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Stigma, discrimination and agency: Diagnostic disclosure as an everyday practice shaping social citizenship
Journal of Aging Studies 44 (2018) 45–51
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Journal of Aging Studies journal homepage: www.elsevier.com/locate/jaging
Stigma, discrimination and agency: Diagnostic disclosure as an everyday practice shaping social citizenship☆
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Deborah O'Connora, , Jim Mannb,1, Elaine Wiersmac a
School of Social Work, University of British Columbia, 2080 West Mall, Vancouver, BC V6T 1Z2, Canada Dementia Advocate, Vancouver, BC, Canada c Centre for Education and Research on Aging & Health, Lakehead University, Thunder Bay, Ontario, Canada b
A R T I C L E I N F O
A B S T R A C T
Keywords: Stigma Discrimination Diagnostic disclosure Citizenship Dementia
The importance of stigma in shaping the experiences of people living with dementia and challenging their social citizenship emerges repeatedly as a powerful and negative force. In a recent participatory action research (PAR) study focused on understanding what people with dementia need to know to live well, this link between stigma, discrimination and social citizenship emerged once again. A group of people living with dementia (n = 8) met monthly for 16 months to discuss their experiences and advise on the curriculum of a proposed self-management program. From the first introduction, stigma was identified as a defining feature of the experience of living well with dementia. This paper analyses this group's talk around stigma and discrimination, drawing attention to the critical role that diagnostic disclosure has in both positioning people with dementia in a stigmatizing way and, also, acting as a strategy of resistance that facilitates full social citizenship.
Introduction There is no question that a diagnosis of dementia–or major neurocognitive disorder as it is now known in the DSM 5–will represent a major life transition. However, it is also important to consider the extent to which difficulties and adjustments caused by the neuropathology are compounded by societal responses to the person with the diagnosis. Specifically, a growing body of research recognizes that at least some of the challenges faced by people with dementia are a result of the way they are treated within their broader socio-relational contexts (O'Connor et al., 2007). When this broader lens is applied to understanding the dementia experience, stigma as a dominating feature of the experience is highlighted (Batsch & Mittelman, 2012; Milne, 2010; Swaffer, 2014). For example, Katsuno (2005) found that for people living with early onset dementia, subjective life satisfaction was mired not because of the functional declines associated with the dementia, but because of the stigma they encountered as a result of their diagnosis. These findings are, arguably, unsurprising: the dementia experience takes place within the context of an ageist and ableist society, and mental health issues–compared to physical issues–engender particularly strong fear. Goffman (1963) defines stigma as a sign or mark that designates the possessor as “spoiled” and therefore as less valued than “normal”
people; it is “deeply discrediting” and reduces the bearer "from a whole and usual person to a tainted, discounted one" (p. 3). Benbow and Jolley (2012) extend this description to suggest that stigma includes three aspects: stereotypes (collective judgments about groups of people), prejudice (emotional reactions to a stereotyped person), and discrimination (behaviors that are associated with prejudice, including avoidance, coercion, and segregation). Through processes of labeling, stereotyping, separation, status loss, and discrimination, stigma results in creating an ‘us and them’ mentality that results in “othering” and exclusion of one group of people by another more powerful group (Link & Phelan, 2001, p. 367). Within the context of dementia, stigma labels people with dementia by their diagnosis, with negative stereotypes of a loss of self and capabilities through the use of metaphors such as “the walking dead,” “zombies” or “empty shells” (Behuniak, 2011; Zimmermann, 2017). At a societal level dementia is portrayed as “a monstrous force that we must fight” (Zeilig, 2014, p. 265). Individual behaviors and actions then become interpreted through these negative stereotypes. Stigma can be externally imposed by others, but importantly, it can also be internalized, with the person feeling a sense of shame or being “less than” (Burgener, Buckwalter, Perkhounkova, & Liu, 2015; Burgener, Buckwalter, Perkhounkova, Liu, Riley, Einhorn, Fitzsimmons, HahnSwanson, 2015; Burgener & Berger, 2008; Swaffer, 2014). Love (2016)
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This study was funded by the Canadian Institutes of Health Research, Knowledge to Action Grant KAL-262592. Corresponding author. E-mail addresses: [email protected] (D. O'Connor), [email protected] (J. Mann), [email protected] (E. Wiersma). 1 Person with Dementia. ⁎
https://doi.org/10.1016/j.jaging.2018.01.010 Received 4 October 2017; Received in revised form 5 January 2018; Accepted 7 January 2018 Available online 09 February 2018 0890-4065/ © 2018 Elsevier Inc. All rights reserved.
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referenced this as the “Pygmalion effect” wherein people with dementia may voluntarily begin to limit themselves as they respond to being treated with less respect and as if they were less competent. As Mitchell, Dupuis, and Kontos (2013) wrote:
Only one study was found that explicitly examined the decision to disclose information about diagnosis to others which included the perspective of those with dementia. Hellström and Torres (2013) interviewed 20 couples to better understand what couples living with dementia want to know and tell about the disease. While most wanted to know at least something about the diagnosis, there was more variability amongst the couples in relation to how much they wanted to tell others about the diagnosis. Often decisions to withhold information were based on the preferences of the person with dementia and could cause difficulties for the care partner. While this study recognizes some link between reluctance to tell others and stigma it does not explore this connection. The purpose of this article is to extend understanding around the diagnostic disclosure process for people with dementia, considering it in relation to stigma, discrimination and social citizenship. Grounded in the experiences of people with dementia, this paper explores the importance of disclosure to others as a day-to-day practice that both facilitates the experience of discrimination and also offers a strategy for naming and resisting stigma.
Once diagnosed with dementia, persons and their feelings, actions, and expressions become symptoms within a problematized field of possibility. If persons with dementia express feeling healthy and well, they are judged as being in denial. If they are having trouble remembering details but fill in the gaps to save face, they are said to be confabulating. If they get angry with the way in which health care workers are providing care, then they are labeled as aggressive and may end up being restrained and isolated (p. 4). As a counterpoint to the focus on stigma, growing attention is being paid to the retention of social citizenship within the context of dementia (Bartlett & O'Connor, 2007; O'Connor & Nedlund, 2016). Specifically, stigma challenges the rights of each person with dementia to be accorded and treated as an active agent–or citizen–with rights, history and competencies. A social citizenship lens draws attention to how relationships and practices respond to the entitlement of every person with dementia to experience freedom from discrimination, and to have opportunities to grow and participate in life to the fullest extent possible (Bartlett & O'Connor, 2010). This lens recognizes that social citizenship is both upheld, and challenged, through everyday relational practices. One such everyday practice revolves around the diagnosis and disclosure of dementia. Over the past decade, there has been growing focus on the importance of earlier diagnosis, and research has examined how–or if–the person with dementia should be told. It is now relatively uncontroversial that, despite continued physician reluctance to disclose (Bamford et al., 2004; Milby, Murphy, & Winthrop, 2017), earlier diagnosis is beneficial to both the person with dementia and his or her family in helping them prepare for the condition (Derksen, VernooijDassen, Gillissen, Rikkert & Scheltens, 2006; Prince, Bryce, & Ferri, 2011). Moreover, research suggests that people with the diagnosis generally want to be told the diagnosis (Mitchell, McCollum, & Monaghan, 2013; Waldemar et al., 2007) even though the receipt of the news can be viewed as a traumatic upheaval (Aminzadeh, Byszewski, Molnar, & Eisner, 2007; Milby et al., 2017). To date, research examining diagnostic disclosure has largely been one-way–from the professional to the person with dementia. But what happens with the diagnosis once received? Little research has explored how diagnostic disclosure is used in the day-to-day lives of those living with dementia. In other words, how do people with dementia choose to disclose their diagnosis to others as they move through the dementia experience? The limited work that has examined this issue suggests that at least for some, there may be a tendency to conceal the diagnosis related to fear or experiences of stigma (Hellström & Torres, 2013). For example, Werner and Heinik (2008) found wide-spread concealment of diagnosis by family members because it was their belief that their relative would be treated pejoratively if the diagnosis were revealed to others: they found that 83% of family carers concealed from neighbours, almost half (49%) concealed from friends, and as many as 42% concealed from their children. Disturbingly, over one third did not disclose to their family physician and over two thirds reported concealing the diagnosis from a nurse and a social worker! This reluctance to disclose the diagnosis to others crosses many cultures. For example, examining the attitudes of lay persons for dementia-related stigma in Ethiopia, Adebiyi, Fagbola, Olakehinde, and Ogunniyi (2016) found that at least one third of lay people would not disclose a diagnosis of dementia due to perceived stigma and discrimination that would result. This small body of research suggests the importance of better understanding how diagnostic disclosure–as an everyday practice–may be linked to stigma and living well with dementia. In particular, more insight into this process from the perspective of people with dementia is required (Swaffer, 2014).
