Article

Dementia: The need for attitudinal change

Dementia 2014, Vol. 13(4) 483–497 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213478241 dem.sagepub.com

Grace O’Sullivan, Clare Hocking and Deb Spence Auckland University of Technology, New Zealand

Abstract Objective: To undertake a systematic inquiry into the experience of living with dementia in the community. Design: Action research, underpinned by critical hermeneutics, brought together action and reflection, theory and practice to generate knowledge. Data were gathered by interviews and observations in participants’ homes, and focus group discussions in community settings. Participants: Eleven people with mild to moderate dementia and their primary caregiver aged 59–84, living in Auckland, New Zealand. Results: The findings reveal a conflict between living positively with dementia, and enduring the negative attitudes that typify the dominant social discourse. The central argument arising from the findings is the significance of personal attitudes. Conclusions: Implications for policy makers, health care providers, and caregivers highlight the need to change the ways in which dementia is perceived. The pursuit of positive attitudes will do much to change social perceptions and enable people with dementia to live with a sense of well-being. Keywords action research, attitudes, dementia, prejudice, stigma

For many years, pervasive beliefs about dementia have been influenced by the negative aspects of Alzheimer’s and similar diseases (Bryden, 2005; Sabat, 2011; Taylor, 2007). Classifying dementia as a disease has had an important impact on the way society views people with dementia since knowledge of the trajectory of dementia has been dominated by a biomedical approach (Sabat, 2011). The medical construction of dementia is the basis of excess disability and unequal relations that have marginalized people with dementia

Corresponding author: Grace O’Sullivan, Division of Rehabilitation and Occupation Studies, Faculty of Health & Environmental Sciences, Auckland University of Technology, Private Bag 92 006, Auckland 1142, New Zealand. Email: [email protected]

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(Sabat, 2003; Whitehouse & George, 2008). Furthermore, since medical science has failed to find a cause and/or cure for dementia, it is deemed to be an insurmountable problem. Even though the first case of dementia was written up in the early 1900s (Shenk, 2001), it was not until the mid-1970s, when demographic trends towards an aging population became a concern, that the financial significance of dementia brought closer attention to the condition (Wilkinson, 2002). This rise in interest was reflected in a corresponding increase in dementia research, predominately focused on the cause of, or cure for, the disease. However, although scientists now know a great deal more about how the brain deteriorates and have some ideas on how to slow decline, research into the challenges people with dementia live with has long been underfinanced. The political will to address this health issue has been impeded by a lack of understanding of the anomalies of dementia. There is some recent evidence that the functional ability and well-being of people with mild to moderate dementia can be maintained (Graff et al., 2008; Health Scotland, 2008; MacRae, 2008; Sabat & Gladstone, 2010). To enable people to preserve those abilities, it is necessary to understand the process of dementia and to provide effective help. Memory impairment does not affect the whole person. For example, if a person cannot remember details of an event then they cannot relate to that event. Still, this alone does not render the person incapable of doing other things like making decisions about a specific course of action or taking part in familiar, and new, activities (Banerjee, 2005; Phinney, 2008). While the notion of disability cannot be denied, it is important to recognize that people with dementia do retain many abilities (Sabat & Gladstone, 2010). Nevertheless, what is commonly known about living with dementia is found in discourse related to the care of people with dementia. It is reported to be an ‘increased burden for family supporters’ (Graff et al., 2006, p. 2) as families have to balance the needs of the person with their own needs. Despite the commonly held opinion that caring for someone with dementia is more difficult and oppressive than caring for someone with other chronic conditions, there is little evidence to verify that belief (Ory, Yee, Tennstedt, & Schultz, 2000). Indeed, studies have consistently shown that caring for people who develop a disability, be it a stroke or a traumatic brain injury, has a physical and emotional toll (Zarit & Zarit, 2008). The pervasive tendency to focus on the negative outcomes of dementia has effectively reinforced the stigma associated with the condition (Hampson, 2009; Sabat, 2011). According to Friedell (2003, p. 2), when ‘the psychological trauma of a catastrophic illness is combined with negative or patronising attitudes (or fear of those attitudes, or both)’ excess disability is inevitable. In light of this claim, and others like it (De Baggio, 2002; Hughes, Louw, & Sabat, 2006; Post, 2000; Sabat, 2011; Taylor, 2007), this paper explores the influence of attitudes in more depth. In keeping with the call for inclusion (Banerjee, 2005; Taylor, 2007; Wilkinson, 2002) the research was designed to learn from people who live with dementia in the community, and their family, about their experience.

