Publications Literature review: Alzheimer’s disease policies in OECD countries
Guillette, Maxime; Lanneville, David; Couturier, Yves; Tannouche Bennanni, Selma; Thiam, Yacine; Belzile, Louise; Vedel, Isabelle; Bergman, Howard
Recherche en organisation des services sur l'Alzheimer (ROSA)
Alzheimer's disease (AD) and other major neuro-cognitive disorders (NCDs) pose significant challenges as the number of people living with Alzheimer's disease is rapidly increasing. Alzheimer's disease is incurable and has biopsychosocial implications for those affected. This obviously raises a multitude of issues for persons with AD and their families, but from a societal point of view, these issues require developing collective solutions by transforming communities, developing better organizational practices and adopting renewed public policies. It is in this spirit that since the early 2000s some governments have adopted action plans for these diseases. We conducted a literature review with the objective of understanding the social dynamics that led to the adoption of public policies, identifying their main areas of action, and exploring how these measures are actually implemented. This report presents the results in four main sections: Section 1. The literature review strategy. We used three types of documentary data: 1) 57 scientific articles that focused on the process of recognizing the social problem of AD and NCDs, the political agenda, content, implementation and effects; 2) two reports published by international organizations; and 3) action plans for these diseases which have been adopted by eight of the ten Canadian provinces. We analyzed these documents using a grid based on a public policy analysis model, and the main areas of public policy as identified by the World Health Organization (WHO). Section 2. How ad and NCD’s came to appear on the political agenda, their emergence as a social problem and the adoption of dedicated public policies. From 1900 to 1970, AD and NCDs were mainly perceived as a state of madness associated with old age. The boom in medical research in this area in the following decades changed the social representations and contributed to the recognition of the pathological nature. The dissociation of normal aging from cognitive disorders has contributed to the development of associative movements along with increased media attention. Although AD and NCDs emerged as a social problem in the second half of the 20th century, the importance of the psychosocial needs of those living with their impact was diminished in public policy and in the care provided. However, recognition of these needs has grown since the early 2000s, and many governments have adopted action plans. Several scientific articles propose that the participation of people with Alzheimer's disease, their families and the organizations that make their voices heard in the policy making process, is a particularly favourable condition for the recognition of their needs and their expertise. Governments must, however, develop mechanisms that effectively support the ability of these actors to act, rather than simply delegating responsibilities to them. Section 3. Actions plans – comparison and identification of predominant trends. In a report by the WHO, seven main areas were identified : 1)dementia as a public health priority; 2) dementia awareness and friendliness; 3)dementia risk reduction; 4) dementia diagnosis, treatment, care and support; 5) support for dementia carers; 6) information systems for dementia; and 7) dementia research and innovation (World Health Organization, 2017). These areas transcend action plans for AD and other major NCDs, and are thus broadly convergent, although WHO recommends that governments operationalize them in concrete measures adapted to their political, sociosanitary, population and territorial realities. We observed that measures to improve early phases of the care and service trajectory, such as improved diagnosis, are the focus of the action plans. Improved diagnosis is usually put in place too late, constituting a major obstacle to the implementation of follow-up adapted for people living with the repercussions of these diseases. This explains why diagnostic measures are almost universally promoted in public policies, under various conceptual arrangements. However, several action plans have not given the same importance to the development of care and services, following diagnosis, and this can generate feelings of helplessness. A holistic approach to the needs of people living with AD and NCDs, requires public policies to reflect the same intensity in all of the main areas. This can be achieved using the concepts of dementia capable, dementia friendly and dementia positive. These shared concepts are useful in functional components, in transforming the physical and social environment, and in recognizing that people with Alzheimer's disease deserve to live a fulfilling life. This approach is key for people living with these diseases, and their loved ones, to fully exercise their remaining abilities and live with dignity. Section 4. Policy implementation process. The first characteristic of effective implementation of an action plan is the adequate investment of financial resources. The second determinant is the development of a national steering committee, which serves to coordinate numerous departments and partners in various levels of government involved in the implementation of change. The committee helps plan activities implemented, address issues encountered, and monitor and follow up on changes made. The third determinant is the development of a strategy to support change. Several governments have developed projects that experiment with change in practices. Projects that stand out are identified and the conditions of change and implementation are understood, with a view to scaling up. Based on learnings from the literature review, governments need to consider four major aspects when engaging in this type of strategy: 1) mobilizing local actors is crucial to rooting change in local realities; 2) change needs to be flagged and actors must be supported to fully achieve the fundamental objectives of public policy; 3)experimental projects must be rigorously evaluated to draw meaningful learning from them; and 4) large-scale dissemination of innovative practices must mobilize the same type of implementation strategy and maintain the importance of the conceptual foundations on which the experimental projects were based. The policy implementation process must be a priority for governments since the real action to effectively improve the quality of life of people living with the repercussions of AD and NCDs can be realized only by the effective implementation of the measures proposed in the action plans.