Methodology This study draws on data generated in the context of a larger study using participatory action research (PAR) methods to develop a selfmanagement program for people living with dementia in Canada. To develop the self-management program, people with dementia were recruited to assist in the development of the program. Three site-specific advisory hubs consisting of people with dementia and–in two situations–their family members, were formed in different parts of Canada. These individuals were recruited from the research team's connections with various other projects and initiatives, as well as through connections with local organizations who provided services and support for people with dementia. The advisory groups were tasked with providing ongoing input into the content and process of program development. This paper will draw primarily on data from one of these advisory groups–the only group composed entirely of people with dementia. This group had 8 members volunteer to participate (2 women and 6 men), all with a diagnosis of some type of dementia. Their age range was between 57 and 82 and the time since diagnosis ranged between 4 years to over 11 years. Three members were diagnosed with young onset dementia. Two of the members were unmarried – one lived alone and the other provided care to her aging parents. The remaining six individuals were married (one since his diagnosis) and living with their partners in the community. Several had university degrees or specialized technical training and had held professional positions prior to receiving their diagnosis. The group met monthly for 16 months for approximately 90 min each session. Initially, group meetings were loosely structured around the question: What do people with dementia need to know to ‘live well’ with dementia? Typically, one of the research team members facilitated the conversation, with a research assistant taking field notes. As the process progressed, meetings became more focused on developing and clarifying emerging topics and themes, and examining how these could be translated into a self-management education program. All meetings were audio-taped with field notes taken immediately following the sessions. Tapes were transcribed verbatim. Early in the process, the experience of stigma and discrimination emerged as a key experience in this group. Much of the conversation around stigma was initially fluid and spontaneous, but as the group process unfolded, facilitator prompts helped develop, refine and clarify the emerging understanding. All of the advisory group members actively participated in these discussions. We then drew on the theoretical lens of social citizenship to help structure a focused analysis of the transcripts and field notes. This was done with the understanding that this lens offers a viable approach for 46
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mentioned this event. In contrast, people spoke often and extensively on the topic of disclosing–or “discussing” as one participant preferred to say–one's diagnosis with others. The focus on disclosing to others, as opposed to receiving a diagnosis, seemed to reflect the close link between discrimination and naming one's problem as dementia. The topic of disclosing to others was raised with trepidation and fear by several members: “I think that many of us in the past or present are concerned more about how their relationship will change if that happens” (Phil). The decision to disclose, and to whom, represented an important decision-point in the day-to-day experience of living with dementia. The value of disclosing as a necessary, self-protective measure for explaining unusual behavior, was raised by all members of the group. Capturing the sentiments of many of the other members, one participant describes his views:
scrutinizing discrimination and making sense of its day-to-day impact on the lives of people with dementia. A systematic line-by-line analysis of the data was conducted, guided by the following questions: What does the experience of discrimination look like for this group? How did social position impact this experience? What fosters and/or challenges each of the following: active participation, opportunities for growth, and finding and/or retaining a sense of purpose? These questions operationalize the components of social citizenship as outlined by Bartlett and O'Connor (2010). In addition to using these questions to help ‘read’ the data, strategies associated with discourse analysis were employed where attention was paid to both the content of discussions but also to the process of how issues related to discrimination and social citizenship unfolded. This systematic analysis was conducted primarily by the first author but the final understanding was developed and validated in a collaborative process between the researchers and a member of the advisory group, all of whom had full access to the transcripts.
And all of a sudden you're starting to do things that you hadn't been doing in the past. There's all sorts of things that come along with having Alzheimer's and I'd rather they know than behind my back saying, “Gee, what's wrong with him?” So that's–I look at it that way, so I let people know (Angus).
Findings The relevance of stigma to the experience of living with dementia emerged from the moment of first introduction: “Hi, I'm Angus2 and we need to talk about stigma.” Over the next sixteen months, participants returned repeatedly to position stigma as a critical aspect of their experience. Often, stigma was positioned in relation to perceptions of a mental illness: “Yeah, that's the perception in their minds that this person has a mental issue,” says Louise. She goes on to suggest that, “There's a certain fear that people have when they know that. How are they going to talk to this person?” Notes another participant:
By letting others know that there was something wrong, members felt that they generated increased understanding and tolerance: I think in my case it was helpful to come to some form of an acceptance and be able to tell my friends and tell them maybe some of my limitations so that they would know and to be comfortable with that so that they're comfortable with that. Then we just go on with life (June). Being open about one's diagnosis cleared the space for help. I find this very helpful and I put this [badge] on my chest because, as you said, “You don't look like you are a disabled person.” So what I do is, when I go to the banks, because when I talk to strangers I get stressed and I cannot express myself. So with this, automatic when I'm having the problem–I just go–and they seem to be very understanding–clerks, cashiers, and stuff. Once they know that you have difficulty in communication, once you show them that it is not that you're under the influence of something–it's something else–and I show them the card and I find them very helpful (Mike).
Before I was talking about mental illness and dementia and that stigma thing comes in again. Somehow in their minds, they think they are dealing with someone who isn't all there. Somehow that's the impression of some people and they don't want to deal with somebody who might have an outburst and cause problems… (Tony). According to all but one member in this group, the experience of stigma was a pervasive problem that needed to be named and addressed, especially within the context of self-management: “Well, the word has to get out there that this is one of the important things, stigma…. So make it so that people understand what dementia is and that's a big part of it–stigma” (Angus). His comment was reacted to with nodding heads.
Sometimes though, the disclosure was not useful in this way. At various times, members of the advisory group talked about feeling discounted when they disclosed. Often their needs were ignored. Well, part of it is the frustration. I would suspect that in a lot of cases it's not going to be anger or argumentative or whatever. It's more your frustration having asked probably a few times–please identify yourself. You know what I'm dealing with as far as my Alzheimer's. And when they don't, that becomes hugely frustrating because, to a degree, they're ignoring you because you have asked (Harry).
For me that's one of the most depressing things. That bothers me more than anything. In most cases I know it's not intentional, that's just the way it is. Only one member denied experiencing stigma or discrimination as part of her experience of living with dementia. While she could understand how others experienced it, she felt she had been protected by her husband and family. Overall though, participants' stories highlighted the experience of stigma as an integral part of the experience of living with dementia. Within the context of stigma, the disclosure process as a site of uncertainty, tension, but also possibility, emerged. The remainder of this section will examine how the diagnostic disclosure process was linked to the experience of stigma and discrimination, including exploring how ideas about disclosing one's diagnosis changed as a result of the member's interactions with one another.
Notes another person: Sometimes the people that are in your life–trying to get them to truly understand the impact of this disease is really difficult. And I think in working with caregivers, one of the things I see hardest for a lot of caregivers to grasp onto is this concept of when you see this, this is the disease talking. It is not the person. This is about the disease (Louise). Within the context of disclosing, an important piece of the decision was not whether to disclose, but rather to whom and how. An interesting question is how many people do you tell that you have something that's going to produce dementia at some point in time? My practice has been to tell very few people and let the others kind of catch on that there is something fishy going on and tell them when needed (Phil).
Disclosing: why, when and to whom? During the period that this group met, very little talk time was devoted to the process of receiving a diagnosis–in fact no one even
For most of the participants considerable thought went into deciding with whom one wanted to share: “So, how do you tell? Who do you tell? Is it something you share with the public or is it something you tell only
2
Pseudonyms will be used throughout and all identifying information has been removed.
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a few people?” (Tony).
On the application form they would maybe ask you–is there any medical thing. So it's your choice to put in whatever… So do you want them to know that you have dementia? Not really. That is, you're limited–from a person of experience, if you put something in there that will give them second thoughts, most likely you will not get an answer. So that's the reality of things. (Tony).
There has to be a happy balance. I think that sometimes when you tell people. It reminds me of when I had a mentally handicapped cousin. I had to be very careful because people thought it was contagious. While there were no clear guidelines offered by this group, surprisingly, several members appeared to find it easier to disclose to strangers than they did to friends or family. Some were less concerned about spreading the news of their diagnosis:
Disclosing then could lead to loss of opportunity for growth, active participation and meaningful activity. I wanted to get involved in a volunteer organization and the people that I was going to get involved with made it reasonably clear that it was not the best place for me. That really made me frustrated and depressed… No, I didn't get angry. There is no point in getting angry with people. But I did feel depressed and anytime I feel that, my days of thinking of new things and new ways of doing things are at an end. And that bothers me (Harry). I sympathize with that Thomas because when the senior games came on in Westchester, I was interviewed for a job as a volunteer to be involved with them. I filled out an application with Alzheimer's on it. The interview was really impressive, they said you will be one of the hosts, but somehow they didn't call me back. So with [the next volunteer opportunity] I didn't put the medical conditions. So far, it's excellent. I got my certificate because I was able to answer the questions and do my volunteer work to say good participation (Mike).
My friend, he said, “Should I mention this [diagnosis] to Donnie?” who was a mutual friend. I said, “Oh, that's quite alright.” I said, “Anyone in [local area] that was a friend of mine that you bump into, you can say, “by the way, did you know?” But he wanted to know the parameters too. Who do we tell? Who do we just say we're going to shop? (Angus). Interestingly, while this participant was quite fine having his condition made public, his friend's hesitancy may reflect his lay awareness that disclosing would result in differential treatment to Angus. In addition to who to tell, there was some controversy regarding how to tell people. Within this discussion, the use of humor evoked considerable debate. Specifically, for some, humor was identified as an effective way of lightly conveying information: I'm of the policy of making it not too significant and mix it up with a little bit of levity too. You can say to someone–it may sound stupid–but they should take it easy with me, I've got Alzheimer's. Everybody laughs. Okay. That's another problem solved. So it all seemed to happen quite naturally and if you handle it with a little bit of levity, it makes it a lot easier (Phil).
