of health system quality. This is particularly important for dementia, where primary care plays a major role in diagnosis and care management. Yet less than half of countries reported that they could identify people with dementia from primary care records on a national level (Figure 1.5).
Figure 1.5. Countries that can identify people with dementia in administrative data
Source: OECD Dementia Care Quality Feasibility Study 2016.
A number of OECD countries have aimed to improve the data landscape by linking data from a number of national datasets. Slightly over half of countries surveyed for Health Data Governance: Privacy, Monitoring and Research reported that they regularly linked data from at least four large national datasets (OECD, 2015b). Countries frequently link data from hospital inpatient datasets, mortality data, cancer registries, prescriptions registries, and census databases. However, even with these data sources linked, important areas of the health system are frequently excluded from regular data linking. This is particularly problematic for monitoring the quality of care and outcomes for dementia. Many of the less frequently linked data sets come from areas of the health system, such as primary care, that come into frequent contact with people with dementia, and long-term care.
Given its important and growing role, primary care is a crucial data source to ensure that individual patients receive the best quality care they can. The role of primary care for dementia has increased in many OECD countries. Yet primary care data systems are often separated from broader health data systems, with very few countries linking primary care data to other sources of health data. Less than 10% of surveyed OECD countries reported regularly linking data from primary care with other health records to monitor quality and performance (OECD, 2015b). This can have serious implications for how health professionals respond to patients with dementia. For example, patients managed and diagnosed in primary care may not have their diagnosis communicated in case of a hospital admission, which may affect how they are treated during their stay. Moreover, primary care physicians may not have the incentive to fully record information related to the dementia diagnosis in their medical records. During the development of the dementia disease registry in Sweden, primary care physicians were initially given financial incentives to record assessments in the registry. Moreover, even where physicians may wish to record dementia, coding practices can be complex and they may lack the guidance or training to do so accurately. In the United Kingdom (England), a survey of coding practices among general practitioners in London found that a basic coding exercise that helped practitioners recode cases of dementia increased the number of people recorded to have a diagnosis of dementia by nearly 9% (Russell et al., 2013). Guidance documents developed by NHS England in London and the North Region aim to improve the accuracy of dementia coding in primary care.
A number of countries have adopted the registry model to monitor and improve outcomes for people living with dementia. The registry model has been used regularly to monitor other diseases, such as cancer, and can help to increase data transparency and contribute to better outcomes, often at a lower cost of care. In recent years, some countries have applied the disease registry model to dementia. While the depth and coverage differs between countries, the development of registries reflects an effort to improve data quality and transparency around dementia.
Six OECD countries –Denmark, France, Israel, Norway, Sweden and the United States – have developed dementia registries at either the national or regional level. In Sweden, for example, the Swedish Dementia Registry SveDem collects information from all memory clinics, nearly 80% of general practices, and long-term care settings. In addition to demographic and clinical indicators, information on non-pharmacological treatments, community-based support, quality of life, and other measures provides a more comprehensive picture of how someone with dementia is living with the disease. In addition to SveDem, Sweden has additionally developed a Behavioural and Psychological Symptoms of Dementia (BPSD) registry that aims to improve quality of care in nursing homes.
1.3. People with dementia struggle to live independently because initiatives to make communities safe, accessible and socially inclusive remain fragmented
1.3.1. Ageing at home reflects both the preferences of people with dementia and government priorities, but community-based care is not fit for purpose
OECD countries have begun to encourage ageing at home for as long as possible, and the number of beds in long-term care facilities has fallen across the OECD (Figure 1.6). This corresponds to the preferences of many older people, including those with dementia. Maintaining relationships and social connections are particularly important for people living with dementia, because loneliness and isolation can accelerate the progression of the disease. By living at home, people with dementia are better able to stay independent through the early stages of the condition and connected to their communities. Community-based interventions are often also more cost-effective for health systems, and can deliver a higher quality of life, at least until a certain level of disability.
Figure 1.6. Trends in long-term beds in institutions and hospitals, 2005‑15
Source: OECD Health Statistics 2017, http://dx.doi.org/10.1787/health-data-en.
Living at home with dementia can, however, pose unique challenges as the disease progresses and symptoms, such as wandering, increase. Once-familiar home environments can become difficult and even hazardous to navigate, and can contribute to accidents, such as falls. Assistive technologies, such as location tracking devices and automatic reminders, can help people with daily activities, though uptake is not always high. Moreover, community services and activities may be underprepared to accommodate people living with dementia.