Methods This article reports findings from an action research project undertaken to explore the daily activities of people with dementia. Although flexible, action research is a rigorous and

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demanding approach to generating knowledge (McNiff & Whitehead, 2006; Reason & Bradbury, 2006; Winter & Munn-Giddings, 2001). Informed by Ko¨gler’s (1999) critical hermeneutics, the aim was to create a conceptual and methodological space in which a process of critical interpretation could effectively be achieved. The values underpinning the study align with the ‘fundamental human right of persons to contribute to decisions which affect them’ (Reason, 1998, p. 2). The goal was to explore participants’ perceptions of living with dementia with a view to understanding influences that shape their daily life. The study was approved by the Northern Y Regional Ethics Committee (NTY/05/ 08/054) on 10 October 2005, Auckland University of Technology’s Ethics Committee (AUTEC 05/213) on 21 November 2005, and the Auckland District Health Board (A þ 3504) on 6 June 2006.

Recruitment The original intent was to have local organizations and/or service providers such as the Needs Assessment and Social Care (NASC) team, who agreed to support the research, introduce the study to people with a diagnosis of dementia and their family member, and give them an information sheet outlining the purpose of the study. The plan was to follow up with a phone call, provided permission had been given. However, 4 months after receiving ethical approval, only two people with dementia had been referred. The level of cognitive decline in one person was such that he was not a suitable candidate and the family member of the other person misunderstood the purpose of the research and, once informed, chose not to participate. A subsequent opportunity to explain the study to staff at a local branch of Alzheimer’s New Zealand (NZ) proved to be more fruitful and they agreed to support the study. This brought an immediate response from three couples, Ron and Ann, Greg and Fiona, and Mick and Marianne (pseudonyms) who agreed to become participants. A call to a different branch of Alzheimer’s NZ brought a referral for Rita and Bernard while another couple, Scott and Polly, were recruited through word of mouth. Other service providers such as Age Concern (a community-based service for older people) were approached and given their support, a new application was sent to the Regional Ethics Committee seeking permission to add the new service providers to the original application. Approval was received on 8 June 2006. Despite an initial interest several service providers advised they had no eligible candidates although at least three couples, who eventually became participants through word of mouth, were known to these organizations. Over the next few months community groups such as Rotary, Probus, and Carers NZ were approached seeking opportunities to talk about the research with a view towards recruiting participants. This involved a third application to the Regional Ethics Committee to include these groups in the local organizations criteria. Invariably presentations were greeted with great interest and some people wanted help and advice, but they did not want to join the research. It took 2 years to recruit 11 couples; the additional six couples being referred through word of mouth. Data gathering from the first participants was ongoing during this time and, as new people joined the study similar stories and concerns began to be repeated. Talk of social stigma, loss, fear of the future, and isolation were common.

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Participants The participants, who included eleven people with mild to moderate cognitive decline and their caregiver, were recruited to engage in dialogue with the researcher, and to take part in focus group discussions. Mild to moderate dementia was stipulated to offset ethical concerns about the stability of the individual perspective and the accuracy of the information provided by participants. Willingness to continue participating was monitored during the process of data collection. Variation in demographic characteristics such as age, race, and gender, facilitated the collection of a range of perspectives.