I had a virtually identical experience. I was following the practice to always tell people I had Alzheimer's. Well the last couple of times, as soon as the Alzheimer's word came out, the interview cooled. I didn't get a phone call back so sometimes now I don't tell people (Tony). Summarizing the discussion and highlighting the quandary associated with disclosing, Louise notes: “Yes, disclosing or not disclosing. Sometimes you have to feel out the people you want to get involved with.” While clear hesitancy around disclosing certainly dominated the group experience, the willingness to consider others' reactions to disclosure as examples of discrimination was not readily accepted by all. Rather, although not questioning the ‘truth’ of the various experiences, some members searched for a less offensive reason for behavior that could be seen as oppressive. For example, one participant tries to rationalize the broker's response to Angus:
Not all felt comfortable with this statement however. Several challenged the use of humor as a strategy, highlighting a double-bind between the ability to laugh at one's self while not minimizing the impact or letting others off the hook. This participant describes the use of humor but links it to the underlying pain: Try not to let it bother you, as much as you can. I keep going back to the golf because that's what I do. And I belong to the club and I used to run men's night for years and years. I knew all the rules. Now they don't ask me about a rule. They don't ask me about money or something. I can't collect money because I can't put “paid” next to the guy's name or something. So it's funny in one sense, and it's kind of disappointing in another.… It's so obvious [that people are assuming incapability] and sometimes I laugh about it. And other times– (Angus).
I think from listening, I think we have to be careful in not lumping that third-party people dealing with the issue of the illness and lumping it with stigma. I don't know if I'm talking about this correctly. When you say your broker is now dealing with your wife, probably the broker is aware of your condition and it's the easiest way of professionally dealing with the present situation. So I don't think that should be called a stigma. It is more like the broker or lawyer–whatever–dealing with the present situation. Your wife as the caregiver is now the person to deal with rather than you, because like with me–I forget. So it's better for them to deal with the wife because you and your wife will be talking about issues, financial and legal interests. And he might be thinking it's better dealing with your wife, bypassing you. But when we hear them talking, we think we're being ostracized or being stigmatized. I don't know (Phil).
The risk of disclosure While participants did recognize that disclosing their diagnosis could be useful, most also highlighted the disclosure process as a set-up for discrimination. My broker–I've been dealing with her for 25 years and she doesn't call me anymore. She calls my wife. For 22 years, she never even talked to my wife once. My wife answered the phone and she always asked for me, even on her investments. As soon as my wife told her–I'm the one who told her, I guess. And the next thing you know, she doesn't–and she doesn't do it on purpose. But she just–that's just the way it is (Angus).
In this example, the first participant attempts to clarify: “If I said to him or her–in this case, it's a her–if I said to her, ‘Oh, by the way. I'd rather you deal more with my wife now and look after her only.’ I didn't say that.” Again, his interpretation is not accepted:
This participant returned repeatedly to his anger that he felt diminished and invisible since his disclosure. He clearly linked his experiences to being stigmatized. He was not alone. For at least half of the participants, there was a belief that once people found out about the diagnosis, they treated you differently: “Once they found out, they're not going to look at you when you tell them you've got Alzheimer's” (Harry). Another highlights the practical ramifications of this differential treatment:
And as I said, to repeat my comment of a few moments ago, I think we're in danger of treating this whole thing a little too seriously in terms of stigma and disclosing it, and that sort of thing because deterioration of mental acuity and forgetting–that sort of thing–is common–really quite common. I have a mother who died at 107 and towards the end she would say, “You know, not being able to remember is not all that bad because I can read the same book over and over again and it's always new.” And that wasn't Alzheimer's. That was just growing old (Phil). 48
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be a leader. And again, this view was challenged by another member:
You have to be able to empower yourself to take charge of the situation because if I met somebody with a newly-diagnosed one, I could tell them that there's a lot of preconceived ideas about Alzheimer's and it's up to you to…–set the facts right. I can even make light–not too much a deep issue about it. You can tell them in a light-hearted way about what it is and what she might want to do or things from me with experience, before I can tell her my experience about it. And that way she would have some ideas of how a person who has been diagnosed before her has dealt with the issues (Mike).
But I can appreciate what you're saying, Phil, but in my case–like I was diagnosed when I was 45. So it wasn't a case of old. So there's other issues and other stigmas and other things. Later, this same participant notes: “Stigma can hurt. It can hurt your feelings.” These exchanges are important because they demonstrate the difficulty that some members had naming experiences as discrimination and/or oppressive. These participants were denied the experience of feeling justifiably angry. Instead, the tendency to discount, or brush off one's feelings, emerged: “But stigma shouldn't–at a point shouldn't bother us.” Significantly, others judged themselves pejoratively for interpreting an act as discriminatory, positioning their response as a sign of personal deficiency.
It also fostered opportunities for community building. I think the other thing too is, I would tell the person that it would be great if they would join a support group because being able to talk about these things does give you more knowledge, more empowerment to be able to go out and tackle the world with the stigma. I think that's important (Louise).
I think while we're disclosing, we're worried about stigma. I think sometimes we tend to make it a bigger problem than it really is. If we send signals when we're telling people that it's a great big disaster–well, they'll treat it as such.
As the group progressed, members became increasingly assertive about the importance of self-disclosing their diagnosis to others. Within the context of self-management, it was seen as an important part of “taking control.”
The danger here then lay in the fact that almost everyone in the group could identify personal situations where someone had responded to their disclosure in ways that could be construed as belittling, discounting and/or devaluing, yet, at least in the beginning of the group process, not all could label the behavior of the other as the problem. Notably, this changed as the group went on and attempts to minimize the hurt of discriminatory responses lessened.
Angus: I think that you need to be aware of it, but you don't want to be worried. Worried isn't right, but not to be overwhelmed by it or strangled by it – like don't let it sort of control you. You control it. Harry: Yeah. This is how it is. Phil: That's right. You control the message. You control how you deal with it in public and how you want to communicate that. Importantly, a shift in perception occurred as the group developed. For example, Phil, who early into the group process discussed his reluctance to disclose, revealed a change of heart toward the end of the group meetings, noting that his practice now was to disclose and that he wished he had started disclosing more openly earlier. An overall message from this group then, and one that became increasingly stronger as members got to know one another, regarded the importance of sharing the diagnosis with others. Summing up one of the discussions, the group facilitator noted: “So it occurs to me when I hear you say that, that while there's this challenge to deal with what people think about dementia and their fears and lack of awareness and education, at the same time, in order for you to manage this disease in the best way possible for your own well-being, you've got to be putting it out there all the time so everybody knows?”
Disclosing: an act of resistance? It all depends on the situation because I do in some presentations talk about going in for a procedure at the hospital and the clerk gave me the form to sign. She said sign it and date it. So I signed it and said, “What's the date?” I don't know what the date is. She laughed. She laughed at me! And said, “Well, you're here so you know what the date is.” And then that was the end of the conversation. And – no, no, no, that will not be acceptable. I mean, I understand what you're saying. But there is that other more sort of bigger example, if you will, where I don't address that with levity. If that clerk knew one hell of a lot better – she was in a hospital. And if she didn't know better, then I was about to teach her (Mike).
Tony: Because unless you're up front telling them, no one will know. Louise: Yeah. That's the only way I was able to do it right from the beginning is telling them, telling them, and having a medical background helped me a lot to be able to do that.
The link between disclosing and discrimination in the everyday lived experience is not surprising. It is consistent with other research (see, for example, Burgener, Buckwalter, Perkhounkova, Liu et al., 2015; Burgener, Buckwalter, Perkhounkova, & Liu, 2015). More unexpected was how the strategic use of self-disclosure to combat stigma was raised by several members:
Clarifying still further the facilitator notes: “One of the things I think I'm hearing is that a program for self-management shouldn't just be geared towards the person with the dementia. It also needs to be geared towards changing the community and changing society and we're just scratching the surface.” And the immediate response from one of the participants: “Yes, we need society to facilitate this.”
…being able to talk about these things does give you more knowledge, more empowerment to be able to go out and tackle the world with the stigma. I think that's important (Mike). These participants described the potential to use self-disclosure as a means of empowerment of self and others with dementia.
Creating a place to speak
…you take control, so you're basically taking control of your diagnosis and in freely talking about it, plus the fact that you get to educate people because part of the stigma is the sort of unknown (Louise).
All three advisory groups talked about being treated differently once people found out their diagnosis. However, the naming of this treatment as stigma emerged spontaneously and much more strongly in this group, than it did in the other two advisory groups. When asked to consider this, there was unanimous agreement by the members of this group, that they had felt freer to articulate their experience as discrimination and stigma, at least partially because there were no care partners in it.
