Nara Women's University
Rethinking the conflict between prevention andpreparedness: towards a sociological perspective
on coexisting with dementia
メタデータ

言語: Japanese
出版者: アジア・ジェンダー文化学研究センター
公開日: 2023-05-18
キーワード (Ja): 認知症, 備え, 予防
キーワード (En): Dementia, Preparedness, Prevention
作成者: 井口,高志
メールアドレス:所属:

URL

http://hdl.handle.net/10935/5929

アジア・ジェンダー文化学研究【第 7 号】2023

Rethinking the conflict between prevention and preparedness:towards a sociological perspective on coexisting with dementia
Takashi Iguchi*
Abstract
The Japanese government's General Guidelines for Dementia Policy Promotion
implemented in 2019 focuses on dementia prevention. People with dementia and family
caregivers expressed strong concerns on the emphasis on prevention, and the idea of'coexistence' and attitude of 'preparedness' were proposed as alternative values.
This study aimed to conceptualise two ways of dealing with dementia, thatis, 'prevention' and 'preparedness', which are highlighted by the above-mentioned
conflict, and theorises how these two attitudes relate to the larger goal of 'coexistingwith dementia'. Both concepts are similar in terms of attitudes towards a 'negative'
future. In terms of the relationship between individual behaviour and collective-levelgoals, prevention is more appealing to people because the meaning and consequencesof practising it are highly visible. However, prevention has a negative association withcoexisting with dementia because it positions the condition as a future that needs to be
avoided. In contrast, preparedness is closer to the idea of coexistence as it mitigates thenegative connotation of the condition. The issue of preparedness raised by people withdementia is an important challenge to mainstream attitudes.
The conflict between the two concepts can be understood as the confluence of
two historical currents in the understanding of dementia: the neuropathologisation ofdementia from the early 20th century and humanisation of dementia from the late 20th
century. The other historical trend is the 'new dementia' trend, which emphasises thelink between lifestyle-related diseases and dementia. It obscures the semantic content
of dementia prevention and its relationship to preparedness. In light of this situation,
capturing the diversity of prevention practices and understanding preparedness in thecontext of the local practices that can inspire individuals with dementia is an important
empirical research question for the future.

Introduction
The emergence of Covid-19 exacerbated the challenge of coexisting withthreats to our lives and society. In other words, how to deal with negative entities* Associate Professor of Graduate School of Humanities and Sociology, Faculty of Letters, The University ofTokyo

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has become one of society's most important challenges. Although different from
communicable and potentially fatal infectious diseases, dementia is generally perceived
as a major societal and personal problem in an aged society. As the number ofsufferers is projected to increase, we are faced with the conundrum of coexisting withdementia and those who have it. An examination of how living with dementia has been
conceived in our society may provide clues to the question of coexisting with 'negative
entities'.
In 2019, the Japan government's proposed dementia policy, which focusedon preventing dementia, elicited strong concerns from groups of people withdementia(PWD) and family carers' organisations (Japan Dementia Working Group,
2019, Alzheimer’s Association Japan, 2019), This revealed the existence of conflicting
views regarding how best to coexist with dementia. This paper provides a conceptual
overview of the discourse surrounding the dementia policy in Japan in 2019, andaims to lay the groundwork for further empirical research. Specifically, it defines andorganises the conceptual relationship between 'prevention' and 'preparedness' as seenin the critical discourse on the policy. Based on this organisation, the sociologicalimplications of this conflict and sociological research questions for the study ofcoexistence with dementia are presented.
1.The conflict between prevention and coexistence in Japan in 2019
The New Orange Plan (Comprehensive Strategy for Dementia Policy
Promotion) was promulgated in 2015 as part of the National Strategy for Dementia.
It attempted to formulate cross-ministerial dementia policies in Japan among suchagencies as the Ministry of Health, Labour and Welfare, Cabinet Secretariat, Cabinet
Office and National Police Agency. Subsequently, General Guidelines for Dementia
Policy Promotion were issued in 2019. These guidelines stipulate that ‘prevention’initiatives, such as augmenting the number of venues accessible to individuals withdementia, will be advanced based on the principle of ‘coexistence’ 1 (living withdementia/living with individuals with dementia). Of the two keywords, 'coexistence'and 'prevention', the original proposal emphasised prevention along with numericaltargets for policy evaluation (Table 1). This raised concerns among PWD and theirfamilies that it would 'promote prejudice' by implying that dementia can be prevented
and thus 'lead to the expectation that preventing dementia is each individual's
responsibility'1(Alzheimer's Association Japan, 2019).
In response to these discussions, the initial objective of 'reducing the incidence
1 A public long-term care insurance system has been in place in Japanese society since 2000, and its
implementation has led to the development of care practices and services for people with dementia. After
positioning these achievements as ‘coexistence’, prevention was highlighted as a challenge for the future.

