This chapter reviews how countries are enabling people with dementia to live in their communities independently. It assesses what countries are doing to improve co-ordination and access to care and services following a diagnosis, what they have done to make their communities more dementia-friendly, and how informal carers of people with dementia are supported in their role. 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 better developed and more regularly measured to further progress.
Care Needed
Improving the Lives of People with Dementia
OECD Health Policy Studies
Chapter 3. Helping people with dementia live well in the community
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.
3.1. Meeting the needs of people with dementia at home
In recent years, OECD countries have begun to encourage ageing at home for as long as possible. Many elderly people, including those with dementia, wish to remain in their communities for as long as possible. Because loneliness can accelerate the progression of dementia, it is particularly important that people with dementia avoid social isolation and maintain their relationships for as long as possible. Living at home allows people with dementia to stay independent and connected to their communities.
People with dementia have specific needs that must be met to age at home. Staying at home can 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. Even where such technologies are available, however, uptake is not always high. Moreover, community services and activities may be underprepared to accommodate people living with dementia.
Many countries have moved in recent years to support this preference and increasingly promote community care and delaying institutionalisation for as long as possible. Delaying onset into residential care and improving community living for people with dementia has been a major policy goal in many countries, and is mentioned in national strategies and plans in Australia, Ireland, Japan, Norway, Sweden, and the United Kingdom, among other OECD countries.
As community-based care is increasingly promoted, some countries with well-established long-term care services have reduced residential long-term care capacity. Between 2005 and 2015, Sweden reduced the number of long-term care beds in institutions by 23.5 beds per 1000 population over aged 65. These reductions can be attributed to a concerted effort to move long-term care out of residential facilities and into the community (Colombo et al., 2011). Other countries, including Australia, Japan, the Netherlands, Denmark, and Norway have also significantly reduced the number of beds per 1 000 people aged 65 and over available in long-term care (Figure 3.1).
Figure 3.1. 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.
Providing community-based care to people with dementia can be less efficient than institutional alternatives. Home care aides must travel to individual homes and can care for fewer people than in a residential home, while economies of scale available in institutional care settings are not realised when care is delivered in the community. Informal carers must also provide more hours of care than they would for people in nursing homes. However, community-based care can be substantially cheaper for governments. Cost-saving for public budgets can be realised through reductions in expenditure on board and care in institutions, while the cost of informal care is nearly always excluded from estimates of the cost of care, despite its important contribution.
3.1.1. Services for people diagnosed with dementia
Medications remain the most widely available treatment option and can slow the progress of dementia
While there is no cure for dementia, a number of available medications have been found to have mild effects on cognition for people with certain dementia sub-types and are frequently initiated following a diagnosis. These include memantine, which is applicable for people with Alzheimer’s dementia, dementia with Lewy bodies, and Parkinson’s disease, and anti-cholinesterase inhibitors, including donepezil, reivastigmine, and galantamine. Both memantine and anti-cholinesterase inhibitors have been found by meta-analyses to have small but beneficial effects on cognition (Livingston et al., 2017). Memantine has been suggested to have a small effect on cognition for people with moderate to severe Alzheimer’s disease, while anti-cholinesterase inhibitors have been found to be beneficial for people with Parkinson’s with dementia and possibly for dementia with Lewy bodies (McShane et al., 2006; Rolinski et al., 2012). The differing performance of memantine and anti-cholinesterase inhibitors points to the importance of conducting a full diagnostic evaluation and identifying the dementia sub-type wherever possible.
Anti-dementia medications are largely reimbursed across OECD countries. All European OECD members except Latvia at least partially reimburse either donepezil, rivastigmine, or galantamine (Alzheimer Europe, 2017). Generic versions of all anti-dementia medications are available. Some countries do not reimburse memantine, though in these cases at least one anti-cholinesterase inhibitor is available (Alzheimer’s Europe, 2017). Despite an increasing focus on delivering care through general practitioners, most countries continue to require a specialist diagnosis for a prescription to be initiated. Considering that anti-dementia medications work differently based on dementia sub-type, and that most full diagnostic evaluations are conducted at the specialist level, this restriction may be effective in avoiding inappropriate medicines prescribing.
At the same time, a perceived lack of treatment options is a major barrier to encouraging primary care physicians to diagnose dementia, or to refer patients for further evaluation, suggesting that expanding prescribing rights to primary care physicians could be one approach to increasing assessment, diagnosis and care at the primary level. In a limited number of countries, primary care physicians and sometimes even non-physician health professionals are also allowed to prescribe anti-dementia medications. General practitioners are able to prescribe these medications in Sweden and Denmark, while in the Netherlands, nurses are also allowed to prescribe medications for people with dementia.
Data from countries with dementia registries suggests that a high proportion of people who have received a dementia diagnosis are prescribed at least one anti-dementia medication. In both Sweden and Denmark, more than 80% of patients with Alzheimer’s disease, dementia with Lewy bodies, and Parkinson’s disease with dementia are treated with medications, with 83% of patients in Sweden and 86% of patients in Denmark receiving anti-dementia drugs (Fereshtehnejad et al., 2014). Though treatment levels are very high, at least one country is reconsidering its support for these medications. France recently launched an inquiry into anti-dementia medications and is evaluating whether or not to continue reimbursing them for people with dementia, citing possible insufficient effectiveness.
A range of non-pharmacological treatments are available in OECD countries
In addition to limited medications available to treat dementia, a number of non-pharmacological interventions have been developed. While pharmacological treatments have focused on improving cognition or delaying further deterioration, most non-pharmacological interventions focus on improving the quality of life for persons living with dementia or their carers. Non-pharmacological interventions proposed for dementia include multi-sensory stimulation, art, music and dance therapies, animal therapy, exercise therapy, reminiscence therapy, massage, and cognitive stimulation therapy. The evidence to support non-pharmacological interventions in improving memory or delaying cognitive deterioration is weak (Kane et al., 2017).
Cognitive stimulation therapy aims to improve cognition through engaging in cognitive activities, including reminiscence therapy and multi-sensory stimulation (Aguirre et al., 2013). A structured programme of CST has been developed and tested in randomized control trials, comprising seven weeks of twice-weekly group sessions for people with early to mild dementia. A Cochrane review of 15 randomised control trials evaluating cognitive stimulation found that the effect of CST on cognition may be equivalent to or better than the impact of anti-cholinesterase inhibitors (Woods et al., 2012). The longer-term effects of cognitive stimulation therapy are less well understood, though there is evidence that engaging in a weekly ‘maintenance’ session following the initial seven weeks sustained the benefits of the initial CST programme for at least a limited time (Orrell et al., 2005). Maintenance cognitive stimulation therapy has been found to be particularly effective, and also cost-effective, when combined with anti-cholinesterase inhibitors (D’Amico et al., 2015). Cognitive stimulation therapy (CST) is the only non-pharmacological intervention that has been recommended by the UK’s National Institute for Health and Care Excellence (NICE) for dementia care and has been found to be cost effective in treating people with dementia (National Collaborating Centre for Mental Health, 2016). It is offered widely in the UK, where about one-third of community mental health services offer group CST, and is available in at least some locations in other OECD countries, including Australia, Canada, Chile, Germany, Israel, Italy, Japan, the Netherlands, New Zealand, Portugal, Korea, and the United States (International Cognitive Stimulation Therapy Centre, UCL, 2017, Orrell et al., 2012).
There is substantial evidence indicating that exercise has a protective role in reducing the risk of developing dementia (Larson et al., 2006; Andel et al., 2008). A number of studies further suggest that exercise may also have a protective factor in cognition, even after the onset of mild cognitive impairment (Lautenschlager et al., 2008). While a Cochrane review of exercise studies found that there was no evidence to indicate that exercise interventions affects cognition or neuropsychiatric symptoms of dementia, there is some evidence to suggest that exercise interventions above a certain level of intensity may help to attenuate cognitive decline in at least mild Alzheimer’s disease, suggesting that meta-analyses examining multiple interventions may find no effect because of the differing intensities of different interventions (Forbes et al., 2015; Hoffman et al., 2016). Exercise interventions have further been found to improve performance of activities of daily living (ADL) in people with dementia (Forbes et al., 2015, Öhman et al., 2016). While the overall evidence supporting exercise interventions on cognitive decline is mixed, its overall benefits to health and impacts on activities of daily living, and the relatively low threshold to engage in at least low-intensity exercise activities, indicate that exercise programmes for people living with dementia should be encouraged.
Exercise-related activities are offered in many countries, often through community-based day care and other activity centres. Chile’s Kintun day care centre model promotes engaging in physical activity, including playing soccer with local youth. In New Zealand, Alzheimer’s Auckland runs a weekly gym group for local community-dwelling people living with dementia (New Zealand Framework for Dementia Care, 2013). Similar community-based exercise initiatives are widely available to people living with dementia in Australia, including targeted exercise activities offered through a community Dementia Gym and exercise activities designed specifically for people with early onset dementia (Alzheimer’s Australia, 2014).
Although most non-pharmacological treatments do not appear to alter the progress of dementia, they can play an important role in improving quality of life
Even where non-pharmacological interventions do not show an effect on cognition, they should be considered for the impact they can have on quality of life. So long as no cure for dementia exists, policies for people with dementia and their families and carers should equally consider how different programmes can affect their quality of life. This expanded conception of care beyond the clinical can challenge both health and social systems, where limited resources necessitate decision-making based on clinical outcomes and cost effectiveness. The range of quality of life measures developed for dementia, and recent emphasis on better incorporating patient- and carer-reported measures, is an encouraging step.
A range of alternative non-pharmacological interventions are regularly offered to people living with dementia, including arts- and music-based interventions. These interventions do not appear to have significant effects on cognitive decline, and the quality of current evidence is poor. However, arts-based therapies have been demonstrated to reduce depression and agitation among people living with dementia and improve their overall quality of life, as reported using carer- and patient-reported measures. Music, dance, and art therapies are regularly made available through community day centres, Alzheimer’s Associations, and local organisations. In Japan, art therapy and music programmes are made available to people living with dementia who attend community day care centres covered by care insurance (Suzuki et al., 2004). In the United States, the Alzheimer’s Association has developed a fine arts programme, Memories in the Making, intended to improve quality of life among people with early or moderate dementia through encouraging self-expression through art. Originally started in Cincinnati, Ohio, the programme has since spread to chapters of the Alzheimer’s Association throughout the United States. Because such programmes are largely organised by non-profit organisations and are not part of official care pathways for dementia, information related to their coverage and reach is in most cases limited.