Notes another participant: “Yes, that's what we're here for aren't we? To make people understand?” The importance of being comfortable about disclosing emerged repeatedly, especially with those who had taken on more active advocacy roles. In addition to the personal gain of understanding, disclosing fostered education, advocacy and the opportunity to mentor others–to 49
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to revelations about their diagnosis. Still, drawing attention to this aspect of day-to-day practice in life with dementia is important for two reasons. First, since it was the disclosure of the diagnosis and not the functional changes affiliated with the dementia that was linked to the experience of stigma, this study illustrates clearly how society is accountable for contributing to the hardships of those with dementia. This study highlights the ongoing insult of sharing this diagnosis. This was at both the individual level–for example, friends and family treated the person differently–and at a systemic level, with participants' stories also demonstrating how diagnostic disclosure could serve to limit opportunities for active participation, growth and finding purpose. Almost all of the participants had examples in which the decision to disclose their diagnosis had resulted in them being denied an opportunity to contribute to society in a meaningful way, for example by taking up volunteer work for which they were adequately qualified. In other words, their stories highlighted societal practices that challenge their essential citizenship. Second, while the study highlights how disclosure can challenge the rights of social citizenship, it also highlights the use of disclosure as a means for claiming active citizenship. Similar to findings by Birt, Poland, Csipke, and Charlesworth (2017), the study demonstrates that people used diagnostic disclosure as a tool for promoting the adaptations they needed in order to remain active in social networks. Hence, this study supports the point that disclosure can help people with dementia “manage” their dementia by helping others modify expectations and provide support. However, the findings also extend the discussion to recognize that disclosure can be a useful strategy for both education and empowerment, a powerful tool for resisting stigma and challenging discriminatory practices. Link and Phelan (2001) identify two principles in considering how to really change stigma. The first is that any approach must be multifaceted and multilevel. It needs to be multifaceted to address the many mechanisms that can lead to disadvantaged outcomes, and it needs to be multilevel to address issues of both individual and structural discrimination. But second, and most important, an approach to change must ultimately address the fundamental cause of stigma by challenging deeply held attitudes and beliefs of powerful groups that lead to labeling, stereotyping, setting apart, devaluing, and discriminating, or it must change circumstances so as to limit the power of such groups to make their cognitions the dominant ones. When a person with dementia speaks out and owns his or her diagnosis, that person is both educating but importantly also challenging deeply held beliefs by society-at-large that link dementia to global incapacity because that person is clearly modeling a contrast. While it is not the individual responsibility of the person with dementia to overcome dementia-related stigma–it is a societal responsibility–owning one's diagnosis has been raised as an important step toward combating internalized stigma and promoting personal empowerment (see for example Corrigan & Rao, 2012).
I can only think that–and it would be in my case and I've seen it over and over and over again–is that when you are just people with dementia together, I think you come out feeling stronger and more confident and able to deal with what's happening to you, rather than having the crutch of your spouse (Harry). Another expanded upon this: “I think if caregivers get into that picture, for me, I think it would be something of an intrusion.” There were many reasons that a sense of silencing occurred. Some described a sense of losing voice: “We're patient with each other. But with the caregivers in it as well–they may start, “I'll help you along in conversation” or “What my husband's really meaning to say is–”. Importantly, members were afraid of saying something that might hurt their care partner. This was mostly because they recognized the care and good intentions of their partner and were loathe to hurt them, but pragmatically, there was also the real recognition that they could not afford to offend their partner because of their dependence on that person. “Sometimes we just clam up because we're afraid that if we say something, then they won't help us” (Harry). Irrespective of their reason, all were clear that the ability to name and talk about stigma would not have been as accessible had family members also participated in the same group. Unanimously, they advocated for the importance of having group opportunities that did not include their partners if they were to be empowered to speak. Discussion This study supports the importance of recognizing that stigma is a critical part of the lived experience of dementia from the perspective of those living with the diagnosis. The experience of stigma emerged spontaneously in open conversation and represented an ongoing theme that participants returned to repeatedly when discussing, over a sixteen month period, their experiences living with dementia. All could provide examples of discriminatory treatment, although for several, at least initially, there was some reluctance to name these experiences as discrimination or rooted in stigma. The participants' stories suggest that not naming the stigma could be problematic because it was then too easy to internalize discriminatory treatment as a personal issue. This lends insight into how people with dementia may come to unintentionally limit themselves, reinforcing what Goffman (1963) recognizes as a “split between self-demands and self” (p.18). Failure to name stigma also denied persons with dementia the legitimate right to be angry when confronted with these discriminatory practices. Thus, the importance of ensuring a social context where stigma can be explicitly named and discussed is identified, reinforcing the classic feminist slogan: the personal is political. Interestingly however, the study illustrates that the context for facilitating discussions about stigma must be considered. In particular, the potential of care partners to inadvertently and unintentionally silence is important (see also, Wiersma et al., 2016). In addition to lending insight into the experience of stigma from the perspective of persons with dementia, a valuable contribution of this study is that it also draws attention to the importance of diagnostic disclosure as an every-day practice that shapes this lived experience of dementia. Participants were confronted daily with what to say to others about their diagnosis and how to say it. This study explores this process from the perspective of those with the diagnosis: it lends insight into how people with dementia choose, or don't choose, to disclose their diagnosis to others. An important finding is that the choice to disclose is strategic and well-considered, reflecting active citizenship and confirming a level of awareness and insight (Clare, 2010). The importance of this disclosing process really shouldn't be a surprise: it is recognized that diagnostic labels serve as cues that activate stigma and stereotypes (Garand, Lingler, Conner, & Dew, 2009) and so it's not unexpected that participants linked discrimination from others
Conclusion This study highlights the importance of fostering discussions around the disclosure of the diagnosis to others by the person with dementia as an important strategy for depersonalizing and politicizing for two reasons. First, it allows the naming and normalizing of discriminatory experiences that routinely follow disclosure. This prevents individuals from discounting their experiences or internalizing blame for any differential treatment. Second, it provides a clear strategy of resistance, recognizing the expertise of the person with dementia to educate and challenge while also facilitating linkages with other persons with dementia. Bartlett (2014), in her research with dementia self-advocates, identifies these linkages between people with dementia as providing a structure for the development of a subculture that opposes discriminatory and oppressive views and practice, making them beneficial at both the individual and societal level. Diagnostic disclosure is at the 50
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heart of these connections.
Garand, L., Lingler, J. H., Conner, K. O., & Dew, M. A. (2009). Diagnostic labels, stigma, and participation in research related to dementia and mild cognitive impairment. Research in Gerontological Nursing, 2(2), 112–121. Goffman, E. (1963). Stigma. New York: Simon and Schuster. Hellström, I., & Torres, S. (2013). A wish to know but not always tell—Couples living with dementia talk about disclosure preferences. Aging & Mental Health, 17(2), 157–167. Katsuno, T. (2005). Dementia from the inside: How people with early-stage dementia evaluate their quality of life. Ageing and Society, 25(2), 197–214. Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385. Love, K. (2016). Living well with dementia: The Pygmalion effect. Dementia action alliance. Retrieved from https://daanow.org/living-well-with-dementia-the-pygmalioneffect/. Milby, E., Murphy, G., & Winthrop, A. (2017). Diagnostic disclosure in dementia: Understanding the experiences of clinicians and patients who have recently given or received a diagnosis. Dementia, 16(5), 611–628. Milne, A. (2010). The 'D' word: Reflections on the relationship between stigma, discrimination and dementia. Journal of Mental Health, 19(3), 227–233. Mitchell, G., McCollum, P., & Monaghan, C. (2013). The personal impact of disclosure of a dementia diagnosis: A thematic review of the literature. British Journal of Neuroscience Nursing, 9(5). Mitchell, G. J., Dupuis, S. L., & Kontos, P. C. (2013). Dementia discourse: From imposed suffering to knowing other-wise. Journal of Applied Hermeneutics, 12(5), 1–19. O'Connor, D., & Nedlund, A. C. (2016). Editorial: Citizenship and dementia special edition. Dementia: International Journal of Social Research & Practice, 15(3). O'Connor, D., Phinney, A., Smith, A., Small, J., Purves, B., Perry, J., ... Beattie, L. (2007). Personhood in dementia care: Developing a research agenda for broadening the vision. Dementia: International Journal of Social Research and Practice, 6(1), 121–143. Prince, M., Bryce, R., & Ferri, C. (2011). World Alzheimer's report 2011: The benefit of early diagnosis and intervention. London: Alzheimer's Disease International. Swaffer, K. (2014). Dementia: Stigma, language, and dementia-friendly. Dementia, 13(6), 709–716. Waldemar, G., Phung, K. T., Burns, A., Georges, J., Hansen, F. R., Iliffe, S., ... on behalf of the European Dementia Consensus Network (EDCON) (2007). Access to diagnostic evaluation and treatment for dementia in Europe. International Journal of Geriatric Psychiatry, 22, 47–54. Werner, P., & Heinik, J. (2008). Stigma by association and Alzheimer's disease. Aging & Mental Health, 12(1), 92–99. Wiersma, E., O'Connor, D., Loiselle, L., Hickman, K., Heibein, B., Hounam, B., & Mann, J. (2016). Creating space for citizenship: The impact of group structure on validating the voices of people with dementia. Dementia: International Journal of social research and practice, 15(3). Zeilig, H. (2014). Dementia as a cultural metaphor. The Gerontologist, 54(2), 258–267. Zimmermann, M. (2017). Alzheimer's disease metaphors as mirror and lens to the stigma of dementia. Literature and Medicine, 35(1).