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of dementia through prevention' was changed to a reference indicator in the final draft,
and the concept of prevention was emphasised as 'delaying the onset of dementia' or'delaying the progression of dementia when it occurs' (Ministry of Health, Labour andWelfare, 2019, tab.1). As a result of these concerns and feedback, the term 'coexistence'has become more nuanced than prevention. The Japan Dementia Working Group, a
representative group of PWD, proposed the term 'preparedness'2 as an alternative toprevention as well as coexistence, emphasising the need to remove prevention from its
central position in the new policy (Japan Dementia Working Group, 2019).
In the following sections, I explore the following related questions: (1) Given
the historical context in which the current concept of dementia was established,
what is the semantic relationship between prevention and preparedness? (2) Whatis 'coexistence', and how should we think about it in connection to dementia? (3)What is the relationship between prevention and coexistence and preparedness andcoexistence? (4) What is the significance of the attitude of ‘preparedness’ raised by the
PWD group?
Table 1. Comparison of the first and final versions of the 2019 proposal

2 The Japan Dementia Working Group describes ‘preparedness’ in ‘Expectations and Demands Regarding the‘Dementia Basic Bill’ as follows: ‘Just as it is important to be prepared for typhoons and earthquakes even
if it is not possible to prevent them, what is important for dementia is not prevention but the concept of"preparedness" and measures to share a healthier and better life together, whether or not dementia occurs’(Japan Dementia Working Group,2019).

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2.Similarities and differences between prevention and preparedness(1)Prevention and preparedness as contrasting attitudes toward a negative futureFirst, we examine the difference between the concepts of ‘prevention’ and‘preparedness’. Before delving into their distinctions, it is important to note theirsimilarities. Both concepts assume a foreseeable ‘negative event’ (in this context, theonset or progression of dementia) and offer actionable options (Iguchi, 2020).
The emergence of these terms can be attributed to several prevalent social
assumptions regarding dementia. Primarily, there exists a common perceptionof dementia as a persistent ‘negative condition’. Family associations, dementia
organisations, and their collaborators and healthcare professionals have confronted andresisted this perception. Alongside efforts to alter the image of dementia as a ‘negative
condition’, there has been a growing recognition of positive actions that can be taken
regarding dementia. Notably, with the expansion of the scope of medical diagnosis,
an increasing number of individuals are identifying dementia in its ‘early’ stages andreceiving a diagnosis, and the understanding that dementia is a progressive brain
disease is becoming more widespread. These factors have made it possible to identify
symptoms and implement preventative measures (Iguchi, 2020).
Based on these similarities, the differences between the two concepts can beinferred. ‘Prevention’, in the context of medicine and healthcare, refers to intervening in
advance to prevent a certain condition from occurring or worsening. This has become
more possible with the advancement of medical technologies to detect and intervenein certain conditions. By contrast, ‘preparedness’, which emerged after prevention,
has a distinct meaning, referring to ‘advance preparation’, as opposed to resisting the
progression of a disease.
From this perspective, both prevention and preparedness are part of an
ideology that assumes that some undesirable conditions will occur in the future, andthat tries to confront them in some way. Prevention focuses on avoiding such statesto the extent possible, referring especially to practices that work on the body andcognitive abilities. Preparedness, by contrast, attempts to prepare for the possibility ofentering such a state. This logically includes preserving or protecting one's body andcognitive abilities; but preparedness also emphasises things other than the body andmind.
(2) Prevention and preparedness at individual and population levels
Notably, when prevention and preparedness are discussed, particularly in thecontext of policies and social movements, they are addressed as attitudes and actionsof individuals, as well as of groups and collectives. The numerical targets presented