1.3.2. Better care co-ordination is important for people with dementia, especially those with complex needs.
Many health and social care services have been developed to help slow cognitive decline and improve quality of life for people with dementia and their families. Cognitive stimulation therapy has been found in some cases to help improve memory as well as available medications (Knapp et al., 2006; Spector et al., 2003). Moreover, even services that do not improve memory can have positive impacts on the well-being of people with dementia and their families. Exercise therapies can help to improve functional ability, for example, while arts- and music-based therapies can help to reduce behavioural and emotional symptoms (Cowl & Gaugler, 2014). But navigating these services remains difficult. Many people do not know what services are available to them, or how to access them. Non-medical therapies are often delivered by non-governmental services, such as local Alzheimer’s Associations, that are outside of health and long-term care benefit packages. Waiting lists to access services can also be long. In Greece, for example, demand to attend day care centres far exceeds the approximately 5000 places available.
In this context, coordinated post-diagnostic support, for example through established care co-ordination pathways or case managers, can help people obtain the best support they can and access disparate services in a systematic manner. Post-diagnostic care pathways have been developed specifically for people living with dementia in at least nine countries. In Scotland, for example, the government mandated that all people diagnosed with dementia receive one year of post-diagnostic support, and created ‘dementia link workers’ to help people access what is available to them. In Norway, municipal memory teams provide both pre- and post-diagnostic support to people diagnosed with dementia. The memory teams are distinct from Norway’s more general care co-ordination, which is available to any individuals requiring services from more than one health or social care agency. Similar models of coordinated, dementia-specific care have been developed in other countries. Without dedicated support, post-diagnostic care may be left up to the diagnosing physicians, who may not see many cases of dementia and may not be familiar with the services that would be available to them.
People with complex cases of dementia in particular may benefit from targeted post-diagnostic support. Early onset dementia or minority cultural and language backgrounds also pose additional barriers to accessing services, which tend to be designed for a typical patient profile. Some countries have therefore developed case management programmes that are available to complex or rare cases. The Maisons pour l’Autonomie et l’Intégration des Maladies Alzheimer (MAIA) in France, for example, offers a single entry point to health and long-term care for very complex cases. In Estonia, people with early onset dementia are eligible for a separate system of support, provided through the National Insurance Board. Qualifying patients receive state care services, including individual case management services and personalised rehabilitation plans. While the programme is not limited to those with dementia (among others, people with schizophrenia and other psychiatric conditions are also eligible), special care services only support people with dementia under the age of 65, after which they must use the services available in their local municipality.
Special case management programmes for people with early onset dementia are similarly available in Australia, where the National Younger Onset Dementia Key Worker Program, funded by the Department of Social Services, provides case management support to people under the age of 65. People with symptoms of dementia who have not yet been diagnosed are also eligible for support through the Dementia Key Worker Program, where case managers can help people receive a formal diagnosis. In Norway, clinical care guidelines have developed a separate care pathway for people with early-onset dementia, complex cases, and cases that involve people from minority language and cultural backgrounds.
1.3.3. Strengthening community services would reduce health risks and social isolation and improve integration for people with dementia
While ageing at home often aligns with the wishes of older people, including those with dementia, people with dementia can often face challenges that make staying in the community particularly difficult. Communities are often inadequately prepared, including dealing with problems related to unintentional wandering, challenges with driving and using public transportation, lack of understanding from people in the community and the service industry, and exploitation, such as elder abuse and fraud. Developing interventions that can help reduce the risks that people with dementia may face in the community is important to enabling a high quality of life.
Dementia-friendly initiatives that reduce stigma and improve community response have been effective. Community members are well-placed to look out for possible dementia symptoms amongst their peers. In recent years, nearly all OECD countries have developed ‘dementia-friendly’ community initiatives that aim to improve awareness and reduce the stigma associated with the disease, thereby helping to build more inclusive societies. They increase general awareness, take into account the needs of people with dementia when planning and designing services, and improve the local business and general community response. Such initiatives have been well received by both dementia advocates and local communities. In the United Kingdom and Japan, training the public to become dementia friends has been extremely successful. More than two million ‘dementia friends’ have trained in England, while more than 9.5 million people have attended training sessions to become so-called ‘dementia supporters’ in Japan.
