The invisible people responsible: relatives in reporting on dementia

Dementia is currently one of the biggest challenges – both in the healthcare system and for society as a whole, at a national and global level. There are currently around 1.6 million active cases of dementia diagnosed in Germany, current data shows a trend of around 300,000 new cases per year, and by 2050 up to 2.8 million people will be living with dementia in Germany (German Alzheimer Society e. V. , 2020; Georges et al., 2020). Accordingly, there are numerous actors who take on various tasks in the context of dementia. In addition to scientists and research institutions that primarily deal with preventive measures (research into causes) and the development of (drug) therapies, political institutions work on structural conditions (legal framework for care, provision of specialized care facilities). Above all, relatives and (trained and untrained) nursing and care staff play an important role in the care of people with dementia.

>> Relatives in particular are challenged in many ways. They provide extensive support on different levels, both instrumental (especially physical care, but also organizing/coordinating medical visits) as well as emotional, informational and decision-related (overview in Reifegerste, 2019, p. 75 ff.). One of the most difficult tasks, in addition to physical care, are decisions that have to be made on behalf of people with dementia when they are no longer able to give consent and/or make decisions due to cognitive limitations (legally) (decision-related support). In order to be able to take on this task adequately, they must first seek out information and conduct consultations (informational support). In addition, they must accompany patients to medical examinations and act as an intermediary between doctor and patient (informational, instrumental and decision-related support, for the role of relatives in care see Reifegerste, 2020). What is striking here is the gender ratio in the nursing care situation: around two thirds of all caring relatives are female, and they usually care for life partners and their own parents (for an overview see Räker et al., 2020).
Relatives often experience high psychological stress due to care and due to the personality changes they experience in a close person (Alltag et al., 2019; Bohnet-Joschko & Bidenko, 2021). Relatives who do not provide direct care are also psychologically burdened by the behavioral and psychological symptoms of dementia.
Nursing and care workers in the
Media coverage
Although the relatives of people with dementia are key figures in care and support (Wolff & Roter, 2011), they are hardly represented in public or in public debates. They are literally “hidden in plain sight,” hidden in plain sight (Wolff, 2008). It is therefore necessary to take their representation in media reporting into account.
While doctors and large companies in the healthcare industry (e.g. pharmaceutical industry, health insurance companies) organize themselves and have public representatives, relatives of people with dementia are often on their own. They are a heterogeneous group from all areas of society; they lack a lobby that advocates for their needs (e.g. Groll, 2019; Weiß & Wawatschek, 2021).
One way to become publicly visible and communicate your interests, even without an official, structured and influential organization, is through media reporting. Relatives can use the (journalistic) mass media (print, television, radio - including online editions) to inform about their concerns and content and to communicate their opinions and existing grievances to the audience (classic tasks of journalistic mass media, e.g. Federal Agency for Civic Education , 2016). A deficiency that has existed for years and is reported again and again is, as already mentioned, the nursing care situation (e.g. Köster-Steinebach, 2018; Schulte et al., 2018) for patients (care shortage), especially against the background of care from relatives. The present study aims to investigate to what extent the latter are actually taken into account in media reporting.
Because what is portrayed in media coverage can influence perceptions, attitudes and (care and health) behavior (Collinson et al., 2015; Cotten & Gupta, 2004). Especially before people are acutely affected by an illness - directly as patients or indirectly as relatives - they often absorb health-relevant information casually, i.e. they do not actively search for information about each clinical picture (Longo, 2005; Niederdeppe et al., 2007 ; Soong et al., 2020). Due to the good access and the very good availability (regardless of time and location) in everyday life, especially due to digitalization, classic mass media such as daily and weekly newspapers play a central role here. Existing studies on information seeking in dementia indicate that media reporting has an influence on the formation of opinions and attitudes in the context of dementia, especially before one has to actively deal with the disease (Hirakawa et al., 2011; Killen et al., 2016; Thomas et al., 2002; Vaingankar et al., 2013). This means that people can already absorb information and form an attitude; in the event of illness, they will initially have this information as a basis for decision-making. They are therefore the basis for decisions that must be made acutely in the event of illness, even before time can be spent searching for further information. In addition, under certain circumstances, you can even prevent a further search for information if the current level of information is perceived as sufficient and the additional effort for further research is assessed as too high or not profitable (information value (e.g. Sharot & Sunstein, 2020)). becomes. It is therefore important to examine media coverage of dementia in more detail.
