Fourth International Seville Conference on Future-Oriented Technology Analysis (FTA)
FTA and Grand Societal Challenges – Shaping and Driving Structural and Systemic Transformations
Seville, 12-13 May 2011
Between expectation and uncertainty:
Futures of diagnostic instruments for Alzheimer’s Disease in our aging society
Yvonne Cuijpers, Harro van Lente, Ellen Moors
Innovation Studies, Copernicus Institute of Sustainable Development
Utrecht University,
Summary
Europe is facing the grand societal challenge of a rapidly aging society and the prevalence of Alzheimer’s disease (AD) as an increasingly important phenomenon. This challenge has lead to research programs to develop more reliable and earlier diagnosis of AD using biomarkers, to enable prevention and personalized treatment. Scientific and clinical effort, as well as public funding is being invested in this type of research. Imaging techniques (MRI, PET), and the analysis of Cerebrospinal Fluid (CSF) are being developed further, with the promise that it will make a more reliable and earlier diagnosis of AD possible. The promises of early diagnostics of AD are predicated on a particular representation of the future. Yet, the mere announcement of early diagnostics of AD has already provoked a range of additional new uncertainties, such as concerning the role of insurance, clinical procedures, the definition of the disease and its patients. Will the improvement of these future instruments indeed lead to the earlier and more reliable diagnosis? What is the value of being diagnosed with AD for a patient, when treatment is lacking? Would it change our view on aging? In this paper we argue that there are more futures for diagnostic instruments for AD in an aging society, not just one; and we argue that TA is taking place within the AD landscape, and not only in TA studies.We will trace the multiple futures, and analyze how they are produced by the interplay of expectations. Methodologically, we follow three steps. First we analyze how the dynamics of promises and the dynamics of uncertainties are conceptually related in the case of AD, how they both guide actions, position actors, provide legitimacy and set agendas. Second, we provide a systematic overview of the current world of Alzheimer’s in the Netherlands, including stakeholders, their interests and the recurrent issues in their interactions, especially concerning the efforts to realize early diagnosis of AD. This overview is based on desk research, site visits in clinics and nursing homes and interviews with researchers and policy makers. Finally, we study the discursive spaces provided (i) by so-called Alzheimer cafes, where persons with dementia and their relatives regularly meet to support each other in group meetings. This analysis is based on interviews, observations during support group meetings and document analysis. We conclude with a mosaic of hopes and fears, expectations and uncertainties and the main issues we encountered in the discursive space of the Alzheimer Café and we reflect on Alzheimer Cafés as a discursive space for informal TA.
1Introduction
Europe is facing the grand societal challenge of a rapidly aging society and the prevalence of Alzheimer’s disease (AD) as an increasingly important phenomenon. This challenge has led to research programs developing diagnostic instruments for AD based on biomarkers, rather than symptoms: the development of imaging techniques (MRI, PET), and the analysis of Cerebrospinal Fluid (CSF). These research programs promise to create conditions for earlier diagnosis and for effective evaluation of novel medication therapies of AD, and to find the causes of AD at an earlier stage of the disease process. On the other hand, the mere announcement of early diagnostics of AD has already provoked a range of uncertainties to be articulated. Will the improvement of these future instruments indeed lead to an earlier and more reliable diagnosis? What is the value of being diagnosed with AD for a patient, when treatment is lacking? Will it contribute to a solution to the societal problem?
In this paper we argue that in order to address such questions it is pertinent to consider the multiplicity of futures for diagnostic instruments for AD in an aging society. The promises of early diagnostics of AD, as we will show, are predicated on a particular representation of the future. Yet, many actors (e.g. patients, informal care givers, clinicians, researchers, industry, insurance companies, funding agencies, nursing homes) have an interest in the diagnosis of AD, and each of them will attach a specific meaning to diagnostic instruments from their own social context. We will trace these futures, analyze how they are produced by the interplay of expectations and uncertainties, with the goal to understand the current situation, in order to improve the knowledge base for our further research, and increase the understanding of this complexity between actors in the Alzheimer Landscape.