Another possibility to strengthen local services is by engaging local businesses and public services, as a way to improve the daily experience for the many people living at home with dementia. Some countries have developed programmes to improve the response of public services and local businesses to people living with dementia. A training programme in Austria that teaches police officers de-escalation approaches to help respond to people exhibiting behavioural and psychological symptoms of dementia (BPSD) has trained at least 2 000 police officers since it was started in 2013.
In another example, at least five OECD countries – Australia, Belgium (Flanders), Canada, the United Kingdom, the United States – have launched training programmes for local pharmacists. As trusted health professionals who are often in frequent contact with their older patients, pharmacists are well-placed to monitor behavioural changes and provide advice and signposting for people who need help. In Flanders, Belgium, for example, the Flemish Pharmacist Network has worked with the Flemish Dementia Expertise Centre to increase the role of pharmacists, together with primary care practitioners, in supporting people with dementia. The programme aims to train pharmacists throughout Flanders to ensure they have the necessary knowledge and information to both identify the first signs of dementia and provide information and support, including referrals on to further services, to people living with dementia and their family members. Programmes like these serve a double purpose. They can both improve the quality of services given to people with dementia, and improve understanding for dementia among people who may not have regular opportunities to learn about the disease. In doing so, they make living in the community both easier and more welcoming for people with dementia.
Health and social care professionals who are trained in dementia care and familiar with local services should be available in local communities, too. The services available to support people with dementia can vary substantially by community. People living with dementia and their families already face a range of challenges that make coordinating these services difficult.
At least four countries – Chile, Denmark, Finland and Norway – have developed new professional staff positions and resource centres that are focused on supporting people with dementia who live in the community. Community-based dementia staff positions have in some cases become the first point of contact for people with dementia or their carers, sometimes before a formal diagnosis has even been made. In Norway, for example, ‘memory teams’ operate in 75% of municipalities and provide both pre-diagnostic support and follow-up assistance to people with dementia and their families. In Chile, ‘community managers’ help to identify and follow-up with people who live with dementia in the community and provide a relatable source of support and information to them. In Denmark, most municipalities have dementia co-ordinators who perform similar functions, visiting people concerned about dementia symptoms prior to a diagnostic evaluation, and offering help in coordinating care after a diagnosis is made. A network of memory nurses across Finland, located in primary health care clinics, perform similar counselling and coordinating functions for people with dementia and their families, particularly those with advanced forms of the disease who live in the community. These positions can work together with or alongside existing care co-ordination and case management systems. Community-based guidance staff can help people not only navigate the logistics of their care, but also learn to live with dementia in the best way they can.
1.3.4. There is little standardised measurement of outcomes for people living with dementia
Despite the strong policy emphasis on improving community-based care for people living with dementia, measurement is lagging in most countries. Few countries regularly measure the proportion of people with dementia living in the community: Eight of 21 OECD countries can estimate the proportion of people with dementia living in the community, while 11 out of 21 OECD countries can identify those with a diagnosis who receive home-based long-term care services.
Clear outcome goals for dementia-friendly initiatives are often missing, or are focused on intermediate outcomes such as the number of dementia-friendly communities or volunteers trained. Given the focus of many dementia care policies on improving quality of life, countries should consider how to better capture person-centred indicators including self-reported quality of life measures for people with dementia and their carers. Quality of life measures offer a good opportunity to measure whether community-based initiatives, which usually focus on well-being more than clinical outcomes, are working. While most community-based interventions are focused on improving autonomy and quality of life, measurement of quality of life is notably lacking from regular data collection in almost all OECD countries. Two countries – Australia and Canada – are able to measure wellbeing or quality of life for people with dementia nationally and on a regular basis.
1.4. Informal carers are the most important source of support for many people with dementia, but not enough support is available to them.
1.4.1. Informal carers provide a majority of dementia care, but caring for a person with dementia is mentally and physically taxing
Family and friends play a critical role in caring for people with dementia. Dementia affects not just the people who receive a diagnosis, but can also be devastating for the families and loved ones around them. Family members and friends often provide care, either on top of or in place of the support offered through formal care systems. Informal care is estimated to represent 40% of the total cost of dementia worldwide. It can be substantially more where formal care services are less well established. As people live at home longer, and the burden of dementia rises, the need for family members and others to provide additional care will continue to rise.
Figure 1.7. Share of informal carers among population aged 50 and over, 2015 (or nearest year)
Note: United Kingdom refers to England. The definition of informal carers differs between surveys.
Source: OECD Health Statistics 2017, http://dx.doi.org/10.1787/health-data-en.
