Article

Relational interactions preserving dignity experience: Perceptions of persons living with dementia

Nursing Ethics 2015, Vol. 22(5) 577–593 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014549882 nej.sagepub.com

Oscar Tranva˚g University of Bergen, Norway; Oslo and Akershus University College of Applied Sciences, Norway

Karin Anna Petersen University of Bergen, Norway

Dagfinn Na˚den Oslo and Akershus University College of Applied Sciences, Norway

Abstract Background: Dignity experience in the daily lives of people living with dementia is influenced by their relational interactions with others. However, literature reviews show that knowledge concerning crucial interactional qualities, preserving their sense of dignity, is limited. Aim: The aim of this study was to explore and describe crucial qualities of relational interactions preserving dignity experience among people with dementia, while interacting with family, social network, and healthcare professionals. Methodology: The study was founded upon Gadamer’s philosophical hermeneutics, and an exploratory design employing qualitative research interviews was conducted. Participants and research context: A total of 11 individuals diagnosed with mild to moderate dementia, living in their own homes, were recruited from two Hospital Memory Clinics in Norway. Ethical considerations: In recruiting persons with dementia as study participants, sensitivity toward their life history, autonomy, integrity, relationships, and dignity is essential. These standards, and the ethical principles of moral sensitivity to their vulnerability, doing no harm, showing justice, and respecting their personal utility, guided our research. Results: Three main interactional qualities preserving the participants’ dignity experience were found: Experiencing love and confirmation; experiencing social inclusion and fellowship; experiencing humane warmth and understanding within a caring culture, while being met as an equal human being. A total of 10 sub-qualities were identified within these 3 main qualities. Discussion and final considerations: Dignity experience among the participants was preserved when certain interactional qualities were present in their interactions with family, social network, and healthcare professionals. While supporting some of the findings of previous studies, this study adds new knowledge on the subject. Knowledge of relational interactions toward preserving dignity experience should be a fundamental part of future dementia care practice. Based on the results of this study, an empirical–theoretical model was developed for this purpose.

Corresponding author: Oscar Tranva˚g, Department of Global Public Health and Primary Care, University of Bergen, P.O. Box 7804, 5018 Bergen, Norway. Email: [email protected]

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Keywords Dementia care, dignity, family, healthcare professionals, interactions, social network

Introduction Today, approximately 35.6 million people worldwide are living with dementia.1 Dementia is characterized by a progressive, irreversible, and thus far incurable cognitive decline. Many of those suffering from this syndrome retain personal attribute and positive personality traits. Nevertheless, as the illness develops, daily living becomes demanding and most individuals experience some or all of the following: memory loss, disorientation, language impairment, difficulties in carrying out activities of daily living, and selfneglect.2 Due to an aging population, the number of people living with dementia is expected to double by 2030, and more than triple by 2050. Consequently, the number of individuals in need of dignitypreserving care is expected to expand.1 For meeting tomorrows’ healthcare challenges in dementia care, interventions aiming for preserving the dignity of those affected should be emphasized.3

On dignity Dignity is a complex concept, and although we already know a good deal about dignity and its significance within the healthcare context,4,5 the concept has been criticized for being a vague6 and useless notion.7 However, according to United Nations,8 all human beings have an inherent dignity, and this understanding is a crucial foundation for the Declaration of Human Rights. Moreover, in Declaration on the Promotion of Patients’ Rights in Europe, the World Health Organization9 underlines that ‘‘patients have the right to be treated with dignity,’’ while United Nations Educational, Scientific and Cultural Organization (UNESCO)10 in the Universal Declaration on Bioethics and Human Rights, underscores how respect for human dignity is a crucial bioethical principle. Nevertheless, there is at present no consensus on the conception of human dignity.5 It does, however, appear to be generally accepted that dignity means ‘‘being of value or worth because of the presence of some necessary characteristics.’’4 Several theoretical studies have explored the concept of dignity, informing each other in a dialectical process toward increased understanding.4 A review of the literature suggests that dignity exists in two complementary yet distinct forms.11 Despite existing ontological and disciplinary differences, several authors portray dignity as a dualistic concept, including absolute dignity versus relative dignity,12–19 basic dignity versus personal dignity,20 objective dignity versus subjective dignity,21 Menschenwu¨rde versus dignity of identity, dignity of stature and dignity of merit,22 and human dignity versus social dignity.11,23 These perspectives show how dignity is perceived, partly as an inherent and irreducible dimension of each human being, and partly as a subjective and changeable dimension influenced by external factors. The latter perspective includes experiences of relational interactions in daily life, constituting a relational form of dignity,24,25 and an interpersonal dignity-dimension.26 Dignity is connected to shared humanity27 and is in this form, a subjective experience rather than a moral quality based on others judgment.4 Research shows that subjective dignity experience can be present even in the terminal phase of life.28,29