Futures are not innocent. While the molecular diagnostic instruments are still ‘in the making’, they are guided by expectations. These expectations not only concern the future functioning of the molecular diagnostic instruments under development, but also, for example, expectations concerning demography and estimations of the number of persons with AD in the near future, strategies to deal with AD, and progress in scientific knowledge about AD.In the sociology of expectations, expectations are defined as ‘real time representations of future technological situations and capabilities’. (Borup, Brown, Konrad, & Van Lente, 2006) Expectations are performative, they ‘do’ something. Through their content, they are able to coordinate action, by allocating roles, creating linkages and obligations between actors and by defining agendas. Expectations can be used by actors to legitimize actions, mobilize funding and attention of other actors. They are used in decision making processes to reduce the uncertainty inherent in technological development(Van Lente, 1993). Futures are loaded with uncertainties as well. Uncertainties can be defined as ‘any deviation from the unachievable ideal of completely deterministic knowledge of the relevant system’(Walker et al., 2003).In our case, uncertainties include the contingencies inherent of technological developments, the technological feasibility, possible unintended consequences, the social desirability of these innovations, the best way of dealing with AD as a society, the future embedding of molecular diagnostic instruments, the usefulness of these instruments, the responses of different stakeholders, the transformation of the context in which they will function, and so on.
With our research interest in the multiplicity of futures we also address the general aim of TA to anticipate potential consequences of new technologies (futures) and feed them back into decision making. While this has evolved as a regular activity of TA practitioners, Rip (Rip, 1986; Rip, 1987) pointed out that in fact all stakeholders assess and anticipate new technologies. Controversies, then can be seen as informal technology assessment. In this paper, we report on such an informal TA of Alzheimer’s Disease.
In our quest to delineate the futures of AD in the Netherlands, we follow three steps: We start with a first account of the promises of early diagnostic instruments for AD as these are voiced by the leading Dutch research consortium on early diagnosis (Leiden Alzheimer Research Nederland).Secondly, we provide a systematic overview of the current world of Alzheimer’s in the Netherlands, including stakeholders, their interests and the recurrent issues in their interactions. Finally, we study the discursive spaces provided by the ‘Alzheimer Cafés’ as a setting in which informal TA takes place. Our findings are based on desk research, site visits in clinics and nursing homes, interviews with researchers and policy makers, observations during support group meetings and document analysis.
2The promise of early diagnosis of Alzheimer’s disease: various views
Years pass from to first subtle, hardly recognizable symptoms of the disease until a full blown dementia. The changes in the brain, such as the formation of amyloïd plaques, can even be detected decades before the first symptoms of AD are manifested (e.g. (Morris & Price, 2001; Schmitt et al., 2000; Schmitt et al., 2000; Troncosco, Martin, Dal Forno, & Kawas, 1996). According to researchers of novel diagnostic tools, an adequate diagnosis at an early stage would be a major breakthrough because it creates the possibility to slow or arrest the degenerative process of dementia, once treatment is available. Currently available symptomatic treatments are also thought to be more effective when administered at an earlier stage of AD. (E.g. (Chetelat & Baron, 2003) An early diagnosis could also reduce the uncertainty of a person’s health status, comfort persons who do not suffer from AD and allows care, guidance, education and support from the start of the disease for persons who will develop AD and their family.