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in prevention policies are a quintessential example. When targeting prevention at the
population level, the emphasis is on the effectiveness of the programme as a whole,beyond the success of individual prevention. For example, the prevalence of dementia
can be used as an outcome measure.
However, in the case of preparedness at the population level, it is challenging
to identify the goal and set common outcome indicators. Fundamentally, the more
manpower and support systems available to an individual, the better. However,these resources are limited. For example, one goal could be to assume the worst-casescenario for the future and prepare as much as possible. This would mean ensuringthat the right to life is guaranteed as a safety net, that resources, such as benefits andservices, are secured, and that social capital is enhanced to prepare for this worst-casescenario.
(3) Why is prevention more easily understood and accepted than preparedness?
It is evident that in the current conceptualisation of prevention andpreparedness at the collective or population level, prevention is more easily visualisedin terms of policy goals and other issues; thus, its outcomes are more easily understood.
Consequently, prevention is more likely to be implemented as an issue that is easy
to tackle. Furthermore, achieving prevention at the collective level makes it easier tovisualise the sum and accumulation of individual prevention practices and actions,which in turn may create a set of unified expectations that individuals are expected
to follow (hence, the fear expressed by PWD that this emphasis will make them
‘responsible’ for dementia).
However, preparedness at the group and societal levels does not necessarily
correspond to the accumulation of preparedness activities by individuals. Given
the diversity and stratification of individual lives, a wide range of things need to beprepared at the individual level. However, at the group level, even though there is a
general need for basic goods, such as social capital and housing, there is not necessarily
agreement on the content of these goods. As the welfare restructuring progresses
and the logic of economic efficiency becomes more important, the expansion of basic
goods becomes harder to set as a goal, or at least has to be justified in relation to otheroutcomes, such as economic efficiency. First, preparedness at the group level may be aprerequisite for the individual to live; that is, the ideals and social recognition of humanand civil rights, and the development of regulatory policies (anti-discrimination laws
and basic laws) that guarantee them.

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3.What is coexistence with dementia/people living with dementia?
(1)Coexistence as a normative concept
How do prevention and preparedness described in Section 2 relate tocoexistence? To clarify the issue of coexistence in relation to dementia, this section
provides an overview of the meaning and usage of the term coexistence in social
sciences and sociology in Japan.
Coexistence is a translation of kyosei in Japanese. When the word kyosei was
first used, its primary meaning was ‘a mutually beneficial relationship that is establishednaturally among organisms in nature’. This concept originated in biology and has
been used as an ideology and metaphor for harmonious states in architectural andregional designs. However, in the social sciences, it has often been used to describe
the relationships between solidarity and community that people consciously andproactively create anew (Miura, 2016).
Furthermore, in Japanese sociology, the concept of coexistence has been widelyused, and has shifted from its initial usage of describing facts to a usage that indicatesnormative goals in the context of the diversification of social members (Daikokuya,2016). In other words, coexistence is a normative term that describes the (good)state of society created by people, and it can be seen as a goal to be achieved. The
dynamic process by which multiple actors and groups reach the goal of coexistence,and conflicts among these actors and groups, are issues that need to be empiricallyexamined (Hanasaki, 2001).
The use of the concept in Japanese social policy started with the agenda ofcoexistence between men and women in the 1980s, shifted to multicultural conviviality
in the 1990s with the increase in the number of foreigners, and has recently become
one of the keywords for the future vision of regional welfare and Japanese society as‘community-based cohesive society’ in relation to the ‘community-based integrated caresystem’ (Takegawa, 2020). The shared connotation of coexistence in this context may
refer to the symmetrical coexistence of various entities from diverse categories.
(2) What are the issues of coexistence in dementia?
Given the above overview of the concept of coexistence, the first challenge
when contemplating dementia is to consider the relationship between individuals
with dementia, the groups and organisations to which they belong, and those without
dementia. What are the practices for living with an increasing number of individuals
with dementia as the population ages, and what kinds of relationships should be
developed to overcome asymmetrical relationships? It is necessary to examine theseissues by introducing and analysing examples of local practices and activities of