Data collection and analysis Data collection and analysis, which were reciprocally integrated, initially focused on gathering and interpreting data in a small group context (the person with dementia, their primary caregiver, and the researcher). Initial meetings, which lasted between 1 and 2 hours, took place in participants’ homes in the community. Congruent with action research and critical hermeneutics, the dialogic process of gathering data included the circumstances through which meaning was constructed, to determine the influences shaping participants’ understanding (Ko¨gler, 1999). A semi-structured list of questions guided the process and probing questions were used to facilitate exploration of each couple’s day-to-day experiences. Participants were encouraged to contribute to knowledge development at the end of each conversation, when they were asked about other topics that needed to be addressed. When data reached information redundancy (saturation), participants were invited to take part in a focus group to discuss the preliminary findings. This is consistent with the process of reflection and action that is central to action research (Reason & Bradbury, 2006). Critical hermeneutic data analysis had several stages, each of which was informed sequentially by the action research cycle. As the number of participants grew, similarities and differences in the data became apparent and the fixed ideas and social structures that influenced the participants’ daily lives became increasingly evident. Initial codes were noted on the transcripts and interpretations were discussed with participants at the next meeting to make sure the analysis was accurate. The concept of stigma permeated the transcripts and thus became one of the first codes. The resulting social isolation was another. The reflexive, cyclical process of analysis included reading and rereading the transcripts, reflecting on the initial codes, and working across transcripts to see if new insights were applicable to other participants. The codes were grouped and regrouped into categories before becoming initial themes. Reflecting on the codes and discussing them with participants, the first stage of analysis, led to the connection between stigma and a myriad of attitudes. The second stage of analysis helped to answer questions regarding the adequacy of the categories. Ideas were mind mapped and linked to philosophy, the topic, and the research question. For instance, stigma ! other people’s perception ! social humiliation ! stories passed from one person to another ! hopelessness of the biomedical approach ! fear and prejudice ! negative language ! critical hermeneutics ! what needs to change? ! attitudes and approaches ! social / personal ! impact on daily activities. During the third stage of analysis, literature was reread to find different ways of thinking about the data. A qualitative software program was not used because engaging the participants was central to the analysis.

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Results Of the 11 couples recruited, 8 were married, 1 couple was in a long-term relationship, 1 couple was a mother and daughter, and 1 was a mother and son relationship. There were 6 male and 5 female participants with dementia. Five had young onset, and 6 were older onset. Time since diagnosis ranged from 15 months to 5 years. Two participants lived alone, although one had her home on the same section of land as her daughter. Both participants living alone had daily contact with family. Only 1 of the 22 participants was Maori, 5 were born in Britain, and 1 in Europe. The remaining 15 were New Zealanders. The participants reported good physical health in their lifetime. Some were highly educated, others were not. Two had word-finding difficulties or would lose their train of thought when interrupted, but could make themselves understood and engage in conversation. All were conscious of the stigma associated with dementia and many had experienced a loss of social connectedness following diagnosis.

The pervasiveness of stigma When gathering data, the notion of stigma came up in almost every conversation. Sometimes it was in response to a question and sometimes it was unintentionally provoked. For example, during the first interview with Scott, the purpose of the research was revisited and when asked if he was comfortable talking about his diagnosis Scott said ‘of course - no problem.’ Yet as the conversation progressed it became obvious that hearing the word dementia irritated him. Eventually he said in no uncertain terms that he did not like the ‘label.’ When asked why he disliked the word dementia he said: ‘It’s got this stigma to it.’ Considered a mark of disgrace associated with a particular circumstance, quality, or person (Collins Concise Dictionary, 2001), stigma is manifest in words like ‘a living death’ or ‘out of their mind’ (Zeisal, 2005). Such labels have a profound effect on social perceptions of what it means to have dementia, resulting in fear of the unknown and shame at the loss of social identity (Sabat, 2001). Of equal significance, shame is variously described as an emotion, a state, or a condition (Collins Concise Dictionary, 2001). A sense of shame usually occurs as a result of any situation of embarrassment, dishonor, disgrace, inadequacy, humiliation, or annoyance resulting from a violation of cultural or social values (Oxford English Dictionary, 2008). This is particularly relevant because cognitive decline is commonly perceived to be socially abhorrent (MacRae, 2008). Whereas people in society readily understand and accept the effects of physical health problems they do not have the same empathy for those with cognitive or mental health problems. Many years ago John Dewey (1859–1952) stated: ‘People adopt the values and perspectives of their social groups in such a way that these factors come to shape their views of the world’ (cited in Kincheloe & McLaren, 2000, p. 287). If people accept as true, socially constructed beliefs [about dementia] then their actions and attitudes will be influenced by those beliefs (Ko¨gler, 1999). Scott was not the only participant who voiced concern over the word dementia; other participants were equally sensitive. Some said they did not tell people because it was no one else’s business while others feared a change in attitude. During a focus group meeting when