There are various communication science approaches to analyze how content is prepared in media reporting. Gerhards and Schäfer (2011) describe an approach that describes the actors involved as standing, positioning, framing. Gerhards and Schäfer assume a three-stage process that actors must go through in order to be able to pass on their own information in media reporting. First of all, actors must be able to appear in media coverage, i.e. be taken into account by journalists (standing). Once this hurdle has been overcome, the actors considered must comment on the topic being discussed (e.g. dementia or care in the context of dementia) by taking a stand (positioning). If the positioning is also successfully adopted by the journalists, in the final step the journalistic framing of the content becomes relevant, the so-called framing.
The present study focuses on the first and central challenge in this process, i.e. standing or visibility. Which actors manage to appear in media reporting at all and thus the public visibility of the group or institution represented (e.g. people with dementia, relatives, doctors, nurses, but also politicians and research institutions ) to increase? It is not yet relevant for this study how an actor expresses himself or is portrayed or whether the appearance takes place consciously (intentionally, classic standing) or without intention (pure visibility). Figure 1 shows the modified concept; a more detailed description of the entire concept can be found in Daube & Ruhrmann (2021).
The following research question (FF) is posed:
FF1: Which actors are present in media reporting on dementia?
In order to investigate whether the actual gender difference in care (women provide care significantly more often than men) is also reflected in the reporting, it is important to record which relatives are taken into account as individuals in the media reporting:
FF2: Which relatives are visible in media coverage, taking gender and degree of relationship into account?
methodic procedure
In order to investigate the research questions, a quantitative content analysis of dementia-related media coverage in German-language newspapers and their online editions was carried out. Articles from January 2017 to December 2019 were analyzed to get an impression of current reporting. The sample included print and online editions of the highest-circulation German daily and weekly newspapers (ZEIT, ZEIT Online, BILD, Bild.de, Frankfurter Allgemeine Zeitung, FAZ.net) in order to obtain a comprehensive picture of the quality and tabloid press (ivw , 2019a, 2019b). In addition, the aim was to achieve a balanced political orientation of the newspapers and their online editions within the sample.
The articles were collected via two databases (LexisNexis, FAZ Archive) using a uniform search string (*demen* OR *alzheim*). This search produced a total of 6,323 results. The results were then screened and adjusted according to the exclusion criteria (1). Articles that were published twice both online and in print editions were also excluded from the sample (nDouble = 25). N = 309 articles remained in the final sample (nPrint = 167, nOnline = 142).
Coding took place at article level. In addition to formal categories (e.g. publication date, department), the specific form of dementia was coded as the main topic, as well as secondary topics of the articles (e.g. diagnosis, therapy, legal requirements) and the actors involved. All actors appearing were coded taking into account their type of appearance (as an individual, group or institution). In order to be able to record all the actors involved in a differentiated manner, each individual expression was coded in binary form (0 does not occur, 1 occurs).
The contributions were coded by a total of three coders after the codebook had been tested in advance and all coders had undergone training including discussion of open questions. The intercoder reliability was calculated for all relevant categories using Krippendorff's alpha (Krippendorff, 2011) and was rα > 0.8, which corresponds to a good and interpretable reliability level (Krippendorff, 2004).
Actors in media reporting (research question 1)
In most contributions, actors appeared as individuals (e.g. daughter, father, carer) and therefore as individuals (n = 253,
81.9% of all contributions), followed by the mention of institutional facilities (e.g. health insurance, politics, research institute; n = 200, 64.7%). The less specific mention of actors as a group (parents, siblings, doctors) was rarer at 39.8% (n = 123). Below we first look at the people who appear, followed by institutions (see Fig. 2).

persons
The 309 articles feature people with dementia (n = 154,
49.8% of all articles) were mentioned most frequently, followed by experts from the health sector (n = 126, 40.8%). Relatives (n = 102, 33.0%) are in third place, followed by treating doctors who were not explicitly named as experts
(n = 67, 21.7%). Professional nursing staff (n = 51, 16.5%) are mentioned less frequently, but friends (n = 21, 6.8%) of patients hardly play a role in the reporting.

Institutional facilities
Institutions were mentioned in a total of 200 articles (64.7% of all articles), within these mentions scientific institutions (n = 105, 52.5% of the 200 articles) are the most popular, political institutions (n = 47, 23.5%) and foundations/ Associations/interest groups (n = 46, 23.0%) appear similarly frequently. Health insurance companies (n = 23, 11.5%) and pharmaceutical companies (n = 7, 3.5%) make up the smallest proportion of institutional mentions.