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individuals with dementia.
The composition of the coexistence problem surrounding dementia can beviewed differently from the issue of coexistence between groups. It differs in characterfrom the coexistence of ethnic and gender groups, which have relatively unique
attributes and clear boundaries. In the case of dementia, there is coexistence with theindividual’s body. If dementia is progressive, the question becomes how to deal withoneself and one's own body–the stage at which dementia progresses. The phrase ‘livingwith dementia’ or ‘living well with dementia’ (Hayashi, 2017) as a goal may point us in
the direction of such a problem.
(3) Prevention and coexistence
In light of the above, it is clear that the practices of prevention and coexistence
are not necessarily compatible. Prevention seeks to avoid a negative future statethrough precautionary measures and interventions, and often views the group of
PWD as a negative entity to be avoided. Even if prevention is understood as ‘slowing
down the progression of the disease’, the perceived future population may still carryconnotations of individuals to be avoided because of their condition.
However, the possibility of prevention may be a hope for individuals living withdementia. This is because maintaining a state closer to the present provides more time
for individuals to think about the future and to be active. Additionally, as the focus of
prevention shifts in the new dementia paradigm, prevention may come into contact
with coexistence. This is because preventing various diseases, such as cerebrovasculardiseases, may become more important in living with dementia than solely focusing
on preventing neurodegenerative diseases. In this case, prevention is not solely about
delaying the onset of dementia caused by neurodegenerative diseases; rather, it is acollection of actions that may improve the daily lives of PWD.
Even though prevention may play an important role in living with dementia
for an individual, in principle, the act of prevention, or attitudes towards it, do notnecessarily lead to a significant change in how severe dementia is regarded. Rather,
the emphasis is on maintaining the present physical condition or on returning to thephysical condition of the past. This emphasis on prevention maintains the desirabilityof a ‘milder state of dementia’ and maintains the asymmetry of a ‘more severe state’,
which is viewed as more negative than the present state.
However, it is important to consider the motivations behind this desire forprevention. The desire for prevention often stems from the nature of social relationships
with close others in contemporary Japanese society. For example, individuals may
believe that they must prevent themselves from developing dementia in order tocontinue to be primary caregivers for their family members and close relatives as they

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age. They may also be trying to prevent dementia themselves to reduce the burden
on their caregivers. In Japanese society today, when a person suffers from dementia
and requires nursing care, an asymmetrical relationship between the caregiver and thecared-for is often created, and it is assumed that the family will take care of the person.
Under such circumstances, it is not surprising that prevention is seen as an earnest andmodest hope for the coexistence of PWD and their caregivers.
(4) Preparedness and coexistence
As stated in Section 2, there is no distinction between preparedness andprevention in proactively addressing potential negative states in the future. From a
coexistence perspective, what is the principal difference between the evaluation of
preparedness and prevention? First, preparedness can alter the meaning of the futurestate (i.e. the severe state of dementia); in simpler terms, it can mitigate the negativityof the severe state. Notably, in the case of neurodegenerative diseases, which areconsidered irreversible, even if the progression of symptoms is delayed through anemphasis on the individual's physical efforts and prevention, the negativity of thesevere stage that is ultimately reached cannot be alleviated. By making preparations,such as transforming the resources and relationships surrounding the individual, it ispossible to live in a distinct environment from the one previously assumed, even if theindividual reaches the same biomedical state (the severe state).
Second, assuming a severe state of dementia, a person can greatly alter their
way of life and values in the period preceding the onset of the disease. As previously
noted, when comparing preparedness with prevention, individuals tend to exhibit astrong desire for prevention. This desire for prevention can be considered a natural
inclination in contemporary society. In contrast, preparedness, much like prevention,
may originate from anxiety about the future, but it at least prompts a contemplative
attitude towards one's own way of life, by enquiring as to what is essential and themost appropriate way to live, imagining a life with dementia, rather than resisting its
progression.
If the attitude of preparedness is understood in this manner, individuals withdementia, particularly those with severe dementia, can be perceived as active subjects
and groups that can strive to change their attitudes towards those without dementia
and those with mild dementia. If such an attitude prevails in society, the relationships
between individuals with and without dementia, as well as between individuals withmild dementia and those with severe dementia, will become more symmetrical.
(5) What is the importance of the preparedness attitude raised by the PWD group?
When the relationship between prevention and coexistence, as well as the18