References Adebiyi, A. O., Fagbola, M. A., Olakehinde, O., & Ogunniyi, A. (2016). Enacted and implied stigma for dementia in a community in south-west Nigeria. Psychogeriatrics, 16(4), 268–273. Aminzadeh, F., Byszewski, A., Molnar, F. J., & Eisner, M. (2007). Emotional impact of dementia diagnosis: Exploring persons with dementia and caregivers' perspectives. Aging & Mental Health, 11(3), 281–290. Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C., et al. (2004). Disclosing a diagnosis of dementia: A systematic review. International Journal of Geriatric Psychiatry, 19, 151–169. Bartlett, R. (2014). The emergent modes of dementia activism. Ageing and Society, 34, 623–644. Bartlett, R., & O'Connor, D. (2007). From personhood to citizenship: Broadening the lens for dementia practice and research. Journal of Aging Studies, 21, 107–118. Bartlett, R., & O'Connor, D. (2010). Broadening the dementia debate: Toward social citizenship. London, United Kingdom: Policy Press. Batsch, N. L., & Mittelman, M. S. (Eds.). (2012). World Alzheimer report 2012: Overcoming the stigma of dementia. Retrieved from www.alz.co.uk/research/world-report-2012. Behuniak, S. (2011). The living dead? The construction of people with Alzheimer's disease as zombies. Ageing and Society, 31(1), 70–92. Benbow, S. M., & Jolley, D. (2012). Dementia: Stigma and its effects. Neurodegenerative Disease Management, 2(2), 165. Birt, L., Poland, F., Csipke, E., & Charlesworth, G. (2017). Shifting dementia discourses from deficit to active citizenship. Sociology of Health & Illness, 3(2), 199–211. Burgener, S. C., & Berger, B. (2008). Measuring perceived stigma in persons with progressive neurological disease: Alzheimer's dementia and Parkinson's disease. Dementia, 7(1), 31–53. Burgener, S. C., Buckwalter, K., Perkhounkova, Y., & Liu, M. (2015). The effects of perceived stigma on quality of life outcomes in persons with early-stage dementia: Longitudinal findings: Part 2. Dementia, 14(5), 609–632. Burgener, S. C., Buckwalter, K., Perkhounkova, Y., Liu, M. F., Riley, R., Einhorn, C. J., ... Hahn-Swanson, C. (2015). Perceived stigma in persons with early-stage dementia: Longitudinal findings: Part 1. Dementia, 14(5), 589–608. Clare, L. (2010). Awareness in people with severe dementia: Review and integration. Aging & Mental Health, 14(1), 20–32. http://dx.doi.org/10.1080/ 13607860903421029. Corrigan, P. W., & Rao, D. (2012). In review: On the self-stigma of mental illness: Stages, disclosure, and strategies for change. Canadian Psychiatry, 57(8), 464–469. Derksen, E., Vernooij-Dassen, M., Gillissen, F., Olde Rikkert, M., & Scheltens, P. (2006). Impact of diagnostic disclosure in dementia on patients and carers: Qualitative case series analysis. Aging & Mental Health, 10(5), 525–531. http://dx.doi.org/10.1080/ 13607860600638024.
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Journal of Aging Studies journal homepage: www.elsevier.com/locate/jaging
Stigma, discrimination and agency: Diagnostic disclosure as an everyday practice shaping social citizenship☆
T
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Deborah O'Connora, , Jim Mannb,1, Elaine Wiersmac a
School of Social Work, University of British Columbia, 2080 West Mall, Vancouver, BC V6T 1Z2, Canada Dementia Advocate, Vancouver, BC, Canada c Centre for Education and Research on Aging & Health, Lakehead University, Thunder Bay, Ontario, Canada b
A R T I C L E I N F O
A B S T R A C T
Keywords: Stigma Discrimination Diagnostic disclosure Citizenship Dementia
The importance of stigma in shaping the experiences of people living with dementia and challenging their social citizenship emerges repeatedly as a powerful and negative force. In a recent participatory action research (PAR) study focused on understanding what people with dementia need to know to live well, this link between stigma, discrimination and social citizenship emerged once again. A group of people living with dementia (n = 8) met monthly for 16 months to discuss their experiences and advise on the curriculum of a proposed self-management program. From the first introduction, stigma was identified as a defining feature of the experience of living well with dementia. This paper analyses this group's talk around stigma and discrimination, drawing attention to the critical role that diagnostic disclosure has in both positioning people with dementia in a stigmatizing way and, also, acting as a strategy of resistance that facilitates full social citizenship.
Introduction There is no question that a diagnosis of dementia–or major neurocognitive disorder as it is now known in the DSM 5–will represent a major life transition. However, it is also important to consider the extent to which difficulties and adjustments caused by the neuropathology are compounded by societal responses to the person with the diagnosis. Specifically, a growing body of research recognizes that at least some of the challenges faced by people with dementia are a result of the way they are treated within their broader socio-relational contexts (O'Connor et al., 2007). When this broader lens is applied to understanding the dementia experience, stigma as a dominating feature of the experience is highlighted (Batsch & Mittelman, 2012; Milne, 2010; Swaffer, 2014). For example, Katsuno (2005) found that for people living with early onset dementia, subjective life satisfaction was mired not because of the functional declines associated with the dementia, but because of the stigma they encountered as a result of their diagnosis. These findings are, arguably, unsurprising: the dementia experience takes place within the context of an ageist and ableist society, and mental health issues–compared to physical issues–engender particularly strong fear. Goffman (1963) defines stigma as a sign or mark that designates the possessor as “spoiled” and therefore as less valued than “normal”
people; it is “deeply discrediting” and reduces the bearer "from a whole and usual person to a tainted, discounted one" (p. 3). Benbow and Jolley (2012) extend this description to suggest that stigma includes three aspects: stereotypes (collective judgments about groups of people), prejudice (emotional reactions to a stereotyped person), and discrimination (behaviors that are associated with prejudice, including avoidance, coercion, and segregation). Through processes of labeling, stereotyping, separation, status loss, and discrimination, stigma results in creating an ‘us and them’ mentality that results in “othering” and exclusion of one group of people by another more powerful group (Link & Phelan, 2001, p. 367). Within the context of dementia, stigma labels people with dementia by their diagnosis, with negative stereotypes of a loss of self and capabilities through the use of metaphors such as “the walking dead,” “zombies” or “empty shells” (Behuniak, 2011; Zimmermann, 2017). At a societal level dementia is portrayed as “a monstrous force that we must fight” (Zeilig, 2014, p. 265). Individual behaviors and actions then become interpreted through these negative stereotypes. Stigma can be externally imposed by others, but importantly, it can also be internalized, with the person feeling a sense of shame or being “less than” (Burgener, Buckwalter, Perkhounkova, & Liu, 2015; Burgener, Buckwalter, Perkhounkova, Liu, Riley, Einhorn, Fitzsimmons, HahnSwanson, 2015; Burgener & Berger, 2008; Swaffer, 2014). Love (2016)
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This study was funded by the Canadian Institutes of Health Research, Knowledge to Action Grant KAL-262592. Corresponding author. E-mail addresses: [email protected] (D. O'Connor), [email protected] (J. Mann), [email protected] (E. Wiersma). 1 Person with Dementia. ⁎
https://doi.org/10.1016/j.jaging.2018.01.010 Received 4 October 2017; Received in revised form 5 January 2018; Accepted 7 January 2018 Available online 09 February 2018 0890-4065/ © 2018 Elsevier Inc. All rights reserved.
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referenced this as the “Pygmalion effect” wherein people with dementia may voluntarily begin to limit themselves as they respond to being treated with less respect and as if they were less competent. As Mitchell, Dupuis, and Kontos (2013) wrote:
Only one study was found that explicitly examined the decision to disclose information about diagnosis to others which included the perspective of those with dementia. Hellström and Torres (2013) interviewed 20 couples to better understand what couples living with dementia want to know and tell about the disease. While most wanted to know at least something about the diagnosis, there was more variability amongst the couples in relation to how much they wanted to tell others about the diagnosis. Often decisions to withhold information were based on the preferences of the person with dementia and could cause difficulties for the care partner. While this study recognizes some link between reluctance to tell others and stigma it does not explore this connection. The purpose of this article is to extend understanding around the diagnostic disclosure process for people with dementia, considering it in relation to stigma, discrimination and social citizenship. Grounded in the experiences of people with dementia, this paper explores the importance of disclosure to others as a day-to-day practice that both facilitates the experience of discrimination and also offers a strategy for naming and resisting stigma.