Literature review: on dignifying interactions and dementia A literature review was conducted in PubMed, Cumulative Index To Nursing and Allied Health (CINAHL) and ScienceDirect, utilizing the keywords ‘‘dementia AND dignity.’’ We searched for studies published from January 1990 to May 2014 investigating perceptions of persons living with dementia on relational

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interactions influencing their dignity experience. Most research have explored the perspectives of healthcare professionals (HCPs). Studies investigating the perception of persons living with dementia are however limited. Research showed how personal dignity among people with dementia was influenced by relational interactions with family, HCPs, and society as a whole.30–32 Dementia influenced these interactions, and the relational interplay also affected those suffering from this syndrome. Experiencing cognitive decline has been found a threat toward their self-respect and dignity.26,31,33 A gradual increase of illness-related challenges is found to increase the tendency to withdraw from social interactions with others,30,33 especially concerning larger groups of people. Remaining active within meaningful relations has been identified easier in one-to-one interactions.30 Confidence in others was found a crucial foundation for dignity experience, and meaningful interactions can be experienced in relations that are inclusive and acknowledging in nature. Such interaction can strengthen their identity, sense of belonging,31 and dignity.26 Suffering and struggling are found driving forces toward mobilizing dignity-preserving resources, enabling those with dementia to see themselves as active and valuable individuals.31,34 The experience of being a contributor in relational interactions, and making other people happy, is found essential toward helping individuals master their current life situation.33 Involving their individual life-story into present here-and-now interactions is shown helpful toward preserving their dignity experience.26,33 Relational interactions are identified crucial toward helping persons with dementia feel ‘‘in touch with the world,’’ through meaningful social interplay, sense of connectedness, and recognition,35 strengthening the individual’s relational self as a source for enhancing their dignity experience.32 Experiencing understanding and respect from others can help confirm their value as human beings,26,32,36 while losing such interpersonal contact can divest them for cognitive stimulation and public value, affecting their sense of self and self-worth, negatively.30 Relations to spouse and nearest family are found crucial for persons with dementia. The spouse often represents a base of safety, and many dementia sufferers are concerned that their disease may affect their spousal relationship negatively.31,33 Although thankful, developing dependency on spousal assistance can be a dignity-violating experience, as seeing the spouse become exhausted due to caregiver burden can make them question their own human value.31 Being aware of the negative view on dementia by society in general can undermine their dignity experience.31,32 Research shows, however, how individuals also outside their immediate social circle can become a dignifying source toward strengthening one’s societal self,32 while experiencing their voice being heard and not overruled by HCPs is also reported essential. While meaningful and relation-oriented communication is found crucial toward experiencing empowerment and coping,31 being treated with dignity and respect by HCPs is essential for good-quality care.35 Aspects promoting personal independence, autonomy, choice, control, and privacy, are reported the most highly prevalent dignity-preserving factors by persons with dementia living within the care home context.37

Study rationale Influential international organizations promoting bioethics, human health, and human rights underline the essentiality of dignity preservation among all human beings.8–10 Studies document that dignity matters in healthcare5 as a crucial component for quality of life,38 an essential aspect of caring for older adults,39 and a vital foundation of caring for individuals living with dementia.40 However, dignity violations occur in some healthcare contexts. Thus, there is a need for more research-based understanding of the underlying components of dignity preservation to better prepare caregivers to develop dignity-preserving interactions within these relationships.21,41

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Aim The aim of this study was to explore and describe crucial qualities of relational interactions preserving dignity experience among people with dementia. The following research question was addressed to investigate the perceptions of individuals living with dementia: When interacting with family, social network, and HCPs, respectively, which qualities within these relational interactions do persons with dementia find crucial in preserving their dignity experience?

Methodology Design An exploratory design employing qualitative interviews was chosen since this is an advantageous approach when investigating the manifestation and underlying processes of a distinct phenomenon we have limited knowledge on,42,43 and since this design previously has shown appropriate for collecting data on experiences of persons with dementia.26,44,45 The study was founded upon Gadamer’s philosophical hermeneutics46–48 in which interpretation of texts is fundamental for developing an understanding of its meaning. Accordingly, we have developed new understanding of dignifying interactions through reading transcribed interview text over and over again. Our pre-understanding constituted our initial horizon/understanding, identified through reflexive dialogues within the research group. Awareness concerning personal preconception guided us while dialoging with the various parts of the text, and the text as a whole, toward identifying the horizon of the text as well. This process of hermeneutic circle movements helped us move beyond our pre-understanding, toward developing new understanding, through the fusion of our own horizons and the horizon of the interview text.