The evidence base supporting most non-pharmacological treatments has largely comprised of short-term evaluations focused on different aspects related to quality of life or reductions in depression and agitation. The different methods of evaluating quality of life has made comparing the findings between studies difficult and points to the importance of developing strong measures of patient-reported measures that can be used across research settings. There is much more limited evidence related to the effects of non-pharmacological interventions on cognition, though some evidence to suggest that cognitive and exercise interventions may have a limited impact on cognition.
As discussed above, a range of non-pharmacological treatments have been found to improve quality of life measures for people living with dementia or their carers, even in the absence of cognitive improvement. These programmes, including exercise therapies, arts-based therapies, and other social group activities, should be made available to people with dementia wherever possible, either through government-funded day centres or non-profit institutions. At the very least, such activities promote social contact and can help to prevent isolation and loneliness in people with dementia.
Measuring treatment is complicated by data constraints
Despite the availability of treatment options that can improve cognition and function in people with dementia, many countries do not have a good picture of how many people receive these services. 11 of 21 OECD countries reported that they could monitor the utilisation of health and social care services for people with dementia at a national level, with a further two (Ireland and Switzerland) reporting that it was possible for at least some regions. Where medications are reimbursed, countries can often record whether a person diagnosed with dementia has received anti-dementia drugs. Systems to track medications consumption are available in many countries, including Canada, Denmark, Finland (through the Social Security Institute), France, Ireland, Israel, Norway, Sweden, and the United Kingdom. However, without comprehensive data about the total number of people diagnosed with dementia, monitoring the proportion of people diagnosed with dementia who receive medications is more complex. Countries with comprehensive dementia registries (such as Denmark and Sweden) or those that have more linked health data systems (such as the United Kingdom) can use their data on diagnoses and medications consumption to monitor access to medicines among people with dementia.
3.2. Ensuring adequate access to care after diagnosis
3.2.1. Care co-ordination can help people to access the services they need after a diagnosis
Despite increasing focus on strengthening post-diagnostic support, in most countries, care following diagnosis remains highly fragmented and largely ad-hoc for people with dementia. Though many health and social care services exist that can help people with dementia and their families living in the community, navigating these services can be difficult. People may not know what services are available, or how to access them. Coordinated post-diagnostic support, such as care co-ordination pathways or case management, can help people take advantage of the best support possible.
The organisation of services available to people with dementia and their carers is structured differently between and often within countries. In some cases, a formal diagnosis of dementia is an important eligibility criteria for accessing additional health and social services. How these care services are organised in the health and social systems can broadly be defined as care co-ordination. Sometimes, people with dementia are connected with an individual or group of individuals to help them navigate and access available care services. These more personalised services –which are sometimes a formalised care pathway, and sometimes more ad-hoc – can be considered types of case management.
Most OECD countries have recognised that even where diagnostic pathways are relatively strong, there is substantial room for improvement in strengthening post-diagnostic support for people with dementia and their families. Strengthening access to care and support following a dementia diagnosis is a key policy goal in many national plans. In Australia, improving access to post-diagnostic support and ongoing care and support are priority actions of the 2015-2019 National Framework for Action on Dementia, while in Austria, developing “consistent framework conditions for coordinated care” is one of seven key goals of the 2015 Dementia Strategy. Implementing a chain of care that encourages co-ordination is similarly a goal of in Switzerland’s federal strategy, while implementing a system of continuing coordinated care is one of nine objectives articulated in Chile’s national plan for dementia.
Despite widespread recognition of the need to improve care co-ordination following diagnosis and more generally along the care pathway, what constitutes care co-ordination, and how it is practiced, differs widely within the OECD. Care co-ordination programmes in OECD countries can be broadly defined in four categories. Where countries lack formalised care co-ordination structures for patients with dementia or other conditions, care co-ordination available is done on a more ad-hoc basis. A number of countries have developed care co-ordination or case management pathways that are implemented in health and social care systems for all people with an eligible condition, and are not limited to or tailored towards people living with dementia. Others offer care co-ordination opportunities that are tailored specifically for dementia. Lastly, some countries offer dementia-specific care co-ordination and case management programmes that are limited to a specific subset of the broader dementia population, with eligibility often determined by the severity or complexity of the case.
Local and ad-hoc initiatives make up for co-ordination services where none are available
A large number of OECD countries, particularly in Eastern Europe and Latin America, report having no care co-ordination services organised for people with dementia to help them navigate social and health services following a diagnosis of dementia. Though strengthening co-ordination of care and case management is a major goal of Chile’s dementia strategy, there is currently little support for people with dementia living in the community. In the absence of case management, the state is developing the role of a ‘community manager’ to make home visits to people with dementia. While the community manager supports people with dementia directly through home visits, they will also engage in case finding and act as an advocate for people with dementia in the community, raising awareness and understanding for the condition.
In a number of countries where neither care co-ordination nor case management is institutionalised, primary care clinics and physicians sometimes provide support to their patients. In Mexico, a limited number of primary care clinics offer some case management to their patients. Similarly, in Hungary and Slovenia people with dementia do not receive care co-ordination in a formalised way, though some experienced general practitioners will connect their patients with relevant services through their network of colleagues in the local area. In Switzerland, general practitioners and memory clinics sometimes organise roundtables, inviting the person with dementia, their family, physicians, and sometimes a social worker to discuss the diagnosis and next steps. Overall, however, co-ordination is seen to be very weak in Switzerland, with no organised care co-ordination available for people with dementia. A 2017 report commissioned by the federal government to review the state of care co-ordination for people with dementia found that just 10% of experts believed that care co-ordination and providing people with dementia with necessary information works well today (Bundesamtes für Gesundheit, 2017). The government recently published recommendations for strengthening care co-ordination, a major goal of Switzerland’s federal dementia strategy (Bundesamtes für Gesundheit, 2017).
Case management services are sometimes integrated into memory clinics and other dementia specialist care. In England, case management is generally available for anyone seen in a memory clinic. Case managers are typically allocated based on the severity of the condition and complexity of needs, and often receive specialist training for the position.
In some systems where no institutionalised care co-ordination has been developed, local initiatives have developed support programmes creating local care pathways for people with dementia. With funding from a private foundation, County Tipperary in Ireland has developed a ‘Five Steps to Living Well with Dementia’ programme that provides support for people with dementia from the pre-diagnosis to end of life stages, including offering help from Dementia Support Workers and ‘community connectors’ who can help people with dementia connect with resources and services in the area. Outside of County Tipperary, there are four case managers across Ireland – three operating in the public system, including one supporting elderly patients more generally, and one employed by the Alzheimer’s Association. Where case management services are unavailable, primary care physicians often refer people with dementia to public health nurses, who can undertake a care needs assessment, or the Alzheimer’s Society of Ireland, for further support.
Online resources are also frequently available for people with dementia and their families to consult. PREPARE, a project to train primary care physicians in dementia management driven by a primary care practitioner in County Cork, Ireland, has developed a website with information on organisations providing support to people with dementia in the country. Alzheimer’s Associations are active on a local level in nearly all OECD countries, and frequently have websites that direct people with dementia to locally available resources. Nevertheless, online resources are unlikely to replace support from individuals familiar with the complexities of accessing and qualifying for health and social care services. The advanced age of many people with dementia (and often their carers) may further hinder their access to web-based resources.
Many countries have developed generalised care co-ordination services that serve people with many conditions, including dementia
Across the OECD, a number of countries have facilitated access to care co-ordination and case management through established, generalised pathways of care that were not developed specifically for dementia. In many of these cases, the systems have been developed with enough flexibility to meet the needs of people with dementia. In Norway, municipalities are responsible for care co-ordination and are required to have a coordinating unit available to provide co-ordination services to all residents who require services from more than one agency. Coordinating units offer general co-ordination services and are neither dementia specific nor trained to care for people with dementia. However, municipalities are given flexibility in identifying the most appropriate co-ordinators for each case. Municipality-led dementia memory teams can complement this general care co-ordination and provide pre- and post-diagnostic support for people with dementia. The coordinator identified by the coordinating unit often comes from the memory team, facilitating both continuity in support and allowing for the person with dementia to receive co-ordination services offered by someone familiar with dementia and the resources available to support living with it.
Generalised case management services also operate in Sweden, where all residents have the right to a case manager when needed. Case management is not dementia specific, and many case managers are not trained in dementia care specifically, though training programmes are increasingly available. In Estonia, case management is the responsibility of the municipality, with social workers supporting case management across conditions and diseases, based on need. In Austria, each of the nine Bundesländer has one care organisation responsible for providing case management and care services.
While these case management services can connect people with dementia across the health and social care services they need, most case management programmes are only accessible to people who have met certain thresholds of eligibility. In New Zealand and Canada, for example, level of need is measured using the interRAI assessment system, while in Austria, people in need of care services are assigned to one of seven levels of care support. Though the rationale for a needs-based case management system is clear, in cases where post-diagnostic services are otherwise poorly coordinated, such general case management systems run the risk of excluding some people with dementia who may not yet be in need of home care services, but who should still be connected with the resources available to support them in understanding their diagnosis and the life changes that come with it. In Austria, the need for post-diagnostic support above and beyond existing case management systems has been recognised, with pilot projects underway in Vienna and the region of Tyrol to provide case management services to people with dementia who live at home.
Table 3.1. Availability of care co-ordination services in selected OECD countries
Source: OECD Dementia Survey and Interviews 2016-2017.
In some health systems, post-diagnostic care pathways have been designed specifically for people with dementia
Formalised, dementia-specific care pathways including case management components have in some cases been developed to help people navigate health and social care following a dementia diagnosis. Using existing case management pathways can in many cases allows people living with dementia to be connected with case managers and other professionals who are intimately familiar with the array of health and social care services available in the area. But for people with dementia whose needs may not yet meet the care thresholds required to access existing case management support, the information they receive following diagnosis may be determined more by what their clinician is familiar with than what might actually be available. For these cases, dementia-specific care pathways can help people to get the services they need. In Denmark, each of the five administrative regions is responsible for developing care pathways for people living with dementia. In the Capital region of Denmark, hospitals, primary care clinics, memory clinics, and municipalities – which are responsible for rehabilitation, preventive services, social care, and home care – work together to coordinate responsibilities with relation to people with dementia. In most cases of dementia, a nurse employed by the municipality is responsible for organising home care services, while the patient’s general practitioner will act as their medical coordinator and be responsible for all health-related services. General practitioners are required to follow up with their patients with dementia at least once per year. For the annual dementia visits, general practitioners receive an additional fee of about EUR 100. For complex cases, home care is managed by a specialised nurse coordinator at a memory clinic, while a specialist from the same memory clinic is responsible for clinical co-ordination.