Since foundations/associations/interest groups could also explicitly represent relatives, a detailed analysis was subsequently carried out for these actors. A total of 70 mentions were identified in the 46 articles that listed at least one relevant actor in this area. They were categorized inductively: Alzheimer-specific clubs and foundations have the largest share (n = 19, 27.1% of all relevant mentions), followed by football clubs and associations
(n = 18, 25.7%). This can be explained by the intensive press coverage during the study period about a prominent person with dementia from football. Other clubs also have a visible share, which – similar to football clubs – have no direct connection to health and were not specified in more detail due to the great diversity (n = 13, 18.6%). There were also rare mentions of representatives from the professional nursing sector (n = 4, 5.7%).
Institutions that explicitly act as representatives of relatives were not mentioned.
Relatives in media reporting
(Research question 2)
The visibility of relatives in the care of people with dementia is described in detail below. First, the general degree of relatedness of the carers is described (Fig. 3).
In the 102 articles in which relatives are generally mentioned, children of people with dementia (n = 59, 57.8% of all articles with relatives) were most often represented as carers, followed by partners (n = 43, 42.2% ). Caring parents (n = 11, 10.8%) were rarely represented, siblings and grandchildren appeared less frequently (n = 9, 8.8% each).
In order to sensitively capture the gender difference of caring relatives in media reporting, only the relatives appearing as individuals are analyzed here (n = 87 articles). The results are shown in Table 1. Daughters and partners are represented in around a third of all contributions with individual relatives mentioned and thus make up the largest share, while sons and partners also appear in around a fifth of the relevant contributions. If one compares the frequencies, female relatives (n = 65) are represented more frequently than male relatives (n = 43) within the respective degree of relationship, in a relative ratio of 60 to 40.
Conclusion and discussion
The media coverage of actors in dementia does not seem to be balanced today, even if there has been a change in the last 30 years (cf. Clarke, 2006). Today, patients are represented more frequently,
Deaf people are rare and are not represented at all by official representatives and advocates. This shows the lack of an organized (visible) relatives lobby that was already described at the beginning. In the future, these representations in particular can strive for a targeted position in reporting in order to increase their level of awareness - many people have so far little or no use of the services offered by relevant associations (advice services, information hotlines) (e.g. Bieber et al., 2018 ; Reichert et al., 2016).
This underrepresented representation also seems problematic, since in fact a large amount of care responsibility (informational, instrumental and decision-related) falls on the relatives, which in the current nursing shortage could not be completely cushioned by professional (external) care. However, it is less visible in public (due to missing or distorted representations), which means that the awareness of the problem in society as a whole is insufficiently heightened. Of the 4.1 million people in need of care in Germany, four fifths (3.3 million) are cared for at home, 2.2 million by relatives alone (Federal Statistical Office, 2020). In the reporting, relatives (both supportive and non-supportive) are only visible in around a third of all articles; professional nursing staff are mentioned much less frequently. This means that the main pillars in the care of people with dementia are hardly mentioned in the reporting. Experts appear more frequently, which could also be explained by a more medically focused reporting (less care-oriented), which would have to be analyzed in more detail in further studies.
When looking at the relatives in a differentiated manner, it is noticeable that the gender ratio among the relatives shown is close to the real values: while the ratio of caring relatives is around 62% female and 38% male (Räker et al., 2020; other studies show slightly higher proportions female relative), this also applies to reporting. So when relatives are represented, it is quite balanced and close to the real values, at least not significantly distorted. The same applies to family relationships; partners and children of people with dementia are most frequently represented here, which also corresponds to real values.
Limitations must also be discussed as part of the study. In this study, a simplified concept of visibility based on the standing concept was used, as it was assumed that it makes no difference to recipients whether an actor appears in the reporting with intention (standing) or without intention, The actors are equally visible in both cases. It is often not immediately clear to the recipient whether a person appears intentionally or whether a journalist has included them in the report (e.g. in a narrative thread). This was intended to provide an impression of the entire current situation, while pure standing would have offered a greatly reduced insight in which relatives would have been almost no longer represented at all. In addition, no distinction was made during coding between caring relatives and experiencing relatives; this could also be examined differently in future studies.
Implications for practice
The care situation in Germany is tense; many relatives are overwhelmed by the challenges of dealing with and caring for people with dementia. The analysis of reporting is part of the problem analysis: people absorb information from media reporting, and distorted representations are also adopted. False representations can be counteracted through additional education and the visibility of relatives in the public eye (also through measures taken by associations to create a standing). Strategic communication measures (campaigns) based on the findings could address the problem and provide targeted information. <<