Once diagnosed with dementia, persons and their feelings, actions, and expressions become symptoms within a problematized field of possibility. If persons with dementia express feeling healthy and well, they are judged as being in denial. If they are having trouble remembering details but fill in the gaps to save face, they are said to be confabulating. If they get angry with the way in which health care workers are providing care, then they are labeled as aggressive and may end up being restrained and isolated (p. 4). As a counterpoint to the focus on stigma, growing attention is being paid to the retention of social citizenship within the context of dementia (Bartlett & O'Connor, 2007; O'Connor & Nedlund, 2016). Specifically, stigma challenges the rights of each person with dementia to be accorded and treated as an active agent–or citizen–with rights, history and competencies. A social citizenship lens draws attention to how relationships and practices respond to the entitlement of every person with dementia to experience freedom from discrimination, and to have opportunities to grow and participate in life to the fullest extent possible (Bartlett & O'Connor, 2010). This lens recognizes that social citizenship is both upheld, and challenged, through everyday relational practices. One such everyday practice revolves around the diagnosis and disclosure of dementia. Over the past decade, there has been growing focus on the importance of earlier diagnosis, and research has examined how–or if–the person with dementia should be told. It is now relatively uncontroversial that, despite continued physician reluctance to disclose (Bamford et al., 2004; Milby, Murphy, & Winthrop, 2017), earlier diagnosis is beneficial to both the person with dementia and his or her family in helping them prepare for the condition (Derksen, VernooijDassen, Gillissen, Rikkert & Scheltens, 2006; Prince, Bryce, & Ferri, 2011). Moreover, research suggests that people with the diagnosis generally want to be told the diagnosis (Mitchell, McCollum, & Monaghan, 2013; Waldemar et al., 2007) even though the receipt of the news can be viewed as a traumatic upheaval (Aminzadeh, Byszewski, Molnar, & Eisner, 2007; Milby et al., 2017). To date, research examining diagnostic disclosure has largely been one-way–from the professional to the person with dementia. But what happens with the diagnosis once received? Little research has explored how diagnostic disclosure is used in the day-to-day lives of those living with dementia. In other words, how do people with dementia choose to disclose their diagnosis to others as they move through the dementia experience? The limited work that has examined this issue suggests that at least for some, there may be a tendency to conceal the diagnosis related to fear or experiences of stigma (Hellström & Torres, 2013). For example, Werner and Heinik (2008) found wide-spread concealment of diagnosis by family members because it was their belief that their relative would be treated pejoratively if the diagnosis were revealed to others: they found that 83% of family carers concealed from neighbours, almost half (49%) concealed from friends, and as many as 42% concealed from their children. Disturbingly, over one third did not disclose to their family physician and over two thirds reported concealing the diagnosis from a nurse and a social worker! This reluctance to disclose the diagnosis to others crosses many cultures. For example, examining the attitudes of lay persons for dementia-related stigma in Ethiopia, Adebiyi, Fagbola, Olakehinde, and Ogunniyi (2016) found that at least one third of lay people would not disclose a diagnosis of dementia due to perceived stigma and discrimination that would result. This small body of research suggests the importance of better understanding how diagnostic disclosure–as an everyday practice–may be linked to stigma and living well with dementia. In particular, more insight into this process from the perspective of people with dementia is required (Swaffer, 2014).
Methodology This study draws on data generated in the context of a larger study using participatory action research (PAR) methods to develop a selfmanagement program for people living with dementia in Canada. To develop the self-management program, people with dementia were recruited to assist in the development of the program. Three site-specific advisory hubs consisting of people with dementia and–in two situations–their family members, were formed in different parts of Canada. These individuals were recruited from the research team's connections with various other projects and initiatives, as well as through connections with local organizations who provided services and support for people with dementia. The advisory groups were tasked with providing ongoing input into the content and process of program development. This paper will draw primarily on data from one of these advisory groups–the only group composed entirely of people with dementia. This group had 8 members volunteer to participate (2 women and 6 men), all with a diagnosis of some type of dementia. Their age range was between 57 and 82 and the time since diagnosis ranged between 4 years to over 11 years. Three members were diagnosed with young onset dementia. Two of the members were unmarried – one lived alone and the other provided care to her aging parents. The remaining six individuals were married (one since his diagnosis) and living with their partners in the community. Several had university degrees or specialized technical training and had held professional positions prior to receiving their diagnosis. The group met monthly for 16 months for approximately 90 min each session. Initially, group meetings were loosely structured around the question: What do people with dementia need to know to ‘live well’ with dementia? Typically, one of the research team members facilitated the conversation, with a research assistant taking field notes. As the process progressed, meetings became more focused on developing and clarifying emerging topics and themes, and examining how these could be translated into a self-management education program. All meetings were audio-taped with field notes taken immediately following the sessions. Tapes were transcribed verbatim. Early in the process, the experience of stigma and discrimination emerged as a key experience in this group. Much of the conversation around stigma was initially fluid and spontaneous, but as the group process unfolded, facilitator prompts helped develop, refine and clarify the emerging understanding. All of the advisory group members actively participated in these discussions. We then drew on the theoretical lens of social citizenship to help structure a focused analysis of the transcripts and field notes. This was done with the understanding that this lens offers a viable approach for 46
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mentioned this event. In contrast, people spoke often and extensively on the topic of disclosing–or “discussing” as one participant preferred to say–one's diagnosis with others. The focus on disclosing to others, as opposed to receiving a diagnosis, seemed to reflect the close link between discrimination and naming one's problem as dementia. The topic of disclosing to others was raised with trepidation and fear by several members: “I think that many of us in the past or present are concerned more about how their relationship will change if that happens” (Phil). The decision to disclose, and to whom, represented an important decision-point in the day-to-day experience of living with dementia. The value of disclosing as a necessary, self-protective measure for explaining unusual behavior, was raised by all members of the group. Capturing the sentiments of many of the other members, one participant describes his views:
scrutinizing discrimination and making sense of its day-to-day impact on the lives of people with dementia. A systematic line-by-line analysis of the data was conducted, guided by the following questions: What does the experience of discrimination look like for this group? How did social position impact this experience? What fosters and/or challenges each of the following: active participation, opportunities for growth, and finding and/or retaining a sense of purpose? These questions operationalize the components of social citizenship as outlined by Bartlett and O'Connor (2010). In addition to using these questions to help ‘read’ the data, strategies associated with discourse analysis were employed where attention was paid to both the content of discussions but also to the process of how issues related to discrimination and social citizenship unfolded. This systematic analysis was conducted primarily by the first author but the final understanding was developed and validated in a collaborative process between the researchers and a member of the advisory group, all of whom had full access to the transcripts.
And all of a sudden you're starting to do things that you hadn't been doing in the past. There's all sorts of things that come along with having Alzheimer's and I'd rather they know than behind my back saying, “Gee, what's wrong with him?” So that's–I look at it that way, so I let people know (Angus).
Findings The relevance of stigma to the experience of living with dementia emerged from the moment of first introduction: “Hi, I'm Angus2 and we need to talk about stigma.” Over the next sixteen months, participants returned repeatedly to position stigma as a critical aspect of their experience. Often, stigma was positioned in relation to perceptions of a mental illness: “Yeah, that's the perception in their minds that this person has a mental issue,” says Louise. She goes on to suggest that, “There's a certain fear that people have when they know that. How are they going to talk to this person?” Notes another participant:
By letting others know that there was something wrong, members felt that they generated increased understanding and tolerance: I think in my case it was helpful to come to some form of an acceptance and be able to tell my friends and tell them maybe some of my limitations so that they would know and to be comfortable with that so that they're comfortable with that. Then we just go on with life (June). Being open about one's diagnosis cleared the space for help. I find this very helpful and I put this [badge] on my chest because, as you said, “You don't look like you are a disabled person.” So what I do is, when I go to the banks, because when I talk to strangers I get stressed and I cannot express myself. So with this, automatic when I'm having the problem–I just go–and they seem to be very understanding–clerks, cashiers, and stuff. Once they know that you have difficulty in communication, once you show them that it is not that you're under the influence of something–it's something else–and I show them the card and I find them very helpful (Mike).
Before I was talking about mental illness and dementia and that stigma thing comes in again. Somehow in their minds, they think they are dealing with someone who isn't all there. Somehow that's the impression of some people and they don't want to deal with somebody who might have an outburst and cause problems… (Tony). According to all but one member in this group, the experience of stigma was a pervasive problem that needed to be named and addressed, especially within the context of self-management: “Well, the word has to get out there that this is one of the important things, stigma…. So make it so that people understand what dementia is and that's a big part of it–stigma” (Angus). His comment was reacted to with nodding heads.
Sometimes though, the disclosure was not useful in this way. At various times, members of the advisory group talked about feeling discounted when they disclosed. Often their needs were ignored. Well, part of it is the frustration. I would suspect that in a lot of cases it's not going to be anger or argumentative or whatever. It's more your frustration having asked probably a few times–please identify yourself. You know what I'm dealing with as far as my Alzheimer's. And when they don't, that becomes hugely frustrating because, to a degree, they're ignoring you because you have asked (Harry).
For me that's one of the most depressing things. That bothers me more than anything. In most cases I know it's not intentional, that's just the way it is. Only one member denied experiencing stigma or discrimination as part of her experience of living with dementia. While she could understand how others experienced it, she felt she had been protected by her husband and family. Overall though, participants' stories highlighted the experience of stigma as an integral part of the experience of living with dementia. Within the context of stigma, the disclosure process as a site of uncertainty, tension, but also possibility, emerged. The remainder of this section will examine how the diagnostic disclosure process was linked to the experience of stigma and discrimination, including exploring how ideas about disclosing one's diagnosis changed as a result of the member's interactions with one another.