Pre-understanding Researchers’ pre-understanding should be available to help the reader identify the interpretive context and increase study transparency49 and trustworthiness.42,50,51 All researchers in this study had professional experience in nursing care for persons with dementia. We had also previously conducted qualitative research on dignity in dementia care. Our preconception/initial horizon of dignity-preserving interactions assumed that such interplay, between persons with dementia and their informal/formal caregivers, could be possible within a supportive and caring context, toward confirming the worthiness of those living with dementia. The crucial dignity-preserving qualities of such interactions were, however, unclear to us.

Recruitment procedure and participants Study participants were recruited from two Hospital Memory Clinics in Norway, neither affiliated with our researcher team. Medical doctors responsible for diagnostic examinations and follow-up treatment cooperated with clinical nurses accountable for participant recruitment based on a strategic sampling strategy, and the following inclusion criteria: persons being diagnosed with mild to moderate dementia; aged 64 years or older; living at home together with spouse; speaking Scandinavian or English language; and willing to be interviewed concerning dignity-preserving interactions in daily living. Five women and six men participated. Age among the 11 participants ranged from 64 to 85 years. Of these, 10 were diagnosed with Alzheimer’s disease and 1 with mild cognitive impairment. Eight were native Norwegians, two were born in other European countries, and one was originally from Asia. The latter three had lived their adult lives in Norway.

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Data collection Interviews were conducted by the first author from October 2011 through September 2012. All interviews were carried out in the participants’ home, and a temporary and modifiable interview guide was utilized as structural frame. Examples of questions guiding our conversations were as follows: What brings dignity experience into your current life situation? How do other people affect your experience of dignity? How will you describe your interactions with HCPs? How can your dignity be preserved in these interactions? Follow-up questions added depth and richness into the data collection. One interview was carried out with each participant, lasting from 40 to 89 min (mean ¼ 66 min). All interviews were recorded on MP3 recorder and transcribed verbatim.

Interpretive approach Recruitment of new participants, data collection, and the interpretive process described below continued until we reached a point of data saturation signaling that additional data would only serve to confirm our understanding. The data material was interpreted utilizing Gadamer’s hermeneutical approach described above.46–48 The interpretive process was initiated by individually reading and reflecting upon each interview text. Research group meetings were arranged to discuss patterns of meaning, contradictions, and data inconsistencies. Keywords and phrases were noted during each reading, and the essence of each account was identified, investigated, and formulated into themes and sub-themes. Each new interview text made those already explored more understandable, while simultaneously adding new meaning of their own. Finally, the entire text was explored, increasing our understanding of its parts and the data material as a whole.46,47

Ethical considerations In recruiting persons with dementia as study participants, sensitivity toward their life history, autonomy, integrity, relationships, and dignity, is essential.22 These standards, and the ethical principles of moral sensitivity to their vulnerability,52 doing no harm, showing justice, and respecting their personal utility,53 guided our research. All participants (and their spouses) received verbal and written information on all aspects of the study, including their rights to withdraw without any consequences concerning future treatment and care. Each received a copy of the interview guide containing 10 main interview-questions to help increase their understanding of the interview and strengthen their position to either accept or decline study participation. Each participant decided whether the interview should be conducted in their own home or at the researcher’s office. Informing participants’ spouse helped assure recruitment of only those capable of giving an informed consent. As researchers, we assumed responsibility for ensuring participant anonymity and confidentiality, and to communicate the study results in an appropriate language style toward preserving the dignity of each participant. The study received ethical approval from South East Regional Committee for Medical and Health Research Ethics, Norway.

Results Data interpretation showed how experiencing cognitive decline influenced relational interaction, making their interplay with others increasingly demanding. Participants’ experience of dignity was thus not constituted by intrapersonal reflections alone, but also affected by their interpersonal experience in communicating with others. Crucial qualities, leading to experiences of dignity among our study participants while interacting with family, social network, and HCPs, were identified.

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Dignity-preserving interactions within the family Experiencing love and confirmation All participants lived at home together with their spouse, had children and grandchildren, and some also great-grandchildren. Crucial qualities of family interactions helped preserve the participants’ dignity experience also after being diagnosed with dementia. Feeling the love and affection from the spouse. Living with dementia affected participants on a deeper level, questioning their own worthiness as a partner after being diagnosed. While sharing their perceptions, they underscored the crucial role of one’s spouse, including crucial qualities of everyday spousal interactions: My wife . . . not just the fact that she helps me prepare my meals . . . there’s so much more than that . . . it’s the depth of dignity, joy and love . . . which means so much . . . and defines what dignity really is . . .