The Dutch research consortium LeARN tries to force a breakthrough from what they describe as a vicious circle of AD that medical disciplines are confronted with. For effective treatment it is necessary to understand the disease. To understand the disease it is necessary to diagnose patients at an early stage of the disease. However, early diagnosis of the disease is only useful when there is also treatment available.(Ent, 2006; Hengel, 2007)
Figure 1 Vicious circle of understanding, diagnosing and treating AD
Through early diagnostics using biomarkers, this research consortium strives to enable a breakthrough in this vicious circle of AD. Biomarkers are that ‘mark’ AD in an individual. This means that the level of this biomarker is related to the development of the disease. This research consortium aims to advance imaging techniques such as MRI and PET and analysis of cerebrospinal fluid (CSF) to identify biomarkers related to AD in vivo (in the body). It promises to enable earlier and more reliable diagnosis of AD, to contribute to drug development by finding leads for drug development, and to enable monitoring of drug response.
Yet, promising developments of early diagnosis with the use of biomarkers do not take place in isolation, but are intertwined with social and cultural processes. The desirability of an early diagnosis of AD can only be understood in relation with the aging of societies, anxieties about autonomy and selfhood, interests of pharmaceutical companies and medical institutions, etcetera (e.g.(Ballenger, 2006)). To get an overview of the actors, issues and interests at stake we made an overview of the current landscape of Alzheimer’s in the Netherlands. This overview is based on desk research, site visits and interviews. The multitudes of actors are clustered in groups (Figure 2). The groups are not mutually exclusive and some actors may belong to more than one group. Table 1 lists the stakeholders, their interests and the most important issues concerning the possibility of an early diagnosis of AD.
Figure 2 The Dutch Alzheimer Landscape
Actor / Groups / Organizations / Interests and issues expressedPatients[1] / AD patients
MCI patients (Mild Cognitive Impairment) / Dealing with memory complaints, loneliness, loss of autonomy and independence
The aging population (baby boomers) / No indication
Alzheimer Nederland (patient and funding organization) / Improved quality of life for demented persons and their environment
Perspective on a better future for the aging population
Education, information and support, lobby and advocacy for interests of AD patients, reducing taboo on AD
Informal caregivers of AD patients[2] / Informal caregivers
Support organizations
Expert center
Volunteer organizations / Well being of person with dementia
Information and education about AD, support in care, administration and organization of support, advice and psychological support for themselves, recognition.
Future improvements in treatment of AD
Media/ general Public[3] / Issues about AD and dementia in Dutch newspapers, magazines and press agencies during from January to June 2010 (in the database LexisNexis) / Debates on payable care, just division of resources, a sustainable health care system, dealing with the aging population
Informing about activities for AD patients and caregivers, books, cultural events, the reorganization of regional health care institutions, research results on risk factors for AD, preventative measures, early diagnosis, possible therapies and new technologies.
Politics and policy
[4] / Ministry of health, welfare and sports / Aging society
Preventative health care for elderly
Increase quality of life of persons with dementia and their relatives.
Care standards
Provide professionals with sufficient instruments to provide good care
Integrated care, centered around the needs of patients
Small scale living for elderly
Case management
National Health Council (De Gezondheidsraad)
Other advisory boards / Using the knowledge of experts to advice the government and parliament
Municipalities / Coordinating integrated care in the region
Implementing the Law for societal support (Wmo)
Regulating agencies[5] / Center for the assessment of the need for care (Centrum Indicatiestelling Zorg) / Independently and objectively determine who has a right to special health care reimbursement from the government (AWBZ care)
Informing local citizens in the procedures to apply for support under the AWBZ and Wmo laws
How to apply for the AWBZ care, and how this is assessed.
The simplification, reorganization and harmonization of the process of need assessment.
Dutch Care Authority (Nederlandse Zorg Autoriteit) / Keep health care payable, accessible and of good quality for everybody
Advice, regulate and inspect behavior of health insurance companies and organizations supplying care.
Stimulate the efficiency of the health care through regulated market mechanisms
Conditions for regulation of markets
Advices and inspection of insurance companies and care providers.