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relationship between preparedness and coexistence, is organised in the above way, we
can understand why prevention is criticised, as well as why it persists.
Although the idea of dementia prevention is often criticised for lacking
sufficient evidence3, another type of criticism is more important from the perspectiveof coexistence. It is a critique that challenges the assumption that living in a particularcondition is bad and should be eliminated regardless of whether there is evidence ofpreventive effects. PWD movements sometimes criticise the ideology of prevention withthe expression ‘what you can do thanks to dementia’. This suggests that living withdementia may itself have a unique value that differs from living without dementia. The
idea of prevention denies in advance the possibility that living with dementia could
create new or unique states of value and states with their own diversity and richness.
However, such critiques of dementia prevention, which are closer to eugenic
critiques within the disability discrimination movement, are not as prominent as more
moderate evidence-based critiques. Moreover, even when evidence-based critiques
are made in actual clinical practice, prevention work tends to be accepted by healthprofessionals, patients, and their families. In fact, prevention of ageing, conceptualised
as lifestyle diseases and frailty, is likely to be attempted in moderation. It may be oneof the characteristics of everyday attitudes to dementia and ageing that they settle ata point where both are important, rather than there being a clear opposition between
prevention and preparedness. However, as discussed above, preventive attitudes
and practices are more likely to be sought because they are easier for many people
to accept and less likely to arouse scepticism. The growing expectation for possible
medical intervention in dementia treatment will drive this trend. Therefore, it is easy tofocus on prevention when presenting a general theory of dementia policy.
It is in this context that criticisms of those already diagnosed with dementia
and those who support them are presented. In this context, we need to understand theimportance of listening to PWD. Their actions represent a fundamental challenge to thevague norms associated with ageing, one that seeks to change the way we will live inthe future as well as in the present.

4.The sociological implications and a proposal for a research agenda in the future(1)Sociological implications of the conflict between prevention and preparedness
The conflict between prevention and preparedness identified in this study canbe seen as a phenomenon that inevitably arises from historical trends of how dementia
3 In terms of prevention, several epidemiological studies have been used to develop guidelines for the WHO
and Japanese policies (Livingston et al., 2015, Livingston et al., 2020, Ngandu et al., 2015). However, critics ofprevention view the results of these studies as not providing sufficient evidence to support dementia prevention
efforts (Kinoshita, 2020).

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has been understood. Three historical trends in the developed world have shaped theway dementia is perceived (Figure 1). Put simply, the emergence of conflict in Japanin the 21st century can be understood as arising from the confluence of two trends:
the 'neuropathologisation of dementia'4 that occurred in the early 20th century (Lock,2013), and the 'humanisation of dementia' that emerged after the end of the 20th
century.
Emphasis on prevention at the policy level is closely linked to the developmentof research within the neuropathological paradigm. Neuropathological studies haveshown that neurodegeneration occurs long before dementia onset. Based on thesestudies, it is desirable to intervene medically at an early stage before the appearance ofclinical symptoms. This trend has led to the importance of early detection of dementia,
which in turn has led to the concept of prevention.
In contrast, the discourse on preparedness has emerged as a trend towards thehumanisation of dementia. The practice of dementia care has evolved into a personcentred care approach (Kitwood, 1997), and under its influence, the experiences andsubjectivity of PWD are increasingly valued and respected. Based on these practices,
the concrete image of living well with dementia has emerged. A movement has
also developed to promote the rights of PWD as citizens5. In Japanese society, theJapan Dementia Working Group, the first group of PWD, was established in 2014.
This association has taken the lead in calling for a dementia policy that focuses on
coexistence, rather than prevention.