Experiencing the spouse’s affection and joy while confirming their love was thus identified as a crucial dignity-preserving aspect of spousal interaction. Having spousal support during activities of daily living. Living with dementia gradually made it more difficult for the participants to organize their daily lives. Spousal support was therefore a crucial dignifying aspect of these interactions, helping them find meaning and coherence toward mastering activities of everyday life: Yes, we manage . . . it (daily living) all works out, and he (her healthy husband) fixes everything of course and . . . yes . . . we help each other . . . really, I believe . . . and that’s’ important! Alone . . . this would be difficult . . . no, I just hope I die first . . .

Also the interaction with own children and grandchildren/great-grandchildren was of great importance to them. Our interpretation showed how crucial interactive qualities within these relationships helped preserve the participants’ experience of dignity. Feeling appreciated and acknowledged as a parent and grandparent/great-grandparent. Living with dementia affected participants’ self-esteem negatively. Feeling the love and respect from children, grandchildren/ great-grandchildren, their understanding concerning health problems related to old age, and being perceived as a significant person who still is playing an important role within the family, helped strengthen self-esteem and preserve their dignity experience: . . . being together with children, grandchildren and great-grandchildren is wonderful . . . [ . . . ] recognizing their love for you, is also a form of dignity . . . [ . . . ] they respect me, even though I have dementia . . . you feel they look up to you somehow . . . despite the diagnosis . . . it seems like a natural thing to them: ‘‘The dear old man, our dear great-grandfather’’ . . . they understand that a great-grandfather shouldn’t look like an 18 year old

Moreover, remaining ‘‘a contributor’’ within the family, experiencing that their loved ones still benefited from their presence, was an important aspect for preserving their sense of dignity: That they still need me . . . yes, the youngest (her grandchild) was preparing for his high school exam in German . . . and when he came in the door he called out: ‘‘Grandma!!’’ . . . You see, I have a degree in German (from the University). So we sat down . . . and worked hard . . . preparing for this oral exam . . . It’s good to be needed . . .

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Dignity-preserving interactions within the social network Experiencing social inclusion and fellowship The interpretation showed how inherent qualities of relational interactions with people also outside the family had crucial impact on their dignity experience after being diagnosed with dementia. Perceiving friendships stay alive. Keeping in touch with friends was important to them. Experiencing the privilege of spending quality time with long-term friends was a crucial dignifying source: . . . what gives my life dignity? . . . having friends, both men and women . . . keeping our friendships alive, and enjoying time together

Feeling socially included, living an active life within a social fellowship. Being part of an extended social network was also a crucial interpersonal aspect. Experiencing social inclusion as a full member of society, and not being labeled as ‘‘demented,’’ was identified as an essential dignity-preserving quality within these interactions: . . . they (social network) treat me as a normal person [ . . . ] not everyone makes a big deal out of my diagnosis, and luckily for that [ . . . ] as far as dementia is concerned people should be very careful . . . and not limit their focus . . . to the diagnosis alone

While sharing their perceptions of crucial dignifying qualities within relational interactions, participants also emphasized the opportunity to take part in social activities: It’s a lot of fun (at the senior center) . . . activities all the time . . . a little exercise, dance and music [ . . . ] We all dance together . . . in a big circle . . . for a couple of hours. Then comes the cake . . . all the right ingredients must be found, mixed together, baked and decorated (laughs) . . . it gives you . . . something to keep you active . . .

Being part of a social fellowship, interacting in a meaningful and enjoyable way, was a crucial dignitypreserving quality, derived from interplay with others.

Dignity-preserving interactions with HCPs Experiencing humane warmth and understanding within a caring culture, while being met as an equal human being Attitudes and behaviors among HCPs had an important impact on participants’ dignity experience after being diagnosed with dementia. Interactions focusing on ones’ humanity, founded on humane and friendly HCP attitudes, were identified as essential toward reinforcing participants’ feeling of being worthwhile human beings. HCPs were perceived as experts on dementia with knowledge on issues of importance, and thus in their current situation, an essential resource toward helping each make the most out of life. From their influential position, HCPs who treated our study participants as equal human beings helped confirm their experience of human worth, enhancing their sense of dignity. Feeling respected, listened to, and taken seriously. A crucial foundation for dignifying interaction was established when HCPs helped participants feel less stigmatized or labeled as ‘‘demented.’’ Participant experience of being respected, listened to, and taken seriously by HCPs had a crucial impact on their self-

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perception and sense of dignity. In contrast to situations where HCPs made participants feel overlooked or devalued, genuine interest among HCPs, reinforcing essential experience of being a unique and respected individual, was identified as a crucial quality of these interactions: . . . be concerned about what you have to say [ . . . ] be treated as a real person . . . and allowed to be the center of attention (of the HCPs) . . . and encouraged to express your concerns . . . and be listened to . . . yes, because there are many times one is not allowed to do so . . . when those you meet don’t acknowledge you as an equal . . . making you feel small and unimportant [ . . . ] when they are superficial . . . I can feel the difference . . . sensing that what you have to say is of real interest, yes . . . yes, that makes a great difference.