College for health insurance companies (College Voor Zorgverzekeringen) / Guard that care needed by insured persons is provided
Insurance companies[6] / Branche organization (Zorgverzekeraars Nederland)
and approx. 40 insurance companies / Reimbursement of health care costs
Purchase of care
Conditions of insurances
Information about diseases and possible care
Industry and companies[7] / Philips, Organon/Schering Plough/Merck, DSM, BAC. Cyclotron. Virtual Proteins, DAZ. …. / New markets due to aging society
Knowledge intensive medical innovations
Products and services for the elderly
Developments, products and services
E.g. food additives, anti-dementia medicine, brain imaging, innovation in care and supplying services in these fields.
Research[8] / Researchers
Universities
R&D in industry
Research funding organizations / Scientific research and research findings
Contributing to knowledge on AD
Translating research findings to clinical practice or marketable products
E.g. preventative measures, improved care, early diagnosis, possible treatment, impact of diagnosis of AD
Research on early diagnostics using biomarkers
LeARN
CTMM (Center for translational molecular medicine, which LeARN is part of) / Develop instruments to make an earlier and more reliable diagnosis of AD possible during life
Create conditions for an effective evaluation of new therapies for AD patients.
Molecular diagnostic tests for early diagnosis
Developing new therapies
Molecular imaging ( PET, MRI 7 Tesla, CSF) using biomarkers
Disease mechanisms involving amyloid beta and glutamate
Differentiate disease processes per individual for suitable therapy and more exact prognosis.
Coordination of research
Conduct translational R&D
Become leading in Molecular Diagnosis and Molecular Imaging technologies.
Health care (cure and care)[9] / specialized Alzheimer centers, memory clinics, case managers, regional networks on dementia, nursing homes, adjusted living facilities, home care organizations, elderly centers, volunteer organizations , general practitioners, national association of general practitioners, mental health organization, academic hospitals, general hospitals, medical specialists, nurses, professional care takers, paramedics. / Recognition of dementia or problems in daily living linked to dementia.
Coordinating and/or conducting diagnosis
Providing the care, therapy or treatment, guidance, information and advice
Consults with patients
Consultations of other medical or care professionals
Quality Institute for health care (CBO) / Improvement of the quality of care and the organization of care , guideline development (on diagnosis of dementia)
Table 1 Systematic overview of the actors, interests and issues in the Dutch Alzheimer Landscape
The overview of the Dutch AD landscape shows that the different stakeholders approach the AD and the eventual early diagnosis of AD from their own angle, and illustrates the multitude of interests and issues are at stake, as well as the complexity and richness of the AD landscape. What it does not show is how futures, interests and issues are related and how they matter for the involved actors. To gain more precise knowledge on how expectations and uncertainty shape hopeful or frightening futures, we visited and studied a series of DutchAlzheimer Cafés (ACs). In such a ‘discursive space’ different stakeholders meet and articulate expectations and uncertainties, and share their hopes, dreams and fears on current and future developments.
3The Alzheimer Café case
3.1Background of the Alzheimer Café
ACs are monthly informal meetings for persons with dementia, their partners, family members, caregivers and other interested persons. They provide a space and time for the visitors to exchange ideas, information and experiences on an informal basis. The first AC started in 1997, and it has grown to be a widespread phenomenon(Blom & Miesen, 2000). Currently there are over 180 ACs across the Netherlands and their number is still growing. Also in other countries, such as the UK, the AC example is being followed (Halley, 2005).
Figure 1 The number of ACs in the Netherlands 1997-2009 (Crombach & Nauta, April 2010)
The first AC was initiated by the psychogerontologist Bère Miesen. He noticed that persons with dementia and their family found it hard to speak about the disease. A taboo rested on the subject, not just within society, but even between partners, and within families. This experience was shared by other professionals as well. Bère Miesen thought it would be helpful to provide a meeting place with a cosy and laid-back atmosphere where persons with dementia and families could meet in order to exchange experiences and share their grief. This led to the set up of the first AC. During the following Cafés, the number of visitors rose steadily. Professionals from across the Netherlands were interested in the initiative and after publicity on national television, through the tv series ‘living with dementia’ the ACs became well known.