Fig 1. Historical overlapping of three trends
4 Neuropathologisation refers to the focus on Alzheimer's disease as the cause of dementia. Alzheimer's disease
is a psychiatric concept that originated in Germany in the early 20th century and is a concept that has
neurological changes in the brain at its core. Since then, neuropathological research has received a great dealof funding, particularly in the United States. Research in this field has developed around a hypothesis centred
on a substance in the brain called amyloid- β . Attention is now focused on the development and public
approval of therapeutic drugs based on this hypothesis.
5 This trend has also been influenced by the disability movement and has led to the development of social
movements by people with dementia (Thomas and Milligan, 2018). This movement aims to seek recognitionof the rights of people with dementia as citizens, rather than seeing them as objects of care. This philosophy isalso known as the rights-based approach (Bartlett and O'Connor, 2010).

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（特集）Rethinking the conflict between prevention and preparedness: towards a sociological perspective on coexisting with dementia(2) Future research agenda.
Future research should focus on the phenomena created by the 'new dementia'
trend (Leibing and Schicktanz, 2020). In particular, research on the implications of theconcept of dementia prevention is a key issue.
Most attention has been paid to Alzheimer's disease, a degenerative brain
disorder; however, vascular dementia, which was in the spotlight before the rise of
Alzheimer's research, is now attracting renewed attention. The term 'new dementia'
encompasses several elements 6 but mainly refers to the tendency to emphasise
cerebrovascular disease as one of the main causes of dementia and to intervene
preventively against this cause. On the one hand, this can be seen as a retreat fromthe focus on neuropathology, particularly in relation to Alzheimer's disease, but on theother hand, it overlaps with the idea that the neuropathological paradigm has beencreated in terms of early detection and intervention.
This trend is expected to alter the semantic relationship between prevention
and preparedness. Cerebrovascular diseases are related to an individual's lifestyle andsocial environment. There is a growing belief that curbing the onset of these diseases
will lead to the prevention of dementia. The prevention of dementia will become
inseparable from the prevention of lifestyle diseases such as exercise, improved diet,and improved public health interventions. If this is the case, it may be possible tounderstand that these activities will mean preparing for ageing in general.
This blurs the line between prevention and preparedness in clinicalinterventions. Prevention of cerebrovascular disease is a way to preserve the quality oflife of PWD. Will this trend change the discourse that criticises dementia prevention?
Although there are activities across the country that address dementia prevention7,
will such activities give rise to movements that raise questions about the future ofliving with dementia? Given the political support for prevention in the government andindustry, how do these macro trends relate to prevention practices for individuals in
local communities? These are some questions that researchers should address in the
future.
Another important research agenda is to clarify the meaning of preparedness in
6 Another feature of the 'new dementia' is the expansion of neuropathology. The focus on cranial nerve
degeneration prior to dementia has led to the concept of Mild Cognitive Impairment (MCI), recognised as acondition with a high risk of developing dementia. This trend is, of course, related to the concept of dementia
prevention. It is also linked to public health and social science ideas that focus on individual lifestyles and thesocial relationships that shape them.
7 To date, dementia prevention has been practiced in Japanese society with a variety of meanings. For example,
an analysis of content referring to dementia prevention in newspapers from the 1980s to 2022 shows thatprevention has several meanings, including First, the prevention of Alzheimer's disease, a neurodegenerative
brain disease; second, the prevention of cerebrovascular disease; third, the prevention of various factors
associated with dementia, such as lifestyle diseases and education at an early age. Fourth, the preventive
effect of various services and activities on the market, sometimes justified by medical research. The 'newdementia' trend is likely to accelerate the second and third aspects of dementia prevention.

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the context of local social movements that create this word. For the goal of living withdementia and for PWD, the concept of preparedness (both the actions and attitudes
it indicates) is much more important. The common meaning of this term is simply riskavoidance activity. For example, a search of newspaper articles on 'dementia' and'preparedness', content about property management and adult guardianship revealed
a general trend. It shows that the general trend is to prepare in advance for a futurein which the 'intentions' of PWD have become unclear. However, 'preparedness' inthe discourse on anti-prevention in 2019 has been constructed in local peer support
activities among PWD. This seems to have a different potential from the idea of
preparedness through individual efforts to avoid future risks. Describing the activities of
PWD and their supporters who have developed the word preparedness and clarifying
its meaning in this context will be an important topic for future research. It is also
necessary to reconsider the distance between preparedness and prevention in light ofthese considerations.

Acknowledgements
This research was supported by JSPS KAKENHI, Grant Numbers 17K04128 and
20K02109.

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