The difficult behavioural and psychological challenges that can arise from dementia, and the emotional strain of caring for someone with memory loss, can place a high burden on carers and lead to burn-out, depression, anxiety, and poor physical health. A longitudinal study using data from the United States found that women who provided intensive caregiving (36 hours or more per week) to a spouse were nearly six times more likely to be depressed or anxious (Cannuscio et al., 2002). Caregivers are much more likely to report a poorer quality of life than similar adults who do not care for family or friends (Thomas et al., 2015; Stansfeld et al., 2014; Pinquart & Sörensen, 2003). Notably, caregivers supporting people living with dementia are much more likely to experience poorer mental and physical health than non-carers and non-dementia caregivers (Stansfeld et al., 2014; Pinquart & Sörensen, 2003; Ory et al., 1999). High caregiver stress can also increase the chance that the person they care for will be put in a long-term care facility, and can increase the behavioural and psychological symptoms of dementia.
1.4.2. Most caregiver policies are not tailored to the needs of caring for people with dementia.
Countries recognise the important role that informal care plays to support people with long-term conditions, and have taken steps to ensure that caring for a loved one does not come at the expense of the carer’s own well-being. However, most carer support interventions have been designed for informal carers more broadly, and do not necessarily focus on carers of people with dementia, or reflect the unique needs of dementia carers. The length of time many informal carers will spend supporting a person with dementia, as well as the high stress of the role, means that caregivers of people with dementia may sometimes have unique needs that broad-based policies may not necessarily meet.
Employment policies should be supportive and flexible for caregivers in the workforce. For informal carers who are in the workforce, juggling the responsibilities of a job and caregiver can cause considerable stress, and impact how well a carer can perform their duties. Improving caregiver health is also important to the well-being of those they care for.
Caregiver burden is an important determinant of early institutionalization (D’Onofrio et al., 2014; Gallagher et al., 2011; Mittelman et al., 2006; Gaugler et al., 2009; Spillman and Long, 2009; Yaffe et al., 2002). Multiple studies suggest that higher caregiver stress increases the desire and likelihood to institutionalise care recipients with dementia. Beyond the broad category of “caregiver stress,” financial difficulty, physical stress, social support, family cohesion and caregiver knowledge about dementia have been associated with higher desire and risk of institutionalisation (Gallagher et al., 2011; Spitznagel et al., 2006; Spillman and Long, 2009). Caregiver burden is particularly high when people with dementia have high needs, including exhibiting the behavioural and psychological symptoms of dementia (BPSD) (Vaingankar et al., 2016).
Caregiver burden and health have also been associated with worse health outcomes for their recipients of care. Caregivers of people with dementia with higher levels of burden, caring intensity, depression, and lower educational attainment have been found to report higher levels of behavioural and psychiatric symptoms of dementia (BPSD) among care recipients (Sink et al., 2006). Higher caregiver burden has also been associated with a higher prevalence of falls among care recipients (Vaughon et al., 2018; Kuzuya et al., 2006).
Researchers have suggested promoting interventions that reduce these and other sources of caregiver stress as a means of delaying institutionalisation and improving health outcomes among people with dementia. As of 2017, 27 of the 35 OECD countries have workplace support policies in place that allow informal carers to take at least some time off to provide care. In 19 countries, at least some part of the time off is offered as paid leave, though this tends to be very short. However, the length of time many informal carers will spend supporting a person with dementia, as well as the high stress of doing so, means that these provisions are often insufficient.
1.4.3. Day care services and training should be strengthened and better signposted
Respite care, which offers carers the opportunity to take a short break away from caring, can help caregivers to make space to focus on their own needs. Day care services can allow carers to attend to other activities on a regular basis, while overnight respite care can help to facilitate longer-term breaks and allows caregivers to recharge from the daily stresses of their role. While further research is needed, day care respite services have been found likely to be cost-effective (Knapp, Iemmi and Romeo, 2013). Nearly all countries have some form of day care available, though uptake can depend on the quality and accessibility of local services. Programmes that can work around the needs of carers – for example, those that offer pick-up and drop-off services, or schedule day care hours to fit around the schedules of caregivers who work – can contribute to making day care services work for both the person with dementia and their carer. In Switzerland, for example, day care centres in Lucerne have begun offering full-service support around the day care activities. Staff members come to the person’s home to help them get ready for the day before driving them to and from day care. Overnight respite care is more dependent on local capacity constraints, and many people who could benefit from the service are not able to access it.