Notes another person: Sometimes the people that are in your life–trying to get them to truly understand the impact of this disease is really difficult. And I think in working with caregivers, one of the things I see hardest for a lot of caregivers to grasp onto is this concept of when you see this, this is the disease talking. It is not the person. This is about the disease (Louise). Within the context of disclosing, an important piece of the decision was not whether to disclose, but rather to whom and how. An interesting question is how many people do you tell that you have something that's going to produce dementia at some point in time? My practice has been to tell very few people and let the others kind of catch on that there is something fishy going on and tell them when needed (Phil).
Disclosing: why, when and to whom? During the period that this group met, very little talk time was devoted to the process of receiving a diagnosis–in fact no one even
For most of the participants considerable thought went into deciding with whom one wanted to share: “So, how do you tell? Who do you tell? Is it something you share with the public or is it something you tell only
2
Pseudonyms will be used throughout and all identifying information has been removed.
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a few people?” (Tony).
On the application form they would maybe ask you–is there any medical thing. So it's your choice to put in whatever… So do you want them to know that you have dementia? Not really. That is, you're limited–from a person of experience, if you put something in there that will give them second thoughts, most likely you will not get an answer. So that's the reality of things. (Tony).
There has to be a happy balance. I think that sometimes when you tell people. It reminds me of when I had a mentally handicapped cousin. I had to be very careful because people thought it was contagious. While there were no clear guidelines offered by this group, surprisingly, several members appeared to find it easier to disclose to strangers than they did to friends or family. Some were less concerned about spreading the news of their diagnosis:
Disclosing then could lead to loss of opportunity for growth, active participation and meaningful activity. I wanted to get involved in a volunteer organization and the people that I was going to get involved with made it reasonably clear that it was not the best place for me. That really made me frustrated and depressed… No, I didn't get angry. There is no point in getting angry with people. But I did feel depressed and anytime I feel that, my days of thinking of new things and new ways of doing things are at an end. And that bothers me (Harry). I sympathize with that Thomas because when the senior games came on in Westchester, I was interviewed for a job as a volunteer to be involved with them. I filled out an application with Alzheimer's on it. The interview was really impressive, they said you will be one of the hosts, but somehow they didn't call me back. So with [the next volunteer opportunity] I didn't put the medical conditions. So far, it's excellent. I got my certificate because I was able to answer the questions and do my volunteer work to say good participation (Mike).
My friend, he said, “Should I mention this [diagnosis] to Donnie?” who was a mutual friend. I said, “Oh, that's quite alright.” I said, “Anyone in [local area] that was a friend of mine that you bump into, you can say, “by the way, did you know?” But he wanted to know the parameters too. Who do we tell? Who do we just say we're going to shop? (Angus). Interestingly, while this participant was quite fine having his condition made public, his friend's hesitancy may reflect his lay awareness that disclosing would result in differential treatment to Angus. In addition to who to tell, there was some controversy regarding how to tell people. Within this discussion, the use of humor evoked considerable debate. Specifically, for some, humor was identified as an effective way of lightly conveying information: I'm of the policy of making it not too significant and mix it up with a little bit of levity too. You can say to someone–it may sound stupid–but they should take it easy with me, I've got Alzheimer's. Everybody laughs. Okay. That's another problem solved. So it all seemed to happen quite naturally and if you handle it with a little bit of levity, it makes it a lot easier (Phil).
I had a virtually identical experience. I was following the practice to always tell people I had Alzheimer's. Well the last couple of times, as soon as the Alzheimer's word came out, the interview cooled. I didn't get a phone call back so sometimes now I don't tell people (Tony). Summarizing the discussion and highlighting the quandary associated with disclosing, Louise notes: “Yes, disclosing or not disclosing. Sometimes you have to feel out the people you want to get involved with.” While clear hesitancy around disclosing certainly dominated the group experience, the willingness to consider others' reactions to disclosure as examples of discrimination was not readily accepted by all. Rather, although not questioning the ‘truth’ of the various experiences, some members searched for a less offensive reason for behavior that could be seen as oppressive. For example, one participant tries to rationalize the broker's response to Angus:
Not all felt comfortable with this statement however. Several challenged the use of humor as a strategy, highlighting a double-bind between the ability to laugh at one's self while not minimizing the impact or letting others off the hook. This participant describes the use of humor but links it to the underlying pain: Try not to let it bother you, as much as you can. I keep going back to the golf because that's what I do. And I belong to the club and I used to run men's night for years and years. I knew all the rules. Now they don't ask me about a rule. They don't ask me about money or something. I can't collect money because I can't put “paid” next to the guy's name or something. So it's funny in one sense, and it's kind of disappointing in another.… It's so obvious [that people are assuming incapability] and sometimes I laugh about it. And other times– (Angus).
I think from listening, I think we have to be careful in not lumping that third-party people dealing with the issue of the illness and lumping it with stigma. I don't know if I'm talking about this correctly. When you say your broker is now dealing with your wife, probably the broker is aware of your condition and it's the easiest way of professionally dealing with the present situation. So I don't think that should be called a stigma. It is more like the broker or lawyer–whatever–dealing with the present situation. Your wife as the caregiver is now the person to deal with rather than you, because like with me–I forget. So it's better for them to deal with the wife because you and your wife will be talking about issues, financial and legal interests. And he might be thinking it's better dealing with your wife, bypassing you. But when we hear them talking, we think we're being ostracized or being stigmatized. I don't know (Phil).
The risk of disclosure While participants did recognize that disclosing their diagnosis could be useful, most also highlighted the disclosure process as a set-up for discrimination. My broker–I've been dealing with her for 25 years and she doesn't call me anymore. She calls my wife. For 22 years, she never even talked to my wife once. My wife answered the phone and she always asked for me, even on her investments. As soon as my wife told her–I'm the one who told her, I guess. And the next thing you know, she doesn't–and she doesn't do it on purpose. But she just–that's just the way it is (Angus).
In this example, the first participant attempts to clarify: “If I said to him or her–in this case, it's a her–if I said to her, ‘Oh, by the way. I'd rather you deal more with my wife now and look after her only.’ I didn't say that.” Again, his interpretation is not accepted:
This participant returned repeatedly to his anger that he felt diminished and invisible since his disclosure. He clearly linked his experiences to being stigmatized. He was not alone. For at least half of the participants, there was a belief that once people found out about the diagnosis, they treated you differently: “Once they found out, they're not going to look at you when you tell them you've got Alzheimer's” (Harry). Another highlights the practical ramifications of this differential treatment:
And as I said, to repeat my comment of a few moments ago, I think we're in danger of treating this whole thing a little too seriously in terms of stigma and disclosing it, and that sort of thing because deterioration of mental acuity and forgetting–that sort of thing–is common–really quite common. I have a mother who died at 107 and towards the end she would say, “You know, not being able to remember is not all that bad because I can read the same book over and over again and it's always new.” And that wasn't Alzheimer's. That was just growing old (Phil). 48
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be a leader. And again, this view was challenged by another member:
You have to be able to empower yourself to take charge of the situation because if I met somebody with a newly-diagnosed one, I could tell them that there's a lot of preconceived ideas about Alzheimer's and it's up to you to…–set the facts right. I can even make light–not too much a deep issue about it. You can tell them in a light-hearted way about what it is and what she might want to do or things from me with experience, before I can tell her my experience about it. And that way she would have some ideas of how a person who has been diagnosed before her has dealt with the issues (Mike).
But I can appreciate what you're saying, Phil, but in my case–like I was diagnosed when I was 45. So it wasn't a case of old. So there's other issues and other stigmas and other things. Later, this same participant notes: “Stigma can hurt. It can hurt your feelings.” These exchanges are important because they demonstrate the difficulty that some members had naming experiences as discrimination and/or oppressive. These participants were denied the experience of feeling justifiably angry. Instead, the tendency to discount, or brush off one's feelings, emerged: “But stigma shouldn't–at a point shouldn't bother us.” Significantly, others judged themselves pejoratively for interpreting an act as discriminatory, positioning their response as a sign of personal deficiency.
It also fostered opportunities for community building. I think the other thing too is, I would tell the person that it would be great if they would join a support group because being able to talk about these things does give you more knowledge, more empowerment to be able to go out and tackle the world with the stigma. I think that's important (Louise).
I think while we're disclosing, we're worried about stigma. I think sometimes we tend to make it a bigger problem than it really is. If we send signals when we're telling people that it's a great big disaster–well, they'll treat it as such.
As the group progressed, members became increasingly assertive about the importance of self-disclosing their diagnosis to others. Within the context of self-management, it was seen as an important part of “taking control.”
The danger here then lay in the fact that almost everyone in the group could identify personal situations where someone had responded to their disclosure in ways that could be construed as belittling, discounting and/or devaluing, yet, at least in the beginning of the group process, not all could label the behavior of the other as the problem. Notably, this changed as the group went on and attempts to minimize the hurt of discriminatory responses lessened.