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. Norway’s national guidelines recommend all people with dementia receive support from a coordinator, even before they qualify for existing co-ordination services. Often the first point of contact where someone is concerned about possible cognitive troubles, memory teams also follow up in the aftermath of a dementia diagnosis. It is recommended that people with dementia are reassessed by memory teams after six months, including whether they need services such as day care placement or support for caregiving relatives.
A similar model of care is available in Scotland and some parts of Australia, where the position of a ‘dementia link worker’ has been established to help people with dementia and their families access the support services they need. The government of Scotland requires that all people diagnosed with dementia as of April 2013 receive a minimum of one year of post-diagnostic support (Alzheimer’s Scotland, 2017). Achievement of this target is monitored through the inclusion indicators monitoring new dementia diagnoses and linkage to support workers through the Local Delivery Plan NHS performance standards (NHS National Services Scotland, 2017).
Offering both dementia-specific and more general support is similarly the model in Japan, where case management is an integral part of national goals to support elderly citizens to age in the community, through the Integrated Community Care System (Ministry of Health, Labour and Welfare, 2017). The country’s ‘Orange Plan’ dementia strategy further calls for the development of dementia care pathways to be implemented at the municipal level throughout Japan. In addition to services offered through integrated community support centres. Japan recently developed integrated care teams for early dementia. Teams are located in integrated community support centres, but also offer home visits, assessments, and support to family members of people with early onset dementia.
In the United States, a number of locally-based case management programmes have been demonstrated to improve health outcomes and reduce costs in dementia care. In Los Angeles, California, the University of California at Los Angeles (UCLA) has developed an Alzheimer’s and Dementia Care programme, in which all patients receive support from a geriatric nurse practitioner assigned to act as their case manager. The programme is aimed at improving care and health outcomes while reducing healthcare costs and use of healthcare services. It aims to do so by targeting three perceived gaps in care: 1) improving support and training for caregivers; 2) improving transitions in care settings; and 3) improving access to community-based services (Tan, Jennings and Reuben, 2014, Reuben et al., 2013). Similar case management programmes have been adopted by hospital systems in other parts of the United States, including San Diego, California, and Indiana (Reuben et al., 2013).
Case management can help to identify and coordinate needed services for people with dementia
Reviews of case management programmes for people with dementia suggest that in at least some cases, case management can improve quality of life for people with dementia and their carers, help delay transitions to care, and increase service utilisation (Vickrey et al., 2006, Parker et al., 2008). However, existing evidence suggests that case management does not necessarily deliver these benefits under all circumstances. While further evidence around the impact of case management on people living with dementia is needed, a number of general conclusions that impact the way co-ordination is delivered can be drawn.
Many countries have established formalised case management programmes open to people with dementia and other conditions. These programmes are most often based on a minimum level of assessed need, or open to people who require services from two or more separate agencies. In many cases, people newly diagnosed with dementia may not yet meet the criteria necessary to receive case management services. It has been suggested that earlier case management interventions may lead to greater satisfaction with the service among informal carers (Peeters et al., 2016). Given the importance of ensuring caregiver quality of life and support in caring, better satisfaction with case management services could possibly translate into lower burden among carers and better outcomes for people with dementia.
However, other studies comparing case management to regular post-diagnostic care among people with early stages of dementia have found no difference in effect on quality of life, caregiver burden, or depressive symptoms among people living with dementia or their carers (Jansen et al., 2011). It is possible that the length of follow-up in most studies may not adequately capture the longer-term effects of earlier interventions. Studies with longer follow-up times appear to more strongly demonstrate a delayed effect on institutionalisation from case management (Koch et al., 2012). Implementing case management interventions at earlier stages of dementia may also be more effective in settings where ‘normal’ care is less comprehensive and people with dementia and their carers receive less information from their primary care physicians on accessing relevant health and social care services.
There is substantial evidence to suggest that intensive models of case management may deliver higher-quality case management for people with dementia and their family carers. Intensive care management, in which the case manager and care agencies operate within one network, have been suggested to improve quality of life to a greater degree than linked care models, where case managers connect people with dementia to multiple competing agencies (van Mierlo et al., 2014; Vroomen et al., 2015).
A randomised control trial of different models of case management in the Netherlands suggests that intensive care co-ordination is likely needed for case management to be successful, but that the higher costs associated with intensive co-ordination may detract from any cost effectiveness delivered by the intervention (van Mierlo et al., 2004; Vroomen et al., 2012; Khanassov, Vedel and Pluye, 2014).
Targeted care co-ordination or case management for people with complex needs can be effective
Very often, people living with dementia also have one or more co-morbidities that make supporting their long-term health and care needs much more complex. In these cases, people may require services from an array of health and social care organisations, and the level or intensity of support may change over time. Navigating through the organisational complexity of accessing care and support from different points in the health and social system can be overwhelming, even without the cognitive problems people with dementia face. People facing early onset dementia or those from minority cultural or language backgrounds can also face additional difficulties accessing relevant services, particularly where they are designed for more ‘typical’ patients. In these cases, offering personalised support to people living with dementia, and their families, can help ensure that they receive the services they need.
In France, the Maisons pour l’Autonomie et l’Intégration des Malades Alzheimer (MAIA) provide a single point of entry to health and long-term care services for people with very complex cases of dementia. MAIA is a form of integrated care management that helps people with high needs access the services they need across health and social care settings. While the definition of “complex” cases differs by MAIA, most people will have behavioural needs or major health issues and face difficulty receiving care from informal carers or other existing caregivers. The programme helps to facilitate co-ordination between stakeholders providing health, social and administrative services related to dementia care, including health insurance, health services, retirement insurance, and social security through strategic consultation and the appointment of a “local pilot” tasked with coordinating relevant stakeholders (Pimouguet, 2013). Relevant services are then made available to people with dementia through an integrated service window that provides one entry point to accessing a range of services including health care-related needs and access to hospitals, hospital at home services, housing services, and mobile geriatric care services. People with dementia then receive personalised case management, including individual care plans, to ensure that their needs are met. Based on the PRISMA model of care co-ordination in Quebec, Canada, MAIA were developed as part of the 2008-2012 French National Alzheimer Plan (Pimouguet, 2013). More than 350 MAIA had been developed throughout France by the end of 2016. Not all people with dementia qualify for case management and support through MAIA. More recently, the MAIA model was expanded to include others with complex needs who do not have dementia.
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, in the event of which case managers can help people to obtain a formal diagnosis.
Improving the co-ordination of care is critical to ensure people with dementia have timely access to the services they need. OECD countries have adopted a range of approaches to improving care co-ordination, and should continue to focus on improving post-diagnostic care and support for people with dementia. Countries that have not developed care co-ordination or case management pathways for people with dementia should consider whether such programmes would help to improve service co-ordination, particularly for people with complex needs.
Some countries have created community-based dementia staff positions to help people with dementia and their families better navigate life in the community
As ageing in the community becomes more common, communities have begun to develop new professional staff positions and resource centres focused on supporting people with dementia who live in the community. These positions are sometimes located in existing health or social services, and frequently focus their support exclusively on people with dementia or other cognitive difficulties. They can provide services similar to case managers or care co-ordinators, and are often the first point of contact for people with dementia or their carers, even before a formal diagnosis has been made.
Community-based memory “teams” or dementia coordinator positions can help people with dementia and their families to prepare for a possible dementia diagnosis, understand and process its implications, and connect them with available resources. In Norway, so-called ‘memory teams’ operate in 75% of municipalities across the country. Made up of health professionals, occupational therapists, and other health and social staff trained in dementia care, memory teams can be contacted by people with dementia or their families even before a diagnosis has been made and are equipped to perform comprehensive initial diagnostic assessments, including during home visits. Memory teams further provide follow-up support after a diagnosis for at least six months. Members of the memory team are often appointed the official care coordinator for people living with dementia, allowing for further continuity in care. 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 healthcare 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.
Chile has adopted a community-based approach to dementia care with the development of a new “community manager” role. Based on the recognition that the gap between dementia prevalence and diagnosis is very high in Chile, the government has introduced this position to help identify, on the very local level, people who may have dementia who have not yet accessed the health system and received a diagnostic evaluation. Community managers use their knowledge of the local community to perform an active case-finding role. Community managers also follow up with people who are known to have dementia and live in the community, performing home visits and other follow-up to ensure they receive the care they need. Unlike memory teams and dementia co-ordinators, who are trained in dementia care and often come from the health or social care sectors, community managers are not expected to be health or care professionals, but are instead often themselves older, sometimes retired adults who are re-employed for their new position. This approach offers an interesting model in integrating dementia care at the very local community level. The older age profile of community managers, and their semi-professional background, may also be advantageous connecting with people socially, and in reassuring those who might be less comfortable receiving visits or care from formal health and social services.
3.3. Making communities work for people with dementia
3.3.1. Dementia-friendly communities can improve quality of life in the community for people with dementia
Even as countries have increasingly focused on encouraging community-based living for older populations, people with dementia frequently face challenges that make staying in the community particularly difficult. These include problems related to unintentional wandering, challenges with driving and using public transportation, difficulties in the home environment, a lack of understanding from people in the community, including in the service industry, and exploitation, such as elder abuse and fraud. Designing interventions that can help to reduce the risks people with dementia living in the community face is critical to allowing people to age in place while maintaining a high quality of life. These policies address not only the broader community, but must also target the quality of life of informal carers.
Box 3.1. Care in the community
People living with dementia can live for a long period or even their entire life at home, if they receive adequate support and long-term care. Long-term care can be delivered through formal services, but also through family members or friends (Colombo, F. et al., 2011). People with dementia can receive long-term care both at home or in long-term care facilities. In this report, we refer to community-based care as services and support that is offered to people with dementia that enables them to live at home, whether or not they receive (formal or informal) long-term care services.
Over the past decade, interventions focused on promoting dementia-friendliness have been increasingly adopted in countries around the world to allow people living with dementia to feel included and supported in their communities (Heward et al., 2017). The concept of dementia-friendly communities initially emerged in Japan, where serious efforts have been undertaken to destigmatise dementia and sensitise communities to be more accepting and inclusive of people living with the disease (Aihara et al., 2016). Dementia-friendly communities aim to help people living with dementia to stay in their communities longer. But beyond more pragmatic goals of making communities easier to live in for people with dementia, they also aim to promote acceptance of people with dementia as active and important members of their communities, reduce stigma and improve understanding of dementia.