People who care for friends or family members with dementia will almost always benefit from training or skill-building support to help them in their new role. Training and support programmes are widely available for caregivers of people with dementia, and are most often delivered through the non-governmental sector, such as through local branches of the Alzheimer’s Association. In the United States, the Resources for Enhancing Alzheimer’s Caregiving Health (REACH) intervention was implemented across the Department of Veterans Affairs (Nichols et al., 2011, Nichols et al., 2017). Where services are not delivered through the health or social care sectors, it is important that health professionals are familiar with the services offered through non-governmental organisations. This will help to ensure that people receive the support they need, irrespective of how it is delivered.
Signposting carers to support should be made a standard part of the post-diagnostic care pathway. In addition to the general carer programmes available, many services for dementia carers are offered through non-governmental organisations and locally-based services. However, it may not be clear to the carer what services are available and what support is beneficial. Information about and referrals to available services for carers should be consistently integrated into post-diagnostic care. An example of effective co-ordination between the clinical setting and support services can be found in the United States, at the Healthy Aging Brain Centre in Indiana. Both people with dementia and their caregivers undergo a needs assessment, and staff members are trained to evaluate the level of burden on the caregiver and refer them to support services available in the community.
1.5. Care for people with advanced dementia lacks dignity and can result in worse health outcomes
1.5.1. Most residential homes are not designed to address the needs of people with dementia, while smaller scale housing shows promising results
Even with good community-based care, some people with dementia will eventually develop care needs that cannot necessarily be supported at home, and will require more intensive facility-based support. Long-term care facilities such as nursing homes must therefore be equipped to provide high-quality, person-centred support for people with dementia. A majority of nursing home residents have cognitive impairment and dementia, though many of them have not been diagnosed. Studies in Europe (Czech Republic, England, Finland, France, Germany, Israel, Italy, Netherlands, Sweden) indicate that close to 70% of nursing home residents have some form of cognitive impairment (Onder et al., 2012; Björk et al., 2016). Yet traditional models of long-term care living may not be suitable for people with dementia. The physical design of many residences, such as long hallways, locked wards, and hospital-like facilities can contribute to confusion and distress among residents, and nursing homes are frequently under-resourced and understaffed, which can contribute to care decisions that may not be in the best interest of the resident.
Small-scale units can promote social engagement and community interaction. In recent years, a number of innovative residential care models have emerged that reflect an alternative model of long-term care living. In the Netherlands, the dementia village model allows people with dementia to enjoy a level of autonomy inaccessible to most people living in care facilities, by developing an entire community of care centred around the needs of people with dementia.
New approaches to residential care share a similar emphasis on promoting smaller-scale housing that encourages community engagement and independence. Small-scale living communities, in which a small number of residents share a home and care support, can provide high-quality care and promote autonomy and a sense of community well into the advanced stages of dementia.
Multi-generational communities that accommodate both elderly populations, including those with dementia, and younger populations such as students have emerged as an approach to combat social isolation. This approach, which is in place in some care facilities in the Netherlands, United States, and Finland, offers free or reduced rent for students in exchange for spending time with older residents of the facility. In Germany, the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth has promoted the development of Mehrgenerationenhäuser, or “multi-generational housing,” in people of all ages, including families with small children, live together and create a community of support and exchange. As of 2017, about 550 Mehrgenerationenhäuser have been developed across the country. To promote the programme, subsidies of up to EUR 40 000 (co-financed by the federal government and local municipality) are available to develop multi-generational homes.
Dementia-friendly design should be considered for new construction and building adaptation. While attention to better long-term care for people with dementia has grown, the majority of those in long-term care facilities continue to reside in residences that do not necessarily reflect best practice. A number of countries, including Denmark, Ireland, Norway, and the United Kingdom, have put in place guidelines for dementia-friendly design that lay out principles to help develop or adapt buildings and homes with the needs of people with dementia in mind. These guidelines can help to ensure that residential facilities developed today reflect new models of dementia care. In Norway, for example, residential and nursing homes built with funding from the National Bank of Housing are now required to conform to dementia-friendly design principles.
1.5.2. The quality of long-term care for people with advanced dementia is often poor
Many people develop behavioural and psychological symptoms of dementia (BPSD) as the disease progresses. These symptoms, which can include aggression, agitation, and delusions, can be highly distressing to experience and respond to. A range of non-pharmaceutical approaches have been developed to respond to BPSD. With effective management of BPSD, people with dementia can be kept comfortable and safe, and the distress of these symptoms for caregivers can be reduced. However, it can be stressful to respond to challenging behaviours and restraints continue to be used to subdue people with BPSD.