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initial codes such as stigma, isolation, loss of confidence and loneliness were under discussion, the participants were asked about the impact of social stigma: Grace: We talked about social stigma and I just wonder how much impact that has on people. Dutch: Oh I think it has a tremendous one. Grace: In what way? Mick: You don’t really know how people will react. Grace: Do you tell people? Liz: Sometimes. Rita: Depends. Mick: Hmmm.

Expanding on these responses Bernard reported that when Rita was diagnosed with probable Alzheimer’s, out of concern for her self respect he advised that ‘Nobody knows about this, just you and me, and that’s how it will stay.’ This continued until Bernard realized they were underpinning the idea of dementia as something to be ashamed of: Rita chooses not to speak of it, rather like cancer was 50 years ago. It’s got a stigma to it, Alzheimer’s, and it shouldn’t have. It is a sickness just as cancer is a sickness and you don’t have to be ashamed to have a sickness.

Rita claimed to be unconcerned about what other people thought nonetheless she argued: ‘I’m very open with the family. . . I mean that’s a fact of life and you can’t do anything about it can you? But I wouldn’t offer this information, why should I offer it to outsiders?’ Upon being asked if she was sensitive about the diagnosis Rita replied: ‘Oh, I’m sensitive outside the family. . .I wouldn’t be wanting to give this information out.’ When Bernard commented that people tend to feel sorry for someone with Alzheimer’s disease Rita emphatically responded: Oh I wouldn’t like that. . .I mean at this stage I’m not terribly upset about it but it could get worse which I believe it does so, well we’ll deal with it when it does. I mean you don’t like to think about it and what am I going to be like, you know?

This point of view was endorsed by Greg who, according to his wife Fiona, was also determined not to discuss the diagnosis: ‘He refused to even consider the diagnosis let alone talk about it.’ In reply Greg stated: There’s a false perception by the public at large, who think once you’ve got dementia you’re no longer part of society, you know. Fiona: The label. We’ve had a couple of friends we’ve known for a long time. . . they actually popped in for the first time in years and they said ‘Greg is really lucid’ and I said ‘Yeah well he’s the same Greg’. Grace: Shame on you Greg. [Laughter] Fiona: [friend] had a really long talk to Greg and she said to me, ‘Is there anything really wrong with him?’ They hear that word dementia and they think of someone in the very final stages of dementia. Greg: That’s the attitude.

The data clearly indicates that the participants with dementia were very conscious of the stigma associated with dementia and consequently wanted to hide their health problem by not telling others and/or denying anything is wrong. It is easier to pretend that all is well than to challenge the stigma of dementia (Bryden, 2005; Taylor, 2007).

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Maintaining a positive attitude The concept of attitudes, which also pervaded the data, became an overarching theme through a cyclical analytic process of agreement. Focus group participants decided that a positive attitude from the person with dementia was ‘crucial.’ Rita: I think it’s tremendously important as far as I’m concerned. I mean. . . I know that if I had worried about it, it would have been a different circumstance in my life altogether. But I don’t. . . I just get on with life. But you could make it an issue without really meaning to, I would imagine. Liz: I do too. Moses: And I think some of it goes back to your attitude earlier in life. Like if you’ve been a positive person and you have a positive attitude to life then that will help you through this process.