Programmes that tackle behaviours like wandering can make communities easier to navigate for people living with dementia
Some OECD communities have developed programmes that address specific behaviours or characteristics exhibited by people with dementia which can put them at risk. Wandering behaviour, for example, is linked with higher risk of injury – including an increased risk of falls – and higher carer stress (Douglas et al., 2011; Logsdon et al., 1998). Wandering is a major concern for individuals living with dementia in community settings; a substantial proportion of people with dementia living in the community exhibit wandering behaviour, with some estimates suggesting that as many as four in five people with dementia in the community wander at some point (Klein et al., 1999; Hope et al., 1994; Hope et al., 2001). In Japan, the SOS Wanderers Network was established as a neighbourhood watch-style network to engage the community to search for people with dementia who may have wandered away and are missing (Hayashi, 2016). Local police alert members of the wanderer’s network – consisting of community residents, local business, and local media – when a person with dementia goes missing. In 2014, over 10 000 people were reported missing to the wanderer’s network (Hayashi, 2016). The programme, which started in the municipality of Omuta in 2001, has since scaled nationally, with 40% of Local Authorities establishing similar models (Hayashi, 2016).
Box 3.2. What’s in a name? Strategies to reduce stigma and increase awareness for dementia in Japan
As one of the most rapidly ageing countries in the world, Japan has faced the challenges of an increasingly ageing population more quickly than many other OECD countries. The share of the population aged over 65, and over 85, is the highest in the OECD, at 27% and 8%, respectively (OECD, 2017). By 2050, current estimates indicate that 36% of the population will be older than 65, and 15% will be over 85. To prepare for its ageing population, Japan has introduced significant reforms to its long-term care system in the past decades, most notably through the introduction of the Long-Term Care Insurance (LTCI) programme in 2000. Compared with most other OECD countries, the proportion of the elderly population receiving care at home is high: as one measure, the number of long-term care beds in institutions and hospitals in 2015 was the fifth-lowest in the OECD (OECD, 2017). Japan’s social care system reflects this, with a strong emphasis on providing community-based comprehensive care for the elderly (Hayashi, 2015).
In recent years, the country has taken important steps toward making its communities more liveable for people with dementia and their families. As a part of a move to reduce the stigma associated with the disease, the official name for dementia was changed in 2004. The process, which included public consultation, aimed to develop an alternative name for dementia that conveyed the seriousness of the condition but did not carry the strong stigma attached to the previous name (Miyamoto et al., 2011). A similar re-naming was previously undertaken for other cognitive disorders, including schizophrenia. Research indicates that the change in name and accompanying awareness campaigns helped to reduce the stigma around schizophrenia. Similarly, there is evidence that people with dementia have begun to increasingly speak in public about the condition since the change in name (Koike et al., 2015). Similar approaches to renaming dementia have been considered in other Asian countries where the name for dementia has insulting or stigmatising connotations (Chiu et al., 2014).
Alongside the official name change for dementia, from chiho to ninchisho, the government launched an ambitious public campaign that aimed to build awareness and understanding around dementia (Miyamoto et al., 2011). The 10-Year Plan to Understand Dementia and Build Community Networks comprised four components, including training one million dementia supporters, developing dementia-friendly communities, creating support groups for people with dementia and their families, and providing case management for people with dementia and their carers.
Japan’s experience integrating its launch of a new name for dementia with an ambitious community-based sensitisation programme offers an interesting lesson in how messaging can be creatively used to re-sensitise communities to a previously highly stigmatised disease like dementia. It is possible that people were more receptive to the awareness campaigns given the new name and positive way in which they were conducted.
In the United States, a number of states have adopted an alert system to solicit community support when a person with dementia goes missing. Modelled after the alert system adopted for child abductions, Silver Alerts disseminate missing-persons alerts across social media, local media outlets and roadway signs to alert the public. Thirty six US states currently use Silver Alert programmes to engage the community in helping find people with dementia who are missing.
Engaging local businesses, public services, and community members can improve the daily life of people with dementia
Over 90% of OECD countries have in place at least some dementia-friendly activities. In addition to developing community interventions that address specific behaviours exhibited by people with dementia, some communities have developed dementia-friendly awareness and training programmes specifically for certain public and private sectors that are likely to come into contact with people with dementia. However, in almost all cases, such activities are organised on an ad-hoc or voluntary basis, and their availability can vary significantly even within one country.
In Austria, an interactive training programme for police officers has been implemented through the Security Academy of the Interior Ministry. The internet-based training, taught in three short modules, helps police officers to recognise a person who may have dementia and teaches them behavioural strategies to help de-escalate situations in which people with dementia may be agitated or otherwise exhibiting behavioural or psychological symptoms of dementia. Police stations with high participation can apply to have their station certified as dementia-friendly. 70% of police officers in the police station must have completed at least one module and passed an exam related to the training. The station must further demonstrate that they engage with the broader community in dementia awareness, such as working with staff at nursing homes to address wandering and other behavioural challenges. Since the programme was established in 2013, 25 police stations have been certified, with 2 000 police officers trained in dementia awareness and response.
A number of countries have developed programmes to improve dementia awareness among pharmacists. Given their role in distributing medicine and frequent contact with patients, pharmacists have a unique role to play in helping people with dementia, particularly with regard to taking steps to ensure they continue to take any needed medications and observing changes in their behaviour over time. Pharmacists often have long-term, trusting relationships with their patients and often have a comprehensive view of the multiple conditions many of their patients with dementia may be living with (Pharmaceutical Society of Australia, 2014). In Flanders, Belgium, 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, which was rolled out in February 2017, 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. Similar dementia-friendly pharmacy initiatives have been developed in other OECD countries, including Australia, Canada, the United Kingdom, and the United States.
Most dementia-friendly training programmes targeting the general public require relatively low financial and time investments. Becoming a dementia friend in the United Kingdom, for example, requires attending a one-hour information session, or registering online and viewing an informational video. Where engaged, private companies have proven receptive to supporting efforts to increase awareness about dementia. In the United Kingdom, large businesses including Marks and Spencer’s, Lloyd’s Bank, and Superdrug have trained their staff to become dementia friends. By 2014, the enrolment of dementia friends through the business sector was twice that of targets set by the Prime Minister’s Challenge (Donnelly, 2014). By 2020, the country aims to have 25% of FTSE 500 companies certified as dementia friendly. Dementia friendly charters have been developed separately for the financial services, technology, housing, and retail sectors. In encouraging large businesses to become involved in dementia friendly initiatives, countries can expand the reach of their campaigns at relatively low cost. Companies also benefit, with their involvement helping to reflect an image of corporate social responsibility and commitment to social inclusion, two values increasingly important in the corporate environment. Dementia-friendly initiatives have frequently been spearheaded by non-governmental organisations and advocacy groups. In Germany, for example, Aktion Demenz has played an important role in promoting dementia-friendly communities across the country.
Box 3.3. Promoting dementia-friendly communities in England
Ensuring communities are able to help people living with dementia live independently was a major focus of the Prime Minister’s 2020 Challenge on Dementia. As part of this challenge, the Alzheimer’s Society, with support from the Department of Health, developed foundation criteria for recognising dementia-friendly communities across England. Support for dementia-friendly initiatives far exceeded initial targets. By March 2015, 98 communities had met the foundation criteria, surpassing the initial goal of reaching 20 communities by 2015. Today, more than 192 communities have been registered in the dementia-friendly foundation process – an area that covers a population of more than 26 million people. To provide clearer guidelines to communities interested in qualifying as dementia-friendly, in 2015, a Publically Available Specification for dementia friendly communities was developed in concert with the Department of Health and British Standards Institute.
3.3.2. Measuring outcomes for people with dementia living in the community
There is little standardised measurement of outcomes for people living with dementia in the community
At present, few countries evaluate how people with dementia live in the community in a regular or comprehensive manner. Eight of 21 OECD countries (38%) reported that they could estimate the proportion of people with dementia who live in the community, though they do not always do so. Eleven out of 21 OECD countries (52%) can identify people who have received a diagnosis of dementia and receive long-term care services at home. In Australia, the number of claims made for the Dementia and Cognition Supplement for home care packages can be used as a proxy for the number of people with dementia who live at home, though not all people with dementia require home care packages and not all who could benefit necessarily apply for the supplement. In Finland, a diagnosis of dementia is included in the social care registry that tracks both facility-based and home care services, and can serve as a similar proxy tool. Using the dementia registry SveDem and other tools, information on living conditions and treatment and care data, including prescriptions data and information about access to day care services, can be combined for people with dementia in Sweden. This kind of detailed information allows researchers and policymakers to determine whether people with dementia living at home are receiving the support they need.
Table 3.2. Data availability for community-based measures for people with dementia
Source: 2016-17 OECD Dementia Survey and Interviews.
Because there is no cure for dementia, many of the interventions in place to help people with the condition are focused as much if not more on improving well-being and quality of life as improving cognition. Yet measures of quality of life – including person- and carer-reported measures – are notably absent from regular data collections and measurement in nearly all OECD countries. Just two countries – Australia and Canada, reported that they have tools to regularly measure wellbeing or quality of life of people with dementia on a national level. In Australia, quality of life measures for people with dementia have come from national surveys, including the National Health Survey and Survey of Disability, Ageing and Carers, a regularly repeated national survey that includes questions related to function and community participation. Information about clinical outcomes (such as pain), functional ability, and social participation (such as visits) for people with dementia is available in Canada through the Continuing Care Reporting System and the Home Care Reporting System. In Denmark, the national dementia registry, launched in 2016, will collect person-reported indicators. Increasing the use of person-reported indicators is also under consideration in the SveDem registry in Sweden. An evaluation of eight European countries – Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden, and the United Kingdom (England) – examined how quality of life and quality of care differed across where people with dementia lived (care facilities versus at home), and found significant variation between countries, though not between settings (Beerens et al., 2014). Quality of life for people with dementia living in the community has been measured more extensively as part of research on specific interventions or academic studies.
In addition to generic tools developed to evaluate person-reported measures, such as the EQ5D, quality of life for people with dementia living in the community has been measured more extensively as part of research on specific interventions or academic studies (Algar et al., 2016). Many tools exist to measure person-reported outcomes in the dementia population. A recent review identified fifteen separate instruments to measure health-related quality of life in people with Alzheimer’s disease and other dementias (Perales et al., 2013). However, person-report outcome and experience measures have been less frequently used outside the research context for people with dementia, and are not well integrated into regular data collection mechanisms in most OECD countries. In the United Kingdom (England and Scotland), four health economies have begun piloting a standard set of dementia outcome measures developed by the International Consortium of Health Outcomes Measurement (ICHOM). ICHOM’s standard set, which was developed with the input of experts, people with dementia and their carers, includes indicators that use person-and carer-reported measures to evaluate quality of life. Memory assessment services, liaison services (to care homes and acute hospitals), mental health ward services, and community teams (who make home visits) are involved in collecting the standard set. In Doncaster – one of the three English sites for the pilot – data collected through the dementia standard set is being used to inform post-diagnostic service commissioning.