Experience of respect, of being listened to, and taken seriously was inevitably connected to the way HCPs interacted with them. Professional caregiver attitude and behavior were thus crucial sources toward preserving their sense of dignity. Meeting kindliness. Living with dementia involved a personal vulnerability when entering relational interactions with others. Unspoken worry and uncertainty concerning how HCPs would communicate with them was not uncommon. Sharing their perceptions, participants underscored the importance of being met with kindness as a crucial dignifying factor: . . . to be spoken to in a normal manner, that they (HCPs) are kind . . . friendly . . . and smile from time to time . . . no need to be best friends or anything like that . . . I don’t need that. Just normal, kind . . . friendly.

Receiving health-related information in a gentle manner. HCPs explanations concerning their health condition were important for participants to be able to understand their current situation. However, being informed on health status or future outlook also represented major challenges and vulnerability for personal dignity violations. Sharing their perspectives on crucial qualities toward preserving dignity experience, the importance of HCPs gentleness was highlighted: . . . one (HCPs) must be direct of course, yet, as gentle as possible [ . . . ] explain the problem, in a manner that’s . . . yes, careful and respectful [ . . . ] courteously . . . in a clear and gentle way.

Adopting positive realism while feeling empowered. Gaining insight from comprehensible HCP interactions helped support them become ‘‘a participant’’ and not merely ‘‘a spectator’’ of daily life. Meeting HCPs and being influenced by their attitudes anchored in a positive and realistic view on their life situation, while experiencing being personally empowered, was identified a crucial dignity-preserving quality of these interactions: Explain what my trouble is . . . what can be done about it . . . so I can function as best I can [ . . . ] and perhaps . . . if it’s possible, say something positive too . . . .

Empowering HCP information also helped promote personal autonomy, meeting participants’ need for dialogue and clarification concerning their own circumstances and life situation: That they (HCPs) explain first what they plan to do and why . . . and that I can ask questions [ . . . ] so you can feel prepared.

Although the foundation for dignity-preserving interactions was anchored in the caring qualities within HCP–patient relationships, participant perception concerning national healthcare priorities, and their

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personal status within the systems, also formed part of an ‘‘interaction-with-the-healthcare-system-experience’’ affecting their dignity experience. Experiencing similar status and rights as other patient groups. When interacting with HCPs representing the healthcare system, the principle of receiving quality training, and available treatment comparable to other patient groups, constituted a crucial foundation for dignity preservation. Participants reported their need for being perceived as true individuals, with the same value, status, and rights for training and available treatment as non-demented patients: . . . down there (at the convalescent center) they have a training program and a counselor. Those attending are convalescent patients . . . yet I believe we should have a similar program as well . . . we who are mentally sick (have dementia) . . . like someone who breaks a leg. [ . . . ] When it comes to Dementia . . . we have barely started compared with cancer patients for example [ . . . ] We’re talking about peoples’ lives . . . and as far as dignity is concerned, society ought to place a limit on what’s acceptable and what is not.

Recognition from the healthcare system, with equal status and rights toward teaching, training, and available treatment, constituted hope for future dignity-preserving interactions with HCPs, as well as the healthcare system they represent.