People’s responses to a diagnosis of dementia are invariably influenced by personal characteristics. When we come into this world, we are known only as the child of our parents. With the passage of time we develop a personality through the things we do, the decisions we make, and individual traits including our personal attitudes, values and beliefs. Defined as a pattern of thinking (Mulholland, 2005), personal beliefs and attitudes determine how people feel and thus how they will cope with life’s challenges. Addressing the question of challenge with participants provided another important insight. In addition to other people’s attitudes, it became apparent that the influence of personal attitudes is significant, yet it is overlooked. This is important because a positive attitude from the person with dementia, as well as their carer, can help to maintain a sense of life satisfaction, self respect and confidence. For instance, Rita’s attitude underpins her confidence: ‘I think the personal attitudes of the person are important. You know, if you accept it and that’s fine, but it doesn’t really have to walk with you every minute.’ Scott’s determination helped him maintain a sense of optimism: In reply to the greeting ‘How are you?’ he would always respond ‘Physically I am well, I’m doing okay and I hope that will go on.’ Conversely, Mick’s nonchalant attitude made him vulnerable. In response to a question about life’s challenges Mick stated: ‘I keep the paper up. . . I like a quiet life, so if it’s easy I’ll go that way.’ Clearly, hiding from dementia is a risky business. If left unchallenged it will gradually affect every avenue of daily life.

The impact of patronizing attitudes To return to other people’s attitude, in exploring the personal experience of living with dementia, it became apparent that people with dementia are acutely aware when they are being patronized. In the guise of being kind, other people tend to treat people with dementia like children. Participants were aware of being belittled and interpreted good intentions as pity or condescension. Rita explained: People are so kind to you. They say ‘Are you alright? Now are you sure about this or can I help you with that? Let me do it’. This is the attitude. They wouldn’t say that if it was you Grace, you’d just be left to get on. You know, people don’t really see clearly enough. They just see a person [with dementia] and they just make an assumption about that person, and that’s it. I think, you know I’m very sensitive and I pick up on things very quickly, and if I feel

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patronized in any way at all I hate it, I can’t stand it. People with dementia are very aware of this sort of thing. If you feel you are being undermined or rubbished, it is soul destroying.

Equally, Liz reported sensing a difference in the way friends responded to her: ‘Yes, I do think friends are a bit iffy about me now.’ Incidentally, Liz had also previously acknowledged that she does not always tell people she has dementia: ‘Well I don’t tell everyone. . ., only ones that I’d like to know.’ In response to a question about why she told some people and not others Liz alleged: ‘I think once they know that you have Alzheimer’s they are a little bit like that to you’ (making a face). In answering the question: ‘What would you like people to understand about dementia?’ Liz acknowledged her own prejudice towards people with dementia: That I’m still me. . . I’m not so bad. Nobody wants to have it do they? An’ so they are all sort of. . .I think people are a little bit frightened because they don’t know what to expect. They think it’s, you’re going to be crazy or you know, stupid. Well I always did. You know when I heard someone had Alzheimer’s, I’d think ‘Oh God’ you know?

Thus, the combination of stigma and patronizing attitudes severely affects the confidence of people with dementia and undermines their abilities. Most people with dementia know their abilities are declining, and loss of confidence is one of the more debilitating factors they have to deal because it causes frustration, anger, grief and fear. Ultimately it impacts on their behavior and leads to withdrawal from daily activities and depression (MacRae, 2008). According to Rita: ‘When you lose your self confidence, you’ve lost yourself.’ Reflecting on the loss of self confidence highlighted the need to give people with dementia hope for the future. A positive attitude to life relies on having faith in the future. When faith is lost, hope is lost, because without hope people have nothing to strive for. These findings are endorsed by the philosophies espoused by Ko¨gler (1999). That is to say, grasping the social conditions, and the language, under which stigma has come into being is vital to expose the link between hidden background knowledge that sustains the prejudices and the prejudgments which shape personal and social attitudes towards living with dementia.