Box 3.4. The ICHOM Dementia Implementation Community
The International Consortium for Health Outcomes Measurement (ICHOM) is a non-profit organisation focused on promoting value-based health care through the definition and dissemination of disease-specific outcome measures that emphasises what matters to patients. As part of this work, ICHOM – in partnership with people with dementia, their carers, researchers, and clinicians, developed a Dementia Standard Set for people living with dementia.
In July 2016, a ‘Dementia Implementation Community’ was formed, involving three ‘health economies’ across NHS England to assess the feasibility of the ICHOM Dementia Standard Set, across health and social care. Organisations across Central and North West (CNW) London, Doncaster and Manchester, collectively implemented the set with the support of ICHOM. Through community teleconferences, health economies shared their learnings and collectively work together to achieve key milestones in the process and define the opportunities as well as logistical challenges of implementation.
Each health economy, having reviewed their commissioned dementia services, resources and current practice in data collection, selected to implement different indicators across different services within the care pathway. The selected indicators reflected clinical interest to further understand and evaluate the quality of service provision and its effect on patient outcomes.
A key objective of the pilot was to define the feasibility of implementing the set in clinical settings. In Doncaster, for example, an initial output highlighted the appropriateness of implementing questionnaires, such as the MoCA, amongst patients with varying levels of disease severity. A second objective was to evaluate the use of data to assess service provision. Pilot data collected in Doncaster is currently being used to inform the commissioning of services and staff, particularly in post-diagnostic support services.
Furthermore, the pilot has highlighted the importance of deploying a scalable data collection platform, particularly one that enables access to data across specialties and services involved in patient care. Following the initial phase of the pilot, the next step is to continue to pilot the patient-reported outcome measure questionnaires and variables in the set and reevaluate their use in additional settings. In Manchester, for example, the initial data collected will be reviewed alongside the results of a clinical trial and the pilot extended to a specialized clinic setting. The collation and analysis of data commenced in September 2017 with a report to follow. The team in central and northwest London is continuing data collection across their selected sites and intend to design an organisation-wide quality improvement and evaluation process, whereby outcomes data is used to evaluate the impact of applied change initiatives.
Defining and measuring the impact of dementia-friendly community policies remains a challenge
Dementia-friendly initiatives have been promoted and advanced in nearly all national dementia strategies or plans in OECD countries. Building a dementia-friendly society is frequently cited as the overarching goal of the national policy document. But what this means in practice is often less clear, with few countries supplying clear outcome goals for measuring what is meant by dementia friendliness, and when it can be considered to have been achieved.
In the United Kingdom (England), measures of dementia-friendliness have been clearly incorporated into the Prime Minister’s Challenge on Dementia 2020. An implementation plan developed together with the Challenge outlines targets for achieving dementia friendly communities, including making 50% of all Local Authority areas (a total of 75 Local Authorities) and 25% of FTSE 500 companies dementia-friendly by 2020 (Challenge on Dementia 2020 Implementation Plan, 2016). These targets build on ambitious goals set during the first Prime Minister’s Challenge on Dementia, launched in 2012, which aimed to train one million people to become “dementia friends” and helped to launch awareness about building dementia-friendly communities in the United Kingdom. Similar programmes were developed in the early 2000s in Japan, which in 2005 launched a “10-Year Plan to Understand Dementia and Build Community Networks.” Launched amid a national drive to reduce stigma and increase awareness for dementia which included an official renaming of dementia in Japanese, the campaign also aimed to train one million “dementia supporters” through a three-level training approach. Both countries exceeded initial goals for training dementia friends: As of June 2017, more than two million people had been trained as dementia friends in the United Kingdom, while in Japan, 9.5 million people (as of June 2017) had attended training seminars by September 2014, with nearly all municipalities in the country offering training programmes by 2015 (Alzheimer’s Disease International, 2017).
Japan and the United Kingdom (England) represent two uncommon examples of countries that have developed explicit targets to measure progress towards achieving dementia-friendly communities. Even in these countries, however, the chosen indicators can be seen to be ‘intermediate’ measures that count outputs – such as dementia friends, or the number of dementia-friendly communities – rather than outcomes, such as improvements in quality of life or delayed time to institutionalisation among people with dementia. Given the range of activities that can be considered “dementia-friendly,” and the difficulty of isolating community interventions from other influencing factors, it is challenging to link the impact of dementia friendly interventions with outcome measures such as health outcomes or even delays in institutionalisation. As dementia-friendly programmes become more commonplace, there has been some increase in research on the subject. In England, the Department of Health recently commissioned a research study, led by the University of Hertfordshire, to evaluate the evidence base for dementia-friendly communities. Patient- and carer-reported measures may offer an opportunity to develop an understanding of the impact of these programmes on the quality of life of people with dementia and their families.
3.4. Better support for families and informal carers
3.4.1. Supporting informal carers is a crucial part of dementia care
OECD countries increasingly promote community-based care and ageing in place, and the role played by informal carers will become even more important. It may also be more challenging. As people stay in the community with increasingly advanced cases of dementia which would previously have been cared for in institutional or inpatient settings, carers may be tasked with providing with more intensive or complex care. The burden of providing informal care, particularly for people with dementia, affects the physical and mental health and quality of life of the carer. It can also influence the health of those they care for. Informal carers play an integral role in caring for people with dementia. It is crucial that policies that work to improve the quality of life and health outcomes of people with dementia must also consider those who care for them.
What constitutes informal care can be challenging to define and difficult to compare. Informal carers may provide care to friends or family members, or may do so as part of non-contractual voluntary work. They may also be undeclared or illegal caregivers who receive a salary or compensation from the care recipient, but do not have an official contract with them and are not registered with relevant social security offices. In the following section, we focus our attention on informal caregivers who are family members, friends, or uncompensated volunteers who provide support to care recipients on a regular basis and who do not receive cash or other benefits beyond those intended to support caring activities.
Many people living with dementia rely on their families and other informal carers
Across the OECD, more than one in eight adults over fifty provides informal care to a friend or family member (with or without dementia) at least once per week (Figure 3.2). The variation in informal caring varies substantially between countries, ranging from 8% in Poland to more than 20% in the Czech Republic. The intensity of caring also varies: though more than 10% of adults over 50 in the Czech Republic provide informal caring services on a daily basis, just 4% do so in Switzerland and Sweden. Lower rates of more intensive (daily) caregiving are seen in countries where the formal long-term care sector is better developed. Even before the challenges that can come with caring for friends of family members living with dementia, older adults regularly face their own health challenges.
Informal carers appear to carry a higher burden of care for people with dementia in countries with less developed or comprehensive long-term care sectors. In an evaluation of the economic impact of dementia in Europe, the costs of informal care were estimated to represent 40% of the total costs of dementia in Northern and Western Europe, but 75% of the total costs of dementia in Southern and Eastern Europe (Wimo et al., 2011). Informal care costs can include the cost of unpaid labour provided by informal carers, the opportunity costs associated with forgoing work in order to provide care, and the direct out-of-pocket costs that informal carers spend on care. A recent analysis of the economic costs of dementia in Chile similarly found that 75% of total dementia costs could be attributed to informal care and other indirect costs and found that even within the country, households of lower socioeconomic status depended more on informal care than households of higher socioeconomic status, who could purchase more formal medical and social care (Hojman et al., 2017).
Figure 3.2. Share of informal carers among population age 50 and over
Note: The definition of informal carers differs between surveys. 1. United Kingdom refers to England.
Source: OECD Health Statistics 2017, http://dx.doi.org/10.1787/health-data-en.
Figure 3.3. Informal care costs as a share of total dementia costs
Source: Wimo et al. (2017).
Women make up the majority of informal caregivers in nearly all OECD countries. Across 21 OECD countries, three in five informal carers providing daily care were women (Figure 3.4). Informal carers are less likely to be formally employed, and are more likely to be employed part-time when working, when compared with non-caring workers. Previous analyses have suggested that women carers are particularly at risk of poverty, possibly associated with their lower rates of participation in the labour force (Carmichael and Charles, 2003; Heitmueller, 2007; Viitanen, 2005; Colombo, F. et al., 2011). They may also have been more dependent on their spouse or other friend or family member for whom they are now caring (Colombo, F. et al., 2011).
Figure 3.4. Share of women among informal daily carers aged 50 and over
Note: The definition of informal carers differs between surveys. 1. United Kingdom refers to England.
Source: Wave 6 of the Survey of Health, Ageing and Retirement in Europe (2015), Survey of Disability, Ageing and Carers for Australia (2015), wave 7 of the English Longitudinal Study of Ageing (2015), wave 12 of the Health and Retirement Survey for the United States (2014).
Providing informal care is linked with worse health outcomes, particularly mental health
The association between informal caring and poor health outcomes is well documented across studies (Thomas et al., 2015; Stansfeld et al., 2014; Pinquart and Sörensen, 2003; Schulz and Sherwood, 2008; Cannuscio et al., 2002; Ory et al., 1999; Adelman et al., 2014; Chiao, Wu and Hsiao, 2015). A longitudinal study using data from the Nurse’s Health Study in 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). Caring for a parent also led to a higher risk of depression and anxiety. Caregivers are much more likely to report poorer subjective quality of life than similar adults who do not care for family or friends (Thomas et al., 2015; Pinquart & Sörensen, 2003). Providing care has also been associated with poorer physical health outcomes, though these effects are smaller than the effects of caring on mental health. People who provide care that includes support for activities of daily living (ADL) have also been found to disregard their own personal well-being, including consuming poorer diets and neglecting to take their own medications or attend doctor’s appointments (Schulz and Sherwood, 2008, Burton et al., 2003). The length and intensity of caring have been associated with higher risks of stress, particularly among women (Hirst, 2005). Given the gradual onset of dementia, many people may find themselves caring for a friend or family member with the disease for an extended period of time, often years.
Caring for people with dementia has been found to negatively affect the health of the caregivers (Etters et al., 2008). 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 (Pinquart & Sörensen, 2003, Ory et al., 1999). Carers for people with dementia have been found to provide more intensive caring than other carers (Ory et al., 1999). Caregiving burden is particularly high when the person with dementia has high needs, including behavioural and psychological symptoms of dementia (BPSD) (Vaingankar et al., 2016). They report more difficulties with employment, higher overall stress, less time spent on other activities, and more mental and physical health problems than caregivers to people with other conditions (Ory et al., 1999). In Norway, family members were found to spend an average of 160 hours caring for their family member with dementia in the month prior to institutionalisation. By contrast, home-care nurses provided 16 hours of care, and home help aides between one and two hours (Bergh et al., 2015). Caring for people with dementia is seen to be more difficult than for many people with physical disabilities. This can be due to a combination of factors including the more intensive supervision often needed by people with dementia, higher prevalence of depression among those with dementia, and difficulties with communication, including appreciation for the caregiver (Schulz and Sherwood, 2008). In addition, caregivers are often ill-prepared to respond to the progressive nature of the condition, and the growing number and increasing complexity of the needs of people with dementia. These challenges can further contribute to emotional strain and burn-out among caregivers.