Restraints, which can include both physical restraints and antipsychotic medications, can increase health risks, restrict autonomy and do not reflect a person-centred care approach focused on improving well-being for people living with dementia. There is widespread clinical agreement that antipsychotic medications should not be used to manage most difficult behaviour. Yet rates of antipsychotic prescribing vary by a factor of more than two across OECD countries, from 30 in every 1 000 people aged 65 and over in Sweden and the Netherlands to more than 70 in Belgium and Slovenia. Such a wide variation suggests that much more needs to be done to ensure a person-centred approach to dementia care.
Figure 1.8. Antipsychotic prescribing rates across OECD countries
1. Data for Norway do not include people in institutional care, so underestimate the use of antipsychotics. 2. Data for Spain refer to 2014.
Source: OECD Health Statistics 2017, http://dx.doi.org/10.1787/health-data-en.
Guidelines and training on BPSD management are crucial to reducing inappropriate care. BPSD can be hard to manage, and adequate training and guidelines are important to ensure caregivers respond effectively to difficult situations. Guidelines and regulations around the use of physical and medical restraints can influence how care workers and long-term care facilities respond to challenging behaviour. Financial incentives, such as requirements that long-term care facilities which receive public funding comply with directives, can help to influence behaviour. Training in restraint alternatives can increase compliance with guidelines and good practice. Staff members who have more training and work experience have a more positive outlook when confronted with difficult behaviours. In Norway, the ABC dementia training programme has helped to improve knowledge about dementia and job satisfaction. Over 19 000 basic care staff have completed the programme, with similar programmes implemented in Denmark and Sweden.
Staff who work in formal care systems – for example, care workers who are paid to work in nursing homes or as home health aides – must be adequately prepared to care for people with dementia, who often have more complex needs than other long-term care users. Even where family or friends are available to care for someone with dementia, people may need additional support from formal care services. People who live at home may still need occasional help with basic activities of daily living, while those in residential care rely even more on professional support. While most countries have basic training programmes for professional health and social care staff, often these do not adequately prepare them for the challenges of caring well for someone with dementia. For example, public training on dementia is not available for caregivers in Greece. While non-governmental organisations, including Alzheimer Hellas, have offered training programmes to care professionals, these programmes are not official and do not provide accreditation.
Dementia-specific approaches that take a person-centred approach to caring are important to ensure that people with dementia receive good care. The Dementia ABC educational programme developed in Norway represents an example of how well-designed training programmes can be effectively integrated into existing health and social services to deliver high-quality care and improve job satisfaction. Developed by the Norwegian National Advisory Unit on Ageing and Health, the Dementia ABC programme is a two-year, interdisciplinary training programme open to professional staff working with people with dementia, across disciplines and levels of seniority. To promote engagement with the Dementia ABC programme, the Norwegian government, through the Norwegian national dementia plan, has engaged in a cost-sharing scheme with local municipalities. The programme is not targeted at a specific group of professionals, but is designed to be relevant for all who may engage with people with dementia in their work lives. Staff members who completed the educational programme were found to have increased their practice of person-centred care and exhibited improvements in job satisfaction.
Professional incentives can help with training uptake. Dementia-specific training programmes that teach care staff to respond effectively and empathetically can help improve well-being for the recipient of care. It can also improve the caregiver’s experience. Some countries have incorporated dementia training into basic care, or developed training programmes that deliver additional expertise. For example, formal care workers are required to take additional dementia training to reach higher levels of qualification through the National Certificate in Health, Disability and Support in New Zealand. In some cases, dementia training is required to serve in certain care positions, such as dementia-aware home care workers in Belgium. Additional professional recognition and responsibility can help workers feel more engaged with and respected for the work they do.
Financial incentives can also encourage care workers to undertake additional training. In Norway, for example, home health aides and professional care staff who complete a vocational training course on dementia are eligible for higher salaries, while in New Zealand, the government has established minimum wage bands for care workers based on training and experience which are higher than the federal minimum wage. However, these examples remain the exception rather than the rule, and in most countries care staff is not professionally or financially rewarded for developing additional expertise in dementia care.