Discussion ‘Attitude is a little thing that makes a big difference’ (attributed to Winston Churchill, 1874– 1965, cited in Ballon & Skinner, 2008, p. 218). The power of attitudes came together with a more profound understanding of the philosophy underpinning this study because the philosophy served to highlight the prevalence of negativity in the language used in societal dialogue about dementia. Upon reflection, it became clear that although some participants spoke positively about living with dementia, in reality, they had unconsciously internalized the negative stereotype. In other words, the stigma that pervades social discourse reflexively affects the attitude and actions of people with dementia and their carers. Given the diversity of personal attitudes, it cannot be assumed that everyone with a diagnosis of dementia will respond in the same way. People are grouped together under the label – yet it is well known that the progression of dementia is largely unpredictable. How and what symptoms will develop depends on the area of the brain affected as well as personal attitudes, circumstances, characteristics, and opportunities; not everyone will react the same.

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These factors highlight the ambiguities between people with dementia and so treating everyone the same is not constructive. We are well warned that the incidence of dementia will increase; there is no long-term treatment available so there is a dire need to eliminate unhelpful attitudes that disadvantage people with dementia and diminish their hopes for the future. From the time of diagnosis people with dementia become vulnerable to a myriad of attitudes. In conjunction with their own pre-morbid outlook of life, the attitudes of family, friends, and other people in society have a profound effect on how they navigate daily life. Despite recent research which offers insights into how people can construct meaningful lives regardless of the challenges cognitive decline presents, it is generally assumed that if a person has Alzheimer’s, or a similar disease, their capacity to function is limited (MacRae, 2008). Consequently, people with dementia construct their daily life against a background of prejudice that is comprised of attitudes which cause, support, and/or justify discrimination. According to Farley (2000), in the past the word prejudice referred to judging people negatively because of their race, religion, or class. Today it is more commonly used to refer to a fixed, unsociable attitude towards someone, without fully knowing the person or their circumstances. It can also be used collectively and is commonly referred to as ‘people’s thinking: attitudes and beliefs which tend to favour one group over another, or which cause unequal treatment’ (Farley, 2000, p. 9). Furthermore, prejudice can be ‘overt and very obvious or it can be subtle and indirect’ (Farley, 2000, p. 9). Subtle prejudice is defined as the stigmatization that results from assuming all people who belong to a particular group are alike, such as people with dementia. Thus, it is argued that prejudice underpins the social stigma associated with dementia. To say people with dementia and their family are disadvantaged by this stigma is underestimating the significance of the issue, because it influences their whole way of life. Fear of dementia is understandable since it is reported to be characterized by significant impairment, behavioral changes, and a slow functional decline (American Psychiatric Association, 2000). The sense of shame associated with dementia has long been documented (Kitwood & Bredin, 1992). Furthermore, with the emphasis on disease, it is assumed that when people are diagnosed with dementia, virtually nothing can be done to prevent decline (Banerjee, 2005; Health Scotland, 2008). This sense of hopelessness is epitomized in an article written nearly 30 years ago which claimed ‘dementia is a form of dying’ and further that ‘the task of the therapist, care-giver, or companion of the dementing person is to help in the dying process’ (Symonds, 1981, p. 1709). The view that dementia is ‘a death that leaves the body behind’ (Kitwood, 1997, p. 3) is still commonly accepted in society and typifies the negative attitudes surrounding dementia. People with dementia may try to ignore other people’s attitude, but this research reveals that many unwittingly internalize the stereotype. This explains why people become anxious, depressed, and withdrawn because social understandings of dementia have been shaped by discourse that suggests they will lose all mental faculties (Hughes et al., 2006; Taylor, 2007). It is vital to understand the impact of these beliefs, and to work towards changing the attitudes that are borne in them. As the research findings show, such beliefs trigger negative responses from both people with dementia and others. For instance, with hindsight it seems that the difficulties with recruitment may have derived from the negative stereotypes that prevail in society. Whereas service providers may have felt they were protecting a vulnerable

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population, equally they were unwittingly contributing to the marginalization of people with dementia. From a critical hermeneutic perspective, this would be seen as a structured and structuring influence on the symbolic assumptions that are tied to the social stigma around dementia (Ko¨gler, 1999). In reality, pessimistic attitudes have become a self-fulfilling prophesy (Sabat & Gladstone, 2010; Whitehouse & George, 2008) because Western societies value people who are competent, capable, and perceived to be independent. People with dementia cannot live up to that expectation, so their confidence is eroded to the point where they stop trying (Zygola, 1999). In keeping with Ko¨gler’s (1999) philosophy of critical hermeneutics and the unspoken understanding of a diagnosis, it is essential to pay attention to the language used to talk about dementia.