Caregiver stress can impact the health outcomes of people with dementia
The physical and mental health impacts of caring for people with dementia are significant, and deserve attention and tailored interventions that can help to reduce the impact on the caregiver. But improving caregiver health is also important to the well-being of those they care for. Caregiver burden is an important determinant of early institutionalisation (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 likelihood toward institutionalisation (Spitznagel et al., 2006; Spillman and Long, 2009). 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 the people they care for (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.
3.4.2. OECD countries have developed a range of policies to improve caregiver well-being, but more needs to be done to increase the take-up and impact of these services
The political focus on improving caregiver outcomes has grown
With the impact of caring on both caregivers and recipients of care well established, countries have developed a range of interventions that aim to improve the quality of life for carers. In recent years, a number of countries have signalled their commitment to reducing the burden on caregivers through the development of national caregiver plans and strategies, including Australia, Ireland, and Norway. Many caregiver interventions, including these national plans and strategies, address caregivers broadly, rather than focusing specifically on those providing care for people with dementia. Virtually all countries with national dementia strategies and plans make explicit reference to improving conditions for informal carers, though the level of detail provided varies across countries. Austria’s national dementia strategy, for example, identifies informal carers as an important target group of the strategy and calls for improved skill-building for informal carers. In Norway, the national dementia plan has integrated aspects of informal care policies outlined in the country’s national care plan and focuses on improving support, respite and training for informal carers. Family carers are compensated by municipalities, who are responsible for long-term care (Colombo, F. et al., 2011). In England, the 2014 Care Act has enshrined new rights for informal carers, including a right to a needs assessment by the local authority, and the provision of subsequent support.
Countries have adopted a combination of dementia-specific and broad-based carer policies to improve caregiver outcomes. Broad caregiver policies including workplace legislation providing for (paid or unpaid) caregiver leave, flexible work arrangements, respite care, and government financial supports or carer subsidies. These policies do not need to be explicitly targeted to people living with dementia for them to make a substantial impact on the lives of those with dementia and their informal carers. Other interventions are much more targeted at people caring for family members or friends with dementia, including skill-building and training programmes and counselling and support groups.
Many countries have developed policies that protect working carers
The time invested in caring can be substantial, particularly when care recipients have dementia. For informal carers who are still working, the dual demands of formal employment and carer responsibilities are often at odds, and can put considerable strain on performing well in one or both. The population of informal carers who continue to work is substantial, with between 40 and 60% of informal carers in Australia participating in the labour force alongside caring (Bittman, Hill and Thomson, 2007). Even when informal carers remain employed, they earn less than non-carers with equivalent qualifications, suggesting that the flexibilities needed to provide care – particularly intensive care – may limit employment opportunities (Carmichael and Charles, 2003). As the intensity of caregiving increases, the proportion of informal carers employed in the formal labour market falls, an effect that is particularly pronounced for female carers (Bittman, Hill and Thomson, 2007, Carmichael and Charles, 2003). Many informal carers are family members – often spouses or children – of the people with dementia they care for, and may have previously contributed to the finances of the household. Providing informal care can displace at least some of the family’s earnings and can lead to increased stress over finances, a major driver of caregiver stress (Spillman and Long, 2009). The rising role of women in the labour market and their growing contribution to household finances has further increased the opportunity cost of forgoing or reducing employment for informal care (Carmichael and Charles, 2003).
Policies that allow informal carers to take leave from their positions or adopt flexible work schedules can help them stay in the formal employment sector. Across the OECD, 27 countries have adopted policies that provide for leave to care for family members. In 19 of these countries, leave is paid for at least some of the time spent caring.
Table 3.3. Leave entitlements to care for sick or ill family members
Source: OECD Family Database 2016.
More than half of OECD countries (19 countries) offers leave entitlements for family carers that includes at least some period of paid leave. In most countries offering paid leave for informal carers, leave is paid for a limited duration, in most cases for less than two weeks, though unpaid leave is often much longer. Paid leave is also sometimes tied to the employee’s sick leave allowance. Both Israel and New Zealand deduct the time spent caring for sick family members from the carer’s own allotted sick leave. In the Netherlands and Spain, employers are allowed to refuse requests for care leave if there is a strong business cause for doing so. A number of countries have criteria based on employer size (Ontario Canada, the United States), or employment history (Canada, Ireland, New Zealand, the United States) that can exclude some carers from eligibility. Given the long duration of dementia, this short period of paid leave can be of limited help. Programmes that allow for more work flexibility, including reducing hours and teleworking, may be better suited in supporting carers of people with dementia over the longer-term. In the United Kingdom (England), for example, all employees – including carers – may request to have a flexible working arrangement after an initial 26 week qualifying period. In Germany, a family care leave scheme was recently introduced to support employees needing to support a relative requiring long-term care. Employees may take up to six months off of work full-time, or elect to work part-time for up to 24 hours. Three months of leave is provided when caring for relatives at the end of life. In addition to the leave provided, employees have the opportunity to access interest-free loans (conditional on employer size) to help support them while their income is reduced. Respite care is available in some countries, but is often limited by local capacity constraints.
In addition to policies developed to support the livelihoods and financial stability of caregivers and their families, interventions that support the caregiver’s own personal well-being can improve the quality of life of both carers and the people they care for. Respite care, which is designed to offer caregivers a break from their regular caregiving duties, is regularly cited as an important component of support for caregivers. Some respite care services are designed to offer short-term, often regular breaks in care. These often included day care services delivered through municipalities and community organisations, or in-home care services. In addition to such day services, some countries offer caregivers the opportunity to take longer breaks in caring by offering temporary placements in residential care services, such as local nursing homes. Emergency respite care services, which offer caregivers respite services on short notice, are less regularly available, though a number of countries have recognised the need to develop these programmes further. As with policies supporting caregiver livelihoods, most respite care services are not offered specifically for caregivers of people living with dementia, but are available more broadly to people living in the community with an assessed level of need.
While many countries report to have overnight respite care services, its availability can vary greatly by municipality or local community. In some countries, including Norway, Denmark, Ireland and Sweden, respite care is determined based on need, and recommended or prescribed as part of the personalised care plan developed in concert with case managers. In Austria, respite care is available as part of social care supports for informal carers, and must be applied for. Because of the high cost of providing respite services, some countries have determined legal maximums for the number of days carers may receive overnight respite care services. In New Zealand, respite care is funded to a maximum of 28 days per year, while in Israel, no more than two weeks are reimbursed.
Few countries have made access to overnight respite care a right for informal carers, though Germany offers a legal entitlement to a minimum number of respite care and short-term care days per year. Families can be reimbursed for up to six weeks of respite and short-term care per year. To provide financial stability to families, cash allowances for caregivers continue to be paid (at 50%) even when carers are using respite or short-term care services.
Overnight respite care is commonly provided by offering temporary residence in local nursing homes or other long-term care institutions. Many municipalities have developed agreements with local nursing homes to use a designated number of beds for respite care, though the availability can vary substantially by community. Innovative respite care services that promote carer relaxation while also integrating activities for people with dementia have also been developed. In Austria, a holiday respite care programme for people with dementia and their families integrates external care for people with dementia and training for carers into a holiday for the family. Carers are able to enjoy a break from their caregiving duties in a holiday setting without being fully removed from the person they care for, allowing them to relax without as much worry about the conditions of the person they normally care for as had they left them in a residential care setting (WHO, 2012).
Day care services are available, though they are not always dementia-specific and uptake can be low
Many OECD countries have developed day services that are exclusively available for people living with dementia. While Alzheimer’s Disease International has published a guide to developing community-based day care centres, most countries have not developed guidelines or other recommendations related to day care for people living with dementia. Dementia-specific day programmes are often run by nongovernmental organisations, notably national Alzheimer’s Associations, though in some countries – including New Zealand and Sweden – dementia-specific programmes are offered through local government services and can require a formal diagnosis of dementia for attendance. Day care services and programmes can vary significantly between centres. In Israel, day centre services are offered by the Ministry of Welfare and multiple non-governmental agencies, including the Israel Alzheimer’s Association. In Sweden, day care is the most common form of non-medical support for people with dementia and is integrated into the care pathway. Case managers recommend day care as part of their individualised care plan, and day centre facilities then report back to case managers about how these plans are being followed. Day care is similarly recommended by case managers or care co-ordinators in other countries, including Ireland and Norway.
In many countries, uptake of day care services is strong, with some countries reporting that available services are oversubscribed. A 2009 review of available day care services in Greece found that demand for day care far exceeded available supply, with only about 5 000 people attending day care centres and many more on waiting lists for admission. Even in countries where day services are available, they can be geographically concentrated, particularly around cities. In New Zealand, both dementia-specific day centres and general day care programmes are offered throughout the country, though important gaps in coverage persist in rural areas of the country.
Across the OECD, day care services are the most widely available form of respite care for people living with dementia and their carers. Day care services can offer clear benefits to the person living with dementia. They often provide an important source of social interaction and stimulating activities for people with dementia, who would otherwise spend the majority of their time at home. The role of day centres as a form of respite for carers may not be their primary purpose at all. In contrast, longer-term respite care services, in which people with dementia are temporarily placed in residential care, can be more directly linked to relieving the burden on caregivers, though they can also serve as a ‘test’ period to evaluate how someone will do in institutional care. In Chile, the role of community-based day care centres is an integral pillar of the country’s national plan on dementia. Notably, it strongly emphasises the role of informal carers in community-based care, going so far as to require people with dementia to be partnered with a caregiver in order to access services. This is only the second plan in Chile – after services for childbirth – that requires the participation of more than the direct patient (Box 3.5).