Theoretical understanding According to Gadamer,46 the hermeneutic approach utilizes interpretation to develop new understanding of texts and their meaning. This process also involves developing a theoretical understanding of the phenomenon under investigation. In this study, we found the Theory of Caritative Caring and the theoretical perspectives of the suffering human being, both by the Finish theorist Katie Eriksson,12–16,54–58 a meaningful framework for developing a theoretical understanding of crucial interactional qualities preserving our participants’ dignity experience. This comprehension will be presented below, followed by a model illustrating our empirical–theoretical understanding. First, interacting with a loving and affectionate spouse, helping to confirm their worth as a partner, had crucial impact on their sense of dignity. Sensing the inclusive attitude of the spouse, supporting them to take part in meaningful activities of daily life, was also a crucial dignity-preserving quality. Additionally, feeling appreciated as a contributor in the lives of their children and grandchildren/great-grandchildren was also an essential dignifying quality within family interactions. According to Eriksson and Edlund,12–19 absolute dignity is inherent, inalienable, and granted by virtue of being human, while relative dignity relates to the experience of self-worth and human value in relationships with others. Relative dignity is modifiable, influenced by relational interactions of daily living, and can therefore either increase through external support and confirmation or be torn down through external violation. These two forms of dignity form the basic concept within ethos of caritative caring, described in Eriksson’s theoretical framework on caritative caring for the suffering human being.12–16,54–58 Caritas, meaning love and charity, constitute a fundamental motive for true caring for suffering human beings.14–16,55 The caritas motive can therefore be seen as a crucial quality of spousal interaction, preserving the relative dignity of her/his partner with dementia. While questioning their own worthiness as a partner, the participants’ sense of dignity was activated while experiencing spousal joy, affection, and everyday support, confirming them as worthy partners by bringing faith and hope into their life. Thus, caritative caring, characterized by human warmth, compassion, responsibility, and sacrifice, was a crucial dignity-preserving quality of the spousal interaction. Moreover, interacting with children and grandchildren/great-grandchildren, experiencing their love and appreciation for being an important contributor in their lives, also helped enhance participants’ relative dignity experience.

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According to Eriksson, closeness, tolerance, and respect are crucial in confirming an experience of human worth and dignity among the suffering human being.12–16,54–58 Based on this empirical–theoretical understanding, having an opportunity for experiencing love and confirmation was found to be the overall crucial quality of dignity-preserving interactions within family relationships. Second, having friendships remained vital for participants’ sense of dignity. Also feeling socially included in an extended social network, and living an active meaningful life within a social fellowship, was found to be a dignity-enhancing resource. Experiencing social inclusion as a full member of society, not devaluated as ‘‘demented,’’ was identified a crucial dignity-preserving quality within these interactions. Through caritative invitation,14,16,56 they experienced how friends, and people in their extended network, welcomed them into an intimate and stimulating caring communion characterized by closeness, tolerance, and respect.13,16,54 Being invited to take part in social activities within such a communion, with familiar values, traditions, and rituals, participants were given opportunities for tending, playing, and learning,16 within a fellowship confirming their sense of human worthiness.13–16 Based on this empirical–theoretical understanding, having the opportunity of experiencing social inclusion and fellowship was found to be the overall crucial quality promoting dignity experience within these relational interactions. Third, while interacting with HCPs, crucial qualities related to these caregivers’ attitude and behavior helped preserve participants’ sense of dignity. Feeling respected, listened to, taken seriously, treated with kindliness, given health-related information in a gentle manner, plus adopting positive realism while feeling empowered were among the most crucial dignity-preserving qualities found in these interactions. Caritative caring is anchored in the ethos of love and responsibility, and as formulated by Eriksson, the caritative mantra ‘‘I was there, I saw, I witnessed and I became responsible’’58 involves an ethical obligation for promoting that which is good as well as resisting evil.14,16,54,55,58 Nursing as an art helps the suffering patient progress in the healing process where she/he is acknowledged, trusted, validated, and confirmed.56 While interacting with HCPs who were devoted to their responsibilities for the suffering human being,15,16 our participants experienced how these HCPs attitudes and behaviors enhanced their dignity experience. Interplay with HCPs did, however, also involve an interaction with the system providing healthcare services. The perceived priorities of this system also impacted their dignity experience. Experiencing having similar status and rights as other patient groups was identified as a fundamental quality crucial for preserving dignity experience. Developing an empirical–theoretical understanding, the caritative invitation14,16,56 is also found to be a relevant concept describing a dignity-preserving healthcare system. Welcoming individuals with dementia, while focusing attention on meeting their needs, is essential for developing a compassionate caring culture.15,16 Caring for the suffering human being, within a healthcare system characterized by a caring culture founded on warmth, hospitality, respect, and honesty, helps alleviate suffering related to illness, prevent suffering related to care, and preserve human dignity.13–16,54 Based on this empirical–theoretical understanding, participant opportunities for experiencing humane warmth and understanding within a caring culture, while being met as an equal human being, were found to be the overall crucial qualities toward preserving their dignity experience while interacting with HCPs and the healthcare system they represent (see Figure 1).