Angus: I think that you need to be aware of it, but you don't want to be worried. Worried isn't right, but not to be overwhelmed by it or strangled by it – like don't let it sort of control you. You control it. Harry: Yeah. This is how it is. Phil: That's right. You control the message. You control how you deal with it in public and how you want to communicate that. Importantly, a shift in perception occurred as the group developed. For example, Phil, who early into the group process discussed his reluctance to disclose, revealed a change of heart toward the end of the group meetings, noting that his practice now was to disclose and that he wished he had started disclosing more openly earlier. An overall message from this group then, and one that became increasingly stronger as members got to know one another, regarded the importance of sharing the diagnosis with others. Summing up one of the discussions, the group facilitator noted: “So it occurs to me when I hear you say that, that while there's this challenge to deal with what people think about dementia and their fears and lack of awareness and education, at the same time, in order for you to manage this disease in the best way possible for your own well-being, you've got to be putting it out there all the time so everybody knows?”
Disclosing: an act of resistance? It all depends on the situation because I do in some presentations talk about going in for a procedure at the hospital and the clerk gave me the form to sign. She said sign it and date it. So I signed it and said, “What's the date?” I don't know what the date is. She laughed. She laughed at me! And said, “Well, you're here so you know what the date is.” And then that was the end of the conversation. And – no, no, no, that will not be acceptable. I mean, I understand what you're saying. But there is that other more sort of bigger example, if you will, where I don't address that with levity. If that clerk knew one hell of a lot better – she was in a hospital. And if she didn't know better, then I was about to teach her (Mike).
Tony: Because unless you're up front telling them, no one will know. Louise: Yeah. That's the only way I was able to do it right from the beginning is telling them, telling them, and having a medical background helped me a lot to be able to do that.
The link between disclosing and discrimination in the everyday lived experience is not surprising. It is consistent with other research (see, for example, Burgener, Buckwalter, Perkhounkova, Liu et al., 2015; Burgener, Buckwalter, Perkhounkova, & Liu, 2015). More unexpected was how the strategic use of self-disclosure to combat stigma was raised by several members:
Clarifying still further the facilitator notes: “One of the things I think I'm hearing is that a program for self-management shouldn't just be geared towards the person with the dementia. It also needs to be geared towards changing the community and changing society and we're just scratching the surface.” And the immediate response from one of the participants: “Yes, we need society to facilitate this.”
…being able to talk about these things does give you more knowledge, more empowerment to be able to go out and tackle the world with the stigma. I think that's important (Mike). These participants described the potential to use self-disclosure as a means of empowerment of self and others with dementia.
Creating a place to speak
…you take control, so you're basically taking control of your diagnosis and in freely talking about it, plus the fact that you get to educate people because part of the stigma is the sort of unknown (Louise).
All three advisory groups talked about being treated differently once people found out their diagnosis. However, the naming of this treatment as stigma emerged spontaneously and much more strongly in this group, than it did in the other two advisory groups. When asked to consider this, there was unanimous agreement by the members of this group, that they had felt freer to articulate their experience as discrimination and stigma, at least partially because there were no care partners in it.
Notes another participant: “Yes, that's what we're here for aren't we? To make people understand?” The importance of being comfortable about disclosing emerged repeatedly, especially with those who had taken on more active advocacy roles. In addition to the personal gain of understanding, disclosing fostered education, advocacy and the opportunity to mentor others–to 49
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to revelations about their diagnosis. Still, drawing attention to this aspect of day-to-day practice in life with dementia is important for two reasons. First, since it was the disclosure of the diagnosis and not the functional changes affiliated with the dementia that was linked to the experience of stigma, this study illustrates clearly how society is accountable for contributing to the hardships of those with dementia. This study highlights the ongoing insult of sharing this diagnosis. This was at both the individual level–for example, friends and family treated the person differently–and at a systemic level, with participants' stories also demonstrating how diagnostic disclosure could serve to limit opportunities for active participation, growth and finding purpose. Almost all of the participants had examples in which the decision to disclose their diagnosis had resulted in them being denied an opportunity to contribute to society in a meaningful way, for example by taking up volunteer work for which they were adequately qualified. In other words, their stories highlighted societal practices that challenge their essential citizenship. Second, while the study highlights how disclosure can challenge the rights of social citizenship, it also highlights the use of disclosure as a means for claiming active citizenship. Similar to findings by Birt, Poland, Csipke, and Charlesworth (2017), the study demonstrates that people used diagnostic disclosure as a tool for promoting the adaptations they needed in order to remain active in social networks. Hence, this study supports the point that disclosure can help people with dementia “manage” their dementia by helping others modify expectations and provide support. However, the findings also extend the discussion to recognize that disclosure can be a useful strategy for both education and empowerment, a powerful tool for resisting stigma and challenging discriminatory practices. Link and Phelan (2001) identify two principles in considering how to really change stigma. The first is that any approach must be multifaceted and multilevel. It needs to be multifaceted to address the many mechanisms that can lead to disadvantaged outcomes, and it needs to be multilevel to address issues of both individual and structural discrimination. But second, and most important, an approach to change must ultimately address the fundamental cause of stigma by challenging deeply held attitudes and beliefs of powerful groups that lead to labeling, stereotyping, setting apart, devaluing, and discriminating, or it must change circumstances so as to limit the power of such groups to make their cognitions the dominant ones. When a person with dementia speaks out and owns his or her diagnosis, that person is both educating but importantly also challenging deeply held beliefs by society-at-large that link dementia to global incapacity because that person is clearly modeling a contrast. While it is not the individual responsibility of the person with dementia to overcome dementia-related stigma–it is a societal responsibility–owning one's diagnosis has been raised as an important step toward combating internalized stigma and promoting personal empowerment (see for example Corrigan & Rao, 2012).
I can only think that–and it would be in my case and I've seen it over and over and over again–is that when you are just people with dementia together, I think you come out feeling stronger and more confident and able to deal with what's happening to you, rather than having the crutch of your spouse (Harry). Another expanded upon this: “I think if caregivers get into that picture, for me, I think it would be something of an intrusion.” There were many reasons that a sense of silencing occurred. Some described a sense of losing voice: “We're patient with each other. But with the caregivers in it as well–they may start, “I'll help you along in conversation” or “What my husband's really meaning to say is–”. Importantly, members were afraid of saying something that might hurt their care partner. This was mostly because they recognized the care and good intentions of their partner and were loathe to hurt them, but pragmatically, there was also the real recognition that they could not afford to offend their partner because of their dependence on that person. “Sometimes we just clam up because we're afraid that if we say something, then they won't help us” (Harry). Irrespective of their reason, all were clear that the ability to name and talk about stigma would not have been as accessible had family members also participated in the same group. Unanimously, they advocated for the importance of having group opportunities that did not include their partners if they were to be empowered to speak. Discussion This study supports the importance of recognizing that stigma is a critical part of the lived experience of dementia from the perspective of those living with the diagnosis. The experience of stigma emerged spontaneously in open conversation and represented an ongoing theme that participants returned to repeatedly when discussing, over a sixteen month period, their experiences living with dementia. All could provide examples of discriminatory treatment, although for several, at least initially, there was some reluctance to name these experiences as discrimination or rooted in stigma. The participants' stories suggest that not naming the stigma could be problematic because it was then too easy to internalize discriminatory treatment as a personal issue. This lends insight into how people with dementia may come to unintentionally limit themselves, reinforcing what Goffman (1963) recognizes as a “split between self-demands and self” (p.18). Failure to name stigma also denied persons with dementia the legitimate right to be angry when confronted with these discriminatory practices. Thus, the importance of ensuring a social context where stigma can be explicitly named and discussed is identified, reinforcing the classic feminist slogan: the personal is political. Interestingly however, the study illustrates that the context for facilitating discussions about stigma must be considered. In particular, the potential of care partners to inadvertently and unintentionally silence is important (see also, Wiersma et al., 2016). In addition to lending insight into the experience of stigma from the perspective of persons with dementia, a valuable contribution of this study is that it also draws attention to the importance of diagnostic disclosure as an every-day practice that shapes this lived experience of dementia. Participants were confronted daily with what to say to others about their diagnosis and how to say it. This study explores this process from the perspective of those with the diagnosis: it lends insight into how people with dementia choose, or don't choose, to disclose their diagnosis to others. An important finding is that the choice to disclose is strategic and well-considered, reflecting active citizenship and confirming a level of awareness and insight (Clare, 2010). The importance of this disclosing process really shouldn't be a surprise: it is recognized that diagnostic labels serve as cues that activate stigma and stereotypes (Garand, Lingler, Conner, & Dew, 2009) and so it's not unexpected that participants linked discrimination from others
Conclusion This study highlights the importance of fostering discussions around the disclosure of the diagnosis to others by the person with dementia as an important strategy for depersonalizing and politicizing for two reasons. First, it allows the naming and normalizing of discriminatory experiences that routinely follow disclosure. This prevents individuals from discounting their experiences or internalizing blame for any differential treatment. Second, it provides a clear strategy of resistance, recognizing the expertise of the person with dementia to educate and challenge while also facilitating linkages with other persons with dementia. Bartlett (2014), in her research with dementia self-advocates, identifies these linkages between people with dementia as providing a structure for the development of a subculture that opposes discriminatory and oppressive views and practice, making them beneficial at both the individual and societal level. Diagnostic disclosure is at the 50
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heart of these connections.
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