In many communities, demand for day care services, particularly those tailored to people with dementia, is high. However, in others participation rates have been reported to be very low. This raises questions about why in some circumstances, available services are not being fully utilised. This is especially perplexing given that in assessments of carer needs, carers frequently cite the availability of respite care as one of the most desired support services (Leong et al., 2001, Neville et al., 2015). In Switzerland, for example, the supply of day centre places much exceeds current levels of demand. This raises questions over what barriers might be keeping informal carers from accessing available services. Barriers in information and awareness of available services, negative connotations about respite care, and concerns about poor quality compared to self-delivered care have been cited in literature on respite care as possible obstacles to increasing the use of available services (Neville et al., 2015, Ashworth and Baker, 2000). In addition, financial and physical access barriers should be considered when developing day care services. In some circumstances, short day schedules and a lack of transportation services may preclude working carers from using available day centres. In Lucerne, Switzerland, local day centres have developed a full service around day centre activities. Staff from the day centres comes to the home of participating persons, helping them to get ready for the day and driving them to and from the day care centre. These options can give informal carers more flexibility to send their family members to available care where their schedules might otherwise not have allowed. Providing transportation and other linking services may be particularly important in rural areas, where the distances to available services may be considerable. In a previous qualitative study from Scotland, transportation and the effort to get family members with dementia ready to leave the house were cited as major barriers to accessing available services (Innes et al., 2005). Given the range of respite care services and activities, the obstacles to greater uptake are likely highly context-specific. Where uptake of available day care and other community services is low, communities should evaluate the needs of informal carers in the area to better understand how such programmes could be better tailored to meet their needs.
People who care for friends or family members with dementia will nearly always need some form of training or skill-building support to help them prepare for their new role. In recent years, a strong body of evidence – including a number of randomised control trials – has emerged for the effectiveness of caregiver training and skill-building interventions on caregiver burden, stress levels, and quality of care delivered (Gitlin et al., 2015). Individual behaviour management therapy to help caregivers respond to behavioural problems has been found to help reduce depression among caregivers for a sustained period, while caregivers who had received training on coping strategies was also found to reduce psychological distress (Selwood et al., 2007). A wide range of pilot interventions to improve caregivers outcomes have been identified in recent literature, with at least seven meta-analyses and 17 systematic reviews conducted in recent years, with more than 200 caregiver interventions identified as effective (Gitlin et al., 2015). Indeed, a major gap identified by researchers appears to be the delay in translating established research findings into broader policy interventions that reach caregivers in need of support.
Box 3.5. Developing integrated community-based day care centres for people with dementia in Chile
The Kintun model of community-based dementia care offers an informative example of how multiple services can be effectively integrated to deliver care that promotes community participation for both people with dementia and their carers. Despite a relatively high income per capita, large health inequalities persist throughout Chile, and few services currently exist to support people with dementia and their family carers (Gajardo et al., 2017). Indirect costs for dementia care – largely attributable for informal care – have been estimated to comprise 75% of the total cost of dementia in Chile, with caregiver burden particularly high among people of lower socioeconomic status (Hojman et al., 2017). Social costs account for just 5% of costs (Hojman et al., 2017).
Starting in 2013, the National Service for the Elderly launched a pilot project in the municipality of Penalolen that aimed to improve the independence of community-dwelling people with dementia (Kardish, 2014). The programme was designed around the concept of day-care centres for the elderly, but offers services – through day care, case management, home visits, and training for carers – that are more highly specialised and targeted toward people living with dementia than general day services. Five major components define the programme, which is open to residents of the municipality who are over the age of 60, participate in the public healthcare system, have a carer over 18, and who have been diagnosed with mild to moderate dementia:
Comprehensive geriatric assessment: The initial geriatric assessment identifies unmet needs and individual care plans are developed together with the person with dementia’s family.
Day care: Day care services are offered once to twice per week and are designed to offer respite for family caregivers while offering people with dementia social interaction and stimulation. Individual groups are limited to fewer than 17 participants, and activities are developed based on the abilities of the group and their personal backgrounds. In order to facilitate participation, the day care services include transportation to and from the care centre and daytime meals.
Home visits: People with dementia receive at least one home visit as part of the Kintun programme. The home visit provides information to families on the skills needed to care for people living with dementia in their own homes, including reducing risks.
Caregiver training: Participants in the Kintun programme who have dementia must participate with a family carer. Family carers must commit to a minimum of two training sessions, which address caregiver readiness and response to difficult situations and link caregivers to available resources and support services in the community.
Case management: Participants receive case management to help them through different components related to the programme. Broader case management, for help with health and social services beyond the Kintun programme, is not offered.
The day care programme offered through Kintun is tailored specifically toward people with dementia, and includes activities related to cognitive function and social and community interaction. Many of the chosen programme components connect in some way to culturally significant activities. Exercise and social interaction, including with the broader community through activities such as gardening and museum visits, are also valued. Initial evaluation results of the Kintun programme suggest that while there are no cognitive benefits, there were reductions in falls, improvements in the behavioural and psychological symptoms of dementia, and improvements in how carers perceived people with dementia living at home (Aravena et al., 2017a; Aravena et al., 2017b). Based on the success of the initial Kintun community centre, the Ministry of Health began supporting the programme in 2015, with plans to build another nine centres across Chile in the next two years.
Nearly all OECD countries interviewed for this analysis reported that caregiver training and support programmes are available following a dementia diagnosis. Frequently offered caregiver interventions include short-term community-based training programmes, online training support tools, and in-person community support groups for families and carers of people with dementia. In the majority of cases, these programmes are primarily delivered by the nongovernmental sector, with Alzheimer’s Associations and other dementia organisations playing a substantial role in the organisation and delivery of post-diagnostic caregiver support. In New Zealand, for example, Alzheimer’s New Zealand and Dementia New Zealand both provide support groups and basic training seminars, run largely on a voluntary basis, to provide information on behaviour management, recognising symptoms, and information about the life course of dementia.
Caregiver-directed training and counselling is less frequently offered through government services, though where such programmes have been initiated, evaluations on their impact and cost-effectiveness have sometimes been encouraging. In the United States, the Resources for Enhancing Alzheimer’s Caregiving Health (REACH) intervention was implemented across the Department of Veterans Affairs following the positive impact demonstrated by the programme in a randomised controlled trial conducted by the National Institute on Ageing an National Institute of Nursing Research (Nichols et al., 2011; Nichols et al., 2017). In addition to the VA, REACH has been incorporated into the U.S. Indian Health Service (IHS) and many states’ Alzheimer’s and dementia plans.
3.4.3. Countries are beginning to recognise the importance of measuring outcomes for carers
Improving the effectiveness of policies that support carers of people with dementia relies on the effectiveness of existing policies being measurable. The BeACCoN Network in Canada recently undertook a project that aimed to understand what data on caregivers is measured in OECD countries. This work, which included a literature review and national policy interviews with seven OECD countries (Australia, Canada, Ireland, Spain, Sweden, the United Kingdom, the United States) on caregiver issues, suggests that while some countries have begun to develop caregiver outcome measures, data on carers is not well developed in OECD countries.
National-level data on carers has begun to be collected in some OECD countries, including Australia, Canada, the United Kingdom and the United States. These data are often collected by government statistical agencies, such as the Australian Bureau of Statistics or the Office of National Statistics in the United Kingdom, but may also collected by NGOs, such as the Change Foundation in Canada, Carers UK in the United Kingdom or the National Alliance for Caregiving in the United States.
Existing measures focus mostly on outcomes with fewer relating to experiences and costs
Health systems across OECD countries have increasingly adopted measurement frameworks that address multiple factors, including patient outcomes, experience, and costs. Results from a literature review and interviews conducted between the BeACCoN network and national policymakers indicate that the majority of current measurement is focused on outcomes, with fewer measures available for experiences and costs.
Table 3.4. Carer measurement tools
Box 3.6. Measuring carer outcomes, experiences and costs: The case of Australia
The Australian Bureau of Statistics conducts a survey of ‘ Disability, Ageing and Carers’ which collects data from people aged 60 and over, people with disabilities and their carers. This is a national survey that collects data on carer outcomes and experiences including demographics of carers, who carers provide care for, what their caregiving involves, what the impact of caring is, and patterns of formal service use with informal care.
The Australian Government Department of Families, Housing, Community Services and Indigenous Affairs use numerous surveys of young carers in Australia. These surveys include the Census of Population and Housing (2006), Survey of Disability, Ageing, and Carers (2003), and Household, Income and Labour Dynamics in Australia (HILDA) survey. These surveys cover carer outcomes, experiences, and costs. These include measuring hidden carers, duties of carers, income support, free time, emotional impact of caring, benefits of caring, post-school education, training and labour market participation.
The Mental Health Carers Report by the Mental Health Council of Australia conducts a survey of 50 questions specifically aimed towards carers of people with mental health issues. This survey covers carer’s outcomes, experiences and costs including mental and physical health, perceived communication with clinicians, insufficient recovery-based care, and quality of staff.
A non-profit organisation, Carers Australia New South Wales (NSW), conducted a survey in 2016 which collected from carers information on outcomes, experiences and costs including health and well-being, employment, finances, service access, and unmet needs.
Four of fourteen countries reported measuring the costs of informal caregiving. One example of this is from an Australian study which included a quantitative analysis of existing national data sets to assess income support for carers, in addition to labour market participation (Commonwealth of Australia, 2009). As well, in Canada, a report by Statistics Canada reported on the financial and professional consequences of being a carer and out-of-pocket costs which included transportation, medication, rehabilitation, overall amount spent, amount reduced from paid work, and type of support (Turcotte, 2013).
Few countries reported that caregiver experience is regularly measured. In some cases, regional-level planning bodies incorporated caregiver experience into their measurement systems. In Ontario, Canada, for example, the Local Health Integration Networks (LHINs) collect information on caregiver experience related to home and community care services. This information is used to provide the home care sector with quantitative data that can be used to compare patient’s experiences when they receive services and to help the home care sector determine where more work is needed (Health Quality Ontario, 2017). In Australia, the Survey of Disability, Ageing and Carers (SDAC) is a continuous survey which was conducted over various time periods from 1981-2009 and since 2009 has been conducted every three years. This survey collects information on carer experiences including what activities carers assisted with and the relationship between carer and care recipient. This information is used to measure prevalence of disability across the country and to provide demographic and socio-economic data on those with disabilities, older adults, and their carers. This data can then be compared to the general population and used to estimate the number of carers for those with disabilities and over the age of 65, while also gathering more in-depth information about these carers (Australian Bureau of Statistics, 2017).
One of the areas of measurement that is particularly lacking is the positive impact of caregiving. Through the environmental scan, only Australia measured the positive benefits of caregiving. One report from Australia specifically looked at the positive benefits of young carers including being proud, strengthening the bond with family members, and gaining caring skills (Commonwealth of Australia, 2009). Carers have cited that caregiving resulted in feeling companionship, fulfilment or reward, and enjoyment (Cohen et al., 2002). These carers who reported positive feelings were less likely to experience negative outcomes including depression, burden, or poor health (Cohen et al., 2002). Caregiver participants in a workshop held by the BeACCoN research network also emphasised that the positive aspects of caregiving should be considered in carer-reported measures.