Discussion and final considerations Initially, certain study limitations and ethical considerations should be addressed. Along with spousal support, all participants had the necessary personal resources to participate. We find it reasonable to believe that if participants lacking these resources had been included, this might have influenced the findings. The sample was limited and the results cannot therefore be generalized to the entire population within the inclusion criteria. Thus, crucial qualities of relational interactions are likely to exist within the total population not documented in this study. Conducting only one interview with each participant is also a limitation. The

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Dignity-preserving interactions within the family Experiencing love and confirmation

Feeling the love and affection from the spouse Having spousal support during activities of daily living

Based on caritative love, warmth, compassion, responsibility, closeness, tolerance and respect, the worth of the suffering human being is confirmed, bringing faith and hope

Feeling appreciated and acknowledged as a parent and grandparent/great-grandparent

Dignity-preserving interactions within the social network Experiencing social inclusion and fellowship Based on caritative invitation into a caring communion founded on closeness, tolerance and respect, anchored in familiar values, traditions and rituals

Perceiving friendships stay alive Feeling socially included, living an active life within a social fellowship

Dignity-preserving interactions with healthcare professionals Experiencing humane warmth and understanding within a caring culture, while being met as an equal human being Based on the caritative ethos of love, compassion and responsibility, the ethical obligation of a caring culture is promoting a healing process in which the suffering human is invited, respected, validated and confirmed

Feeling respected, listened to and taken seriously Meeting kindliness

-Individual level

Receiving health-related information in a gentle manner Adopting positive realism while feeling empowered

- System level

Experiencing similar status and rights as other patient groups

Figure 1. Empirical–theoretical model concerning crucial qualities of relational interactions toward preserving dignity experience among individuals living with mild to moderate dementia.

interview was, however, identified as challenging for some of them, activating personal reactions such as sadness, distress, or difficulties concerning articulation. Therefore, based on our responsibility for moral sensitivity regarding the vulnerability of research participants with dementia,52 doing no harm, while promoting utility and justice,53 and sheltering their dignity,22 interviews were limited to one per participant.

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Three participants requested their spouse to be present during the interview should the need for spousal support occur. We are open to the possibility this action may have had toward influencing the data collection. Nonetheless, we found spousal assistance added valuable nuances to the data by helping these participants understand and reflect upon the researcher’s questions. The empirical data opened for a continual interpretive dialogue with the interview texts. We explored the texts separately, then in relation to each other, and in its entirety, moving back and forth within the hermeneutic circle of interpretation.46–48 Awareness concerning our initial preconception-horizons on the importance of informal/formal caregiver support, and on confirming participants’ self-worth, helped us question our interpretations critically while seeking additional routes of understanding. This process helped us to move beyond our pre-understanding and initial interpretations, toward deeper understanding and comprehension. To enhance study trustworthiness, we focused on developing processes within our research team which helped us secure study quality. As framework, we found the research criteria of study credibility, dependability, confirmability, transferability, and authenticity50,51 most helpful. To increase credibility, reflexive journaling was emphasized during planning, data collection, and data interpretation. Our pre-understanding was described and reflected upon during all phases. All interviews were audiotaped to secure verbatim transcriptions while disconfirming evidence was sought after throughout the interpretation process. Dependability was sought through emphasizing a transparent documentation of the research process. To avoid interpretive bias, confirmability was empowered by carefully documenting all participants’ shared information while reflecting on our preconceptions. We also searched for disconfirming evidence within the data to avoid confirmation bias. To heighten transferability, we emphasized collecting sufficient descriptive data to establish a thick description of participants’ perceptions.42,50 To increase authenticity, portraying the perceptions expressed by the participants themselves was highlighted.51 While experiencing cognitive decline as a threat toward their self-respect and dignity, our interpretation showed how certain qualities of relational interactions with family, social network, and HCPs helped preserve the participants’ dignity experience. Our results therefore support previous research reporting that relational interactions and intercommunication affect self-respect and dignity of people with dementia.26,31,33 Concerning interactions within the family, some studies have previously described the role of the spouse, representing a base of safety in everyday life.31,33 In our study, however, we found how experiencing love and affection from the spouse, confirming them as a worthy partner, was a crucial dignity-preserving quality within this relational interaction. Previous documentation on this aspect is limited and should be explored further in future research. Additionally, our findings showed how feeling included and supported by the spouse in daily activities also was a crucial quality enhancing participants’ sense of dignity. Moreover, we found how feeling appreciated by their children and grandchildren/great-grandchildren, and being an acknowledged contributor among descendants, was a crucial dignifying quality within their interplay. Literature reviews suggest that previous documentation on this aspect is rather sparse. Future research should therefore aim to increase our understanding of this important subject. Inherent qualities of relational interactions outside the family had crucial impact on participants’ sense of dignity as well. While previous studies have shown how individuals outside the immediate social circle can be a dignity-preserving source, supporting the ‘‘societal self’’ of those with dementia,32 our findings showed how keeping in contact with long-term friends, and experiencing how their friendship remained alive despite being diagnosed with dementia, was found a crucial dignifying quality within these interactions. Moreover, feeling recognized by an extended social network not treating them as ‘‘demented’’ helped strengthen our participants’ sense of remaining full members of the society. Feeling socially included within a confirming fellowship and having opportunity to actively partake in meaningful social activities were found crucial toward sheltering dignity. This adds new perspectives to previous research reporting how social interactions lay foundations for the feeling of being recognized, connected, and ‘‘in touch with the

