CHAPTER 3 <strong>Dementia</strong> policy and plans, legislation and ethical ISSUES
<strong>Dementia</strong>: A public health priority > CHAPTER 3 > DEMENTIA POLICY AND PLANS, LEGISLATIONS AND ETHICAL ISSUES Given the huge burden of dementia on people with dementia and their caregivers, the challenges facing governments worldwide are substantial. The last decade has seen a growing recognition of the scale of the problem and the need for action. Some countries have developed dementia strategies, policies, plans or guidelines. Common elements include: the need for a coordinated multisectoral approach; the need to provide accessible, affordable and good quality health and social care and services that meet the needs and expectations of people with dementia and their families; and the importance of ethical, social, legal and financial protection. For LMIC countries, there is the opportunity not to repeat the mistakes of high-income countries that have become over-dependent on costly institutional care. This chapter gives an overview of some national responses to dementia. It includes a brief report of countries with formal plans and other countries that have taken significant steps towards addressing many of the aspects relating to a public health approach to dementia. The content of dementia policies, plan and strategies, and the level of detail differ from country to country. However, each provides information that can be shared and lessons learned. As WHO’s Director-General, Dr Chan, has stated, “As health systems are highly context-specific, there is no single set of best practices that can be put forward as a model for improved performance. But health systems that function well have certain shared characteristics” (120). This overview provides the basis for a description of key aspects when developing national dementia policies, plans or strategies. The chapter also reviews social and financial support systems and legislative structures, highlighting the need for promotion of human rights and protection from abuse and loss of freedoms when capacity and independence become compromised. Finally, the chapter highlights the need for ethical decision-making at every level of response to dementia, including planning, service provision and day-by-day support for people with dementia and their families. <strong>Dementia</strong> policies, plans and strategies National and subnational dementia policies and plans Countries use diverse approaches to improve the quality of life of people with dementia and their caregivers. Some have launched policies, others plans, strategies or frameworks. There is considerable variability in how countries use these terms. The present report uses the term “policy and / or plan” for any government policy document, plan or strategy in which a framework for action is articulated. However, when referencing to a particular official document from a particular country, the exact terminology used in the document is retained. For example, England has a strategy “Living well with dementia: A National <strong>Dementia</strong> Strategy” (121). Table 3.1 provides a brief overview of the policies / plans / strategies – including the objective, key areas for action, and the time frame for implementation of the plan. For further details, please refer to the source documents. In addition, several other countries – such as China, Czech Republic, India, Malta, Northern Ireland and the USA – are currently developing national approaches to respond to the impact of dementia. However, these have not yet been finalized or implemented (137, 138). Other countries in Europe have identified dementia as a priority and have initiated steps towards the development of a national dementia policy or plan – such as Belgium, Cyprus, Finland, Luxembourg, Portugal and Switzerland. Sweden in 1992 developed a social policy on dementia arguing for a “normalization process” – i.e. even if you have dementia, you should live a normal life, similar to that of all citizens in the community (139) – marking a radical change over previous theories. In 2010 Sweden also presented specified national guidelines for dementia care (140). Germany does not have a national dementia plan but the issue of dementia is considered a priority and addressed through various Ministries (Health, Family, Seniors, Research, Work and Social Affairs) (138). In some countries, state or regional policies have been or are being developed because the country takes a decentralized approach to health and social care – as in Australia, Canada, Switzerland and the USA. CIvil society initiatives ADI, an international federation of Alzheimer associations around the world, released the Kyoto Declaration in 2004 (141) providing minimum recommendations for dementia care based on overall recommendations from WHO’s World health report 2001 which focused on mental health (142). Recognizing that countries are at different levels of resource development, it proposes a feasible, pragmatic series of objectives and actions for health systems at all levels of development. It defines responses to each of the 10 actions at three levels of attainment: for countries with low, medium and high levels of resources (Box 3.1). In 2006 Alzheimer Europe adopted a declaration on the political priorities of the European Alzheimer Movement (143). The Paris Declaration calls on European national policy-makers to give Alzheimer’s disease and other forms of dementia the political priority they deserve. The declaration covers public health, research, health (medical) care, social support, and legal and ethical priorities. In many of the countries described in Table 3.1, Alzheimer associations have been key partners or stakeholders in the development and / or implementation of national or subnational policies / plans / strategies. 34
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