1.5.3. Inadequate hospital care for people with dementia can lead to worse outcomes for people with dementia
Many people with dementia will spend at least some time in an acute hospital, and it is important that hospitals are able to care for them in a way that minimises the stress of a hospital setting. But in most countries, it is far from clear that hospitals can accurately identify all or even most people with dementia who seek care. In a pilot analysis of hospital-based indicators collected by the OECD, many people who had previously received a dementia diagnosis did not have dementia recorded when they entered the hospital. This can affect not only the accuracy of hospital data, but also the quality of care the patient receives. Moreover, reducing hospital admissions is a worthy policy goal, but difficult to implement and evaluate when coding challenges remain so acute. A low admissions rate may indicate that a health system is indeed keeping people out of hospital, or it may conversely reflect a health system where diagnosis rates are poor, and many people do not receive the regular care they need.
Hospital coding standards that promote recording a dementia diagnosis should be improved. Coding standards that instruct health professionals on how to code diagnoses can impact how often diseases are recorded in hospital records. Many people with dementia may visit the hospital for a reason other than their dementia diagnosis. Where coding standards compel only conditions that need treatment during the current stay in hospital to be recorded, for example, dementia may not be recorded. This can happen even where a person has previously been diagnosed with dementia. Coding standards can significantly influence how specific diagnoses are recorded: in Australia, for example, the number of hospital admissions where dementia was recorded fell substantially following a change in coding standards in 2008. Even where dementia is not the primary reason for admission to hospital (as it rarely is), the condition can strongly impact the stay and can contribute to a worsening of health outcomes. For this reason, people with dementia would likely benefit from always having their diagnosis included in the hospital record, regardless of whether it is a reason for admission, or requires treatment at the time of admission.
Dementia is a progressive disease, and even when someone receives high-quality, person-centred care, there may still come a time when they need to seek acute care. A visit to the hospital can be a particularly distressing experience for someone with dementia, to the extent that many people leave the hospital doing less well than when they arrived (Sampson et al., 2009; Morrison and Siu, 2000; Nightingale et al., 2001). People with dementia may feel confused about where they are, and the sterile hospital setting and unfamiliar people can contribute to a heightened level of stress and agitation. People with dementia stay in hospital far longer than the overall average length of stay. Across the OECD, people with a diagnosis of dementia recorded in their hospital record stayed in hospital an average of 36 days, compared with just eight days for people who were not recorded to have dementia (OECD, 2017b). While people with dementia will sometimes need hospital care, the amount of time they stay in hospital should be reduced to the greatest extent possible. With adequate support, much of the care provided in hospitals can be provided at home. In the Netherlands, for example, a ‘hospital at home’ model of care admits people with dementia for only immediate treatment (such as surgery), while follow-up care is provided at home under the supervision of specialist nurses. Hospitals and health systems need to have strong connections with community-based and long-term care for such programmes to work well.
A major challenge of improving hospital care for people with dementia is that hospital staff may not recognise that a patient has dementia in the first place, as people are admitted to hospitals for other reasons than dementia – for example for a fracture following a fall. Even where someone has previously been diagnosed, a patient’s medical history is often not fully communicated to the hospital. Where hospital staff is not aware of a dementia diagnosis, they may not be able to treat the patient using the best possible approach. Training programmes to teach hospital staff, and particularly those working in emergency departments, to recognise possible signs of dementia could help improve hospital care for people who were previously undiagnosed, or whose diagnosis was not conveyed to the hospital because patient records were not linked. Moreover, dementia is rarely the main cause of a hospital admission: in 2016, 98% of hospital admissions where dementia was coded had dementia coded as a secondary diagnosis in Israel, while 89% of admissions with a coding of dementia had dementia recoded as a secondary diagnosis in Sweden. This makes it even more important that a diagnosis of dementia is made before coming to hospital, and that this diagnosis is shared once admitted.
Inpatient mental health teams can help to manage behavioural challenges. The stress of a visit to the hospital for people with dementia can aggravate difficult behaviours or lead to delirium. Some countries have taken steps to moderate these harmful effects through specialised in-hospital dementia liaisons. Response teams to manage challenging behaviours are available in hospitals in Australia, while specialist mental health liaison teams provide support and advice to hospital staff on how to manage difficult behaviours in the United Kingdom and Slovenia. Upskilling all hospital staff to effectively manage BPSD may not be feasible, given the range of conditions staff encounter on a regular basis. In many cases, creating a small number of specialist positions to support the broader staff may be a more realistic approach.