Most measures for carers are self-reported and collected through surveys, but the timeliness of this data is not always sufficient for use in policy-making
Many of the outcomes that are important to carers, including their quality of life or mental health, are best measured by asking the carers themselves. Correspondingly, most of the data that has been collected on carers is self-reported through surveys. Surveys are often run nationally through statistics agencies and other governmental bodies, though regular surveys can also be run by NGOs. For example, Carers UK has developed a carer-specific survey that includes 70 questions asking about a range of factors, from the support that people receive to whether they are able to pay their utility bills.
In some countries (Australia, Canada, Finland, Ireland and the United Kingdom) surveys exist that target carers specifically. In Australia, for example the Australian Bureau of Statistics collects data on a range of variables including location, age, whether the carer is the primary caregiver, information on the care recipient’s condition, housing, and other factors. They also collect information about care recipient needs, such as activities of daily living (ADLs). In England, the National Health Service (NHS) conducts a specific household survey that includes caregiver measures such as who they are caring for, services provided, and health impacts of unpaid care, while local authorities in England are also required to survey carer quality of life. In this survey, carers are asked about the care recipient: i.e. parents, children, etc. Other groups such as non-governmental organisations (NGOs) collect data and do comparisons by age and other population level variables. These groups collect data on variables such as life satisfaction, psychological distress, and employment. For example, the National Alliance for Caregiving in the United States conducted an Online Caregiving in the US survey and collected data on: Experience, Outcome, and Costs. This included prevalence of carers in the US, demographic characteristics, financial burden of carers, nature of carer activities, and carer stress, strain, and health.
While the information collected through national surveys can be comprehensive, the timeliness of the data means it cannot always be used to regularly inform policymaking. In Spain, for example, the National Institute of Statistics conducts a comprehensive survey called ‘The Primary Caregivers Questionnaire’. This questionnaire obtains very detailed information on caregiving and allows for comparisons on gender and outcomes such as health status. It also looks at frequency, intensity and duration of care, types of tasks performed, and the relationship between carer and care recipient. It then also asks dichotomous questions about health status impact on professional or economic life leisure, social life family life, or personal care. Though comprehensive, the survey is conducted only every ten years. This makes it difficult to measure how policy changes may affect caregiver experience and outcomes.
A similar challenge can be seen where census data is used for caregiver measurement. The 2011 census in the United Kingdom asked the whole population whether and the intensity with which they provide unpaid support alongside questions about ethnicity, faith, employment, gender, and health status. However, the next census will not be conducted until March 2021, which limits the usefulness of this data in assessing caregiver policy.
Surveys that collect data on a representative subset of the population can be run more frequently. Surveys of ageing, such as the Survey of Health, Ageing and Retirement in Europe (SHARE), the English Longitudinal Study of Ageing (ELSA) and the Health and Retirement Study (HRS) in the United States ask questions about the provision and receipt of informal care. Data are collected roughly every two years for people aged over 50.
Box 3.7. Different measuring bodies looking at carer measures
Canada – Collects data nationally via Statistics Canada and the Health Council of Canada surveys, regionally such as through Local Health Integration Networks (LHINs) and by the health regulator, Health Quality Ontario in Ontario, and advocacy groups such as the Change Foundation
Australia – Collects data from the Australian Bureau of Statistics, the Australian Institute, and NGOs
United States – Collects data through The Office of the Assistant Secretary for Planning and Evaluation, US Department of Health and Human Services; the National Alliance for Caregiving; the AARP Public Policy Institute; and, the United Hospital Fund
United Kingdom – Collects data via the Office for National Statistics; NGOs such as CarersUK; AgeUK; Dementia UK; Independent Age; Carers Trust; by region such as the Powys Carer Service and, Children’s Commissioner for Wales; ICHOM
The outcome measures used in research are not always reflected in systematic data collections
In addition to nationally-collected survey data used to assess carers, a variety of carer measurement tools have been developed that are used primarily in research contexts. In academic research, scales such as the Carer Quality of Life, Zarit Burden Index, Carer Strain Index, Subjective Burden Scale, and Burden Scale for Family Caregivers. are often applied. The Adult Carer Quality of Life Questionnaire helps researchers or practitioners who have contact with carers. It assesses the quality of life of unpaid carers and can be used once or as a pre and post if testing the effects of a support or intervention (Elwick et al., 2010). The Zarit Burden Index is a carer self-report measure addressing mostly the personal and role strain of the carer (American Psychological Association, 2017). The Caregiver Strain Index is used to look at the subjective perceptions of the caretaking relationships by caregivers and the emotional health of caregivers (Robinson 1983). The Burden Scale for Family Caregivers is a tool used to assess subjective burden of carers in a very short time frame (Graessel et al., 2014).
While these research scales offer an important level of depth in evaluating carers, they are not systematically used by either government or non-governmental agencies outside of academia. This may be due to cost. For example, the Family Caregivers Support Agreement tool is used to assess support needs for carers providing care for relatives at home – however it must be purchased to be used (Evaloris). Also, the Zarit Burden Index must be purchased depending upon the type of study using it, for example non-funded academic users (i.e. individual medical practice) can use it for free, but funded academic research (i.e. projects being funded by industry, government, EU or charities) and commercial users (i.e. industry or for-profit) must pay to use the tool (MAPI Research Trust, 2017). Carer agencies and organisations have in some cases developed their own surveys and methods, which could imply a lack of appropriate tools for carer measurement. There is inconsistency of use in the different types of scales and it appears that many organisations are developing their own that are less academic and more able to measure what is actually important for carers. Future work should assess the usability and applicability of these tools to broader, non-academic contexts.
Box 3.8. Carer measurement in the United Kingdom and Australia
Australia – Many organisations in Australia are collecting data regarding carers including Australian Institute of Health and Welfare and the Australian Government Department of Health and Ageing; Australian Government Department of Families, Housing, Community Services, and Indigenous Affairs; Australian Institute of Family Studies and Australian Government Department of Families, Community Services and Indigenous Affairs, and Carers Australia NSW. Between this multitude of organisations, all aspects of the Triple Aim (outcomes, experiences and costs) are being measured.
United Kingdom – Many agencies are collecting information specific to different groups of carers (i.e. people aged 65 and over, carers and care recipients, and young carers). These agencies include CarersUK, AgeUK, DementiaUK, Office for National Statistics, Independent Age, Powys Carers Service, Children’s Commissioner for Wales, and Carers Trust. Although mainly outcome and experiences data are collected – cost is also measured by some organisations.
From the promising examples in the Australia, the United Kingdom and other countries, comprehensive measurement of carer outcomes, experiences and costs is not out of reach and OECD countries would do well to look to member countries’ experiences to consolidate and build upon.
Varying definitions of carers make cross-country comparisons difficult
The lack of a common definition for an informal carer across OECD countries can challenge international comparisons of caregiver well-being (Colombo, F. et al., 2011). Some countries limited the definition to include only those who provided assistance with a care recipient’s basic activities of daily living (ADLs), for example, while other countries expanded the definition to include those who also provide assistance with a care recipient’s instrumental activities of daily living (IADLs) (Colombo, F. et al., 2011). Moreover, some people may not consider themselves to be carers, even where they provide caregiving services (Colombo, F. et al., 2011). Standardising the concept of informal caring to the greatest extent possible could better enable comparisons across countries.
Box 3.9. Defining carers
How carers are defined varies widely across countries. In New Zealand, for example, informal carers are restricted to people who care for children and young persons (aged 25 and under). Other countries, including Ireland, the United Kingdom, and Spain use a much broader definition for informal carers, and consider both family members and friends to be caregivers so long as they provide help with care and are not paid to do so.
Who is considered a carer can even differ within one country depending on the context. For example, there may be an interest in a more inclusive definition to determine who would qualify for services such as training or education, whilst a more stringent definition may be called for when determining whether carers are eligible for tax credits. Examples of this variance were found in our interviews with stakeholders in the United Kingdom and Spain who reported there not being a single definition for carers and that it differed depending on the context. In Spain, some researchers address the issue of caring from a broader perspective, which considers the care provided to be life sustaining and means that almost all people must receive care throughout their lives at some point. Whereas, a more restrictive definition exists under the Spanish Dependency Act and the degree of dependency is decided upon by each region (or Autonomous Communities), which means that resources are allocated based on these different definitions of level of dependency of the care recipient. In the UK, they note that there are many differing definitions between community care, social care, the NHS, etc. Carers in the United Kingdom are also officially mentioned in pension legislation. In Canada, three federally-legislated tax credits are available for carers, each of which has different eligibility criteria. As of the 2017 tax season, the three credits will be streamlined into one ‘Canada Caregiver Credit’ to improve access to financial support for carers (Government of Canada, 2017).
In some cases, carer measurement tools have been developed that focus on only specific groups of carers. In the United Kingdom (Dementia UK), Australia (Dementia Centre for Research Collaboration), and Ireland (Care Alliance Ireland), for example, measurement tools were developed for carers of people with dementia. Dementia UK surveyed carers who had received services by the Admiral Nurses’ who provide support to families living with dementia, they use these findings to guide the professional development of the Admiral Nurses by targeting those areas where carers did not feel as well supported (Maio, Botsford & Iliffe, 2016). Care Alliance Ireland along with the Alzheimer Society of Ireland pushed to have a National Dementia Strategy published in 2014, which they want to be used to improve supports for those living with dementia and their families (Care Alliance Ireland, 2015). Tools for carers of people with HIV and mental health issues were developed in Canada and Australia, respectively.
Linking data on carers to care recipients could lead to richer indicators
As measuring caregiver outcomes, experience, and costs become more common, countries should consider how caregiver measures can be best linked to data on their recipients of care. There may be privacy or confidentiality issues that must be addressed for the carer and care recipient’s data to be linked. In addition, logistical or administrative issues can challenge linking two different individuals within a survey or a census.
Better linking data between the carer and care recipient could help improve how the caregiving relationship is understood. Until now, patients have largely been organised based on condition, under the assumption that their disease is the unifying factor for providing services or support. However, there is a growing understanding, that segmentation based on condition is not sufficient to design or tailor care (Hostetter & Klein, 2015). Different health systems have begun to develop new ways to segment patients (Hostetter & Klein, 2015). Some health care systems are using segmentation to look for missing patients who do not seek care, while others are segmenting based on the values of patients or based on geography (Hostetter & Klein, 2015). Moreover, cultural or societal factors that differ between countries and within communities can influence how people seek and receive care. Carer’s needs may sometimes be linked by the condition of the person they care for. But at other times, other factors – such as the carer’s age, where they live, or their relationship to the person they care for – will play a larger role in their caregiving experience. Linking patients and their carers will facilitate a better understanding of how both carers and their recipients of care interact with and experience health and care services.
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