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world,’’35 strengthening their ‘‘relational self’’ as a source toward enhancing dignity experience.32 Our results support previous studies documenting how remaining active and seeing oneself as a valuable person living in relations with others were driving forces toward mobilizing dignity-preserving resources.31,34 HCPs attitude and behavior also had crucial influence on participants’ sense of dignity. Self-image among people with dementia, and their perception of others, depends on how others approach them. Their experience of illness-related challenges, while living in their own homes, is affected by the way HCPss treat them.59 We found how being met with a warm and understanding attitude, while being perceived as equal human being by HCPs, was a crucial quality within these interactions. Also, previous studies have reported how sensing the compassion and understanding of others can help confirm human worth among people with dementia.26,32,36 However, we identified the essential impact HCPs kindliness had on our participants’ dignity experience. In their worries, uncertainty, and vulnerability, these humanistic qualities strengthened our participants’ experience of receiving respectful care from HCPs concerned about their wellbeing. Our literature review suggests that previous documentation on the impact of HCPs kindliness is rather sparse, and should therefore be addressed in future research. Previous research reports how experiencing being listened to and not being overruled is vital for individuals living with this disease.31 Being treated with dignity and respect by HCPs is essential for good-quality care for those living with dementia.35 Our study adds perspectives to this knowledge documenting how feeling respected, listened to, and taken seriously by HCPs was identified as a crucial source toward dignity experience. Feeling the genuine interest of HCPs reinforced their sense of being unique individuals, worthy of respect and being listened to. In need of increased understanding concerning their current situation and future outlook, we found how receiving health-related information from HCPs in a gentle manner helped shelter participants’ sense of dignity. In their vulnerability, HCPs gentleness was crucial in this respect. Our literature review suggests that more research on the impact of HCPs gentleness is needed, and the subject should therefore be addressed in future research. Interactions founded on HCPs positive realism and efforts to help participants actively take part in their own lives were identified as crucial qualities supporting their personal autonomy. Being invited to take part in dialogues with HCPs on subjects important for them, and being empowered toward making decisions on their own, helped preserve their sense of dignity. Thus, these findings add new perspectives to previous research that have documented how autonomy, choice, and control are vital dignity-preserving factors,37 and research suggesting how relation-oriented HCP–patient interaction is crucial towards empowering individuals with dementia to master their everyday life.31 Importantly, concerning participants’ sense of dignity while interacting with HCPs, we also found how they underlined the importance of having similar status and rights for training and available treatment like other patient groups, for example, those suffering from somatic diseases. In other words, the findings revealed how their perception of whether or not being equally prioritized by the healthcare system influenced their sense of dignity. To our knowledge, experiences concerning system-level equality and its impact on sense of dignity among people with dementia have previously not been documented. Future research should therefore explore this subject further. Literature reviews showed that previous research documenting crucial dignifying qualities of interactions involving people with dementia, their family, social network, and HCPs is rather limited. Supplementing previous research, this present study adds new empirical knowledge on the subject, documenting the perceptions of individuals living with mild to moderate dementia. This article contributes to increase knowledge concerning dignifying interactions with their spouse, children, and grandchildren/great-grandchildren. This paper also adds new knowledge on dignifying HCPs attitude and behavior, documenting the essential impact of HCPs kindness, and gentleness, on dignity experience among our study participants. This present study also adds new empirical understanding regarding the need among people with dementia for a dignitypreserving healthcare system, providing similar status and rights for training and available treatment, likened to other patient groups. Finally, based on Eriksson’s theoretical framework of caritative caring for

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the suffering human being,12–16,54–58 the study adds new empirical–theoretical understanding, and a model, concerning qualities of relational interactions, crucial for preserving dignity experience among people living with mild to moderate dementia. Due to the above considerations, the study should have practical value for HCPs toward stimulating their ethical reflections upon dignity preservation as a crucial existential dimension within dementia care. Increased awareness regarding the effect of HCPs attitude and behavior, on dignity experience among persons with dementia, should encourage the development of dignity-preserving care practices. Focusing HCPs attention on promoting meaningful social activities and fellowship among patients and their friends and extended social network, can help establishing dignity-preserving care practice while recognizing the basic need of every human as a social being. Recognizing the essential value of patient’ spouse, children, and grandchildren/great-grandchildren, HCPs