The power of language Language plays a key role in the creation of attitudes and social practices. Indeed, language is central to the development of social reality, including how people with dementia are perceived. For instance, readers of this paper are subconsciously using language to understand its message, so language is a taken-for-granted means of relating to others. Most of what we learn in life, we learn through language and regardless of whether it comes from other people, from books, or from the media, what we learn is always influenced by someone else’s opinion (Gadamer, 1976; Habermas, 1984). Over the years, stories about dementia have accumulated because it was poorly understood, yet in these days of greater enlightenment those stories are still given credence. There is a sense that stories about dementia are harmless (Hughes, Louw, & Sabat, 2006) because some form of cognitive decline is thought to be inevitable in older age. However, as this study has shown, words, labels, and attitudes have a profound effect on both people with dementia and societal understandings. Consequently, the language associated with dementia can imprison people with ideas of who they are and what they do. A case in point, Bernard unconsciously referred to Rita as ‘the patient.’ The word patient commonly assumes a person is in hospital or under medical care because they need medical treatment. Yet at the time Rita was not receiving medical intervention and furthermore, she was living, and functioning, in her own home in the community. Therefore, it is simply wrong to refer to her as a patient. Essentially, the language we use helps us to understand the way things are in the world and so language is often thought to be neutral. For instance, the idea of dementia as an illness and/or disease is completely taken for granted because it is deeply fixed in our language system. Yet dementia is not an illness; it is a syndrome, or a set of symptoms that result from a large group of disorders that cause a progressive decline in function. So, whereas language demonstrates a vital social ability, the interpretation of language does not always define reality. A key driver in the problem of dementia-related language is the way in which it is reported. For example, during a recent fund raising venture an article in a local paper (Times Advertiser, n.d.) told the story of a woman newly diagnosed with Alzheimer’s disease, a dementia ‘sufferer’. It was reported that she used to be an intelligent, competent woman and yet now, some days she cannot remember her own name. The story was not only absurd; it was insensitive because it misrepresented both the woman and other people with dementia. People with mild to moderate cognitive decline do not struggle to remember their name.

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Publishing such stories reinforces prejudice and maintains stigma by shaping social understandings of dementia and those ideas, right or wrong, influence attitudes. So, it is crucial to understand how language and stories influence attitudes that give rise to prejudices and stigma (Gadamer, 1976; Habermas, 1984) because ultimately they impact negatively on the lives of people with dementia and their family. People with dementia have the right to live life to the best of their abilities and negative attitudes deny that right. Yes, decline may occur, and the day may come when additional care is needed but that should not be taken for granted. The majority of people with a chronic condition will deteriorate so why focus on the negative aspects of dementia by assuming the end result.

Hope for the future The notion of hope has been mentioned several times in this paper. Referring to time spent in a prisoner-of-war camp, Frankl (1964, p. 65) stated ‘Everything can be taken from a man but one thing: the last of the human freedoms - to choose one’s attitude in any given set of circumstances’. Similarly, Mulholland (2005, p. 20) stated ‘It is not what happens to you that is the problem, it’s your attitude to it that’s important’. Whereas Frankl and others in his position at the time could, albeit tentatively, hope for a better future, the participants in this study revealed a wariness of the stigmatizing attitudes embedded in society. Philosophically, according to Ko¨gler’s (1999), one person’s power over another is essentially determined and made effective through social practices. Furthermore he stated that ‘What makes power hold good, what makes it accepted, is simply the fact that it doesn’t only weigh on us as a force. . ., but that it traverses and produces things, it forms knowledge, [and] produces discourse’ (p. 99). This theory reinforces the argument that the effects of dementia can be reduced or aggravated, depending on the approach of others. When considering the nature of social interactions we come to understand that other people’s attitude will have a positive and/or negative effect on the subjective experience of dementia. For instance, the degree to which a person can display intact cognitive abilities, their ability to meet the demands of everyday life, the quality of the person’s interactions with others all influence their capacity to find meaning in every day (Sabat, 2008). Changing attitudes towards people with dementia will go some way towards ensuring that they can live life in a way that enables them to be the best that they can be. This argument is supported by Kemmis (2010) who advocated that changing historical attitudes is essential if people are to live sustainably. For too many years, persistent beliefs have been influenced by negative reports of Alzheimer’s and similar diseases (Sabat & Gladstone, 2010; Taylor, 2007; Whitehouse & George, 2008). While the inevitability of dementia is the one certain thing for all people who have symptoms, it is attitudes that provide a bridge between the positive and negative aspects of the experience of living with dementia.