1.5.4. People with dementia have insufficient access to end of life planning and care
The gradual decline and loss of function that define the disease’s trajectory can make identifying the end of life stage of dementia particularly difficult. Without an ability to communicate their needs, people with dementia often reach the end stage of their life without access to the pain medication and palliative treatments that are more readily accessible to people with other diseases. In at least nine OECD countries, palliative care is unavailable or extremely difficult to access for people with dementia, even though it is more broadly available. Data on the availability of palliative care, particularly for people with dementia, is relatively poor. In Switzerland, a prospective study in the Swiss canton of Zurich is evaluating the end of life process for people with dementia, with a view to improving end of life care (Eicher et al., 2016).
Guidelines for palliative care should include dementia. Care staff may not be familiar with identifying the signs of end of life among people with dementia, or be unclear how palliative care should be administered when a patient is unable to communicate their preferences or needs. To date, no OECD country has developed a national framework for administering palliative care to people with dementia, though a number of countries, including the United Kingdom (England), Norway, and Switzerland, have identified people with dementia as a target group who need increased access.
By the end of their lives, people with dementia have often lost the ability to communicate with those around them, and are unable to understand the decisions that are made about them. This means that at the end of life, decisions may be taken about individuals’ care that do not reflect what they would have wanted had they been able to express their preferences. Unable to express themselves, people with dementia may suffer from avoidable pain or discomfort. Advance care planning tools allow people with dementia to communicate their preferences in guidance or legally-binding directives before memory loss has taken hold.
Uptake of advanced care planning tools among people with dementia remains very low. Even where advance care planning is explicitly part of dementia care guidelines, health professionals may find it difficult to bring up the topic of end of life so quickly after a diagnosis. People with dementia and their families also find it difficult to discuss the end of life.
1.6. Conclusion
Most health and social care systems in OECD countries have focused attention on improving the quality of care for people with dementia, including by developing national policies and strategies to address dementia. Yet gaps in access to and the quality of services remain. More than half of people living with dementia remain undiagnosed, and fewer than 40% of countries can estimate rates of diagnosis nationally.
Despite the growing attention on the impact of dementia in OECD countries, data for dementia remains very poor, and little measurement of outcomes likely hampers efforts to improve the quality of care. Some of these weaknesses are related to broader data system challenges that cannot be addressed for dementia alone. Nevertheless, countries should take steps to improve the quality of dementia coding across the health system. The development of dementia registries can be considered to improve measurement where data systems are not adequately linked.
Given the importance of a diagnosis in facilitating access to services for dementia, this report recommends that countries continue their efforts to improve access to timely diagnosis for people with dementia. Primary care plays a growing role in diagnosing and caring for people with dementia, and primary care physicians require adequate training and support to ensure they perform these tasks well. Yet physicians average just twelve hours of dementia training during medical school, and no country has mandated dementia training as part of continuing medical education. As a consequence, primary care doctors often misdiagnose dementia, correctly identifying only around 50-75% of dementia cases.
More attention must also be paid to strengthening post-diagnostic services. Services are often dispersed across health and social care, as well as public, non-profit and private sectors. At least six countries – Australia, Denmark, Estonia, France, the Netherlands, and Norway – have developed specialised care pathways for people with early or complex dementia. Care co-ordination pathways and case management services are important to helping people with dementia – particularly those living at home – connect with the services available to them.
As people live at home longer, communities need to be better equipped to meet the needs of people living with dementia. Post-diagnostic care pathways can help connect people with dementia and their families with available services. But communities themselves must also adapt: community-friendly initiatives that train local populations and businesses to respond more effectively to people with dementia can help to reduce stigma around dementia while making the environment safer and more welcoming. Aging at home also means that informal carers will play an important role in supporting people with dementia. Informal carers should receive the support they need, and governments should assess whether existing services for carers are also adequate for carers of people with dementia, who may have unique needs.
Even where strong community-based support is offered, people with dementia will still sometimes need support from long-term care services and hospitals, particularly as dementia progresses. High rates of antipsychotic prescribing – averaging nearly 5% of people over 65 – suggests that the quality of care for people with behavioural and psychological symptoms of dementia should be further improved. New models of long-term care offer promising alternatives to traditional care facilities, and can be considered as the evidence for them is further developed. Lastly, structural barriers, including reimbursement, can sometimes hinder access to end of life palliative care services for people with dementia. Access to palliative care at the end of life should be strengthened, with special attention given to the needs of people with dementia.
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