Strengths and limitations The participants are the significant strength of this study. Working with people with mild to moderate dementia is a relatively new practice and one that is thought to be risky, given their prognosis of cognitive decline. All of the participants in this research contributed to the data, and many played an important role in the analysis to ensure the findings were grounded in their experience. Participant involvement was maintained over a period of 3 to 4 years through consultation and collaboration.

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All of the participants appeared to be reasonably well supported by at least one family member. Family support can have a significant impact on the experience of living with dementia therefore it must be acknowledged that the voices of people who do not have that advantage may not be represented. Similarly, all of the participants, with the exception of one, were affiliated with Western European culture. People from Maori, the Pacific Islands and/or Asian culture, who have different ways of living, may have a different experience. This study does not suggest that their experience would be the same; rather their views should be captured to broaden understandings.

Conclusion Dementia is not necessarily something to be afraid of; it is how we imagine it and what we make of it that is intimidating. We must all assume responsibility for changing attitudes because if we wait for knowledge and understanding shaped solely by medical science then we are restricting people with dementia to a narrow vision of hope for the future. Despite efforts to focus on the person and not the disease (Banerjee, 2005; Kitwood, 1997), thinking still tends to look for medical intervention (Whitehouse & George, 2008). Although progress has been made, medical science has thus far failed to overcome the challenge of dementia. It is time to look beyond medication and to consider ways of facilitating a life worth living for people with dementia and their family. If dementia is simply equated with disease and management, rather than a combination of physical, mental, social, and spiritual well-being, then people with dementia are confined to a medical interpretation of health. Alternatively, by examining other aspects of health, including attitudes and approaches, people with dementia can be supported in the richest, deepest, and most meaningful way. Tread softly . . . For you tread on my dreams (W. B. Yeats, 1865–1939). This quote from Yeats serves to remind us that people with dementia have a right to have hope and to dream of living a satisfying and healthy life. Acknowledgment I would like to pay tribute to the participants in this study, who invited me into their homes and willingly gave their time and knowledge, trusting that the information they shared would be used to help other people with dementia to live well. Without their involvement, cooperation, reflections, constructive criticism and feedback, this research would not have been possible. The research was completed for a Doctorate of Philosophy, under the auspices of Auckland University of Technology.

Funding The author(s) received no financial support for the research and/or authorship of this article.

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Grace O’Sullivan recently completed a PhD, which explored the experience of living with cognitive decline. Her research interests focus on people’s right to live every day to the best of their ability regardless of disability, and the potential of rehabilitation for people with mild to moderate cognitive decline. Grace’s practice experience is in the community and in residential care. Previous publications focus on positive ageing. Clare Hocking is a Professor of Occupational Science and Therapy at the Faculty of Health and Environmental Sciences in the Auckland University of Technology (New Zealand) where she has taught in the BHSc(OT) and MHSc programmes since 1990. She is the Executive Editor of the Journal of Occupational Science.

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Deb Spence is the Joint Head of Nursing at the Faculty of Health and Environmental Sciences in the Auckland University of Technology (New Zealand). She teaches Masters and Doctoral students from a variety of health professions and researches in the areas of education and advanced practice.

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Dementia: The need for attitudinal change.

To undertake a systematic inquiry into the experience of living with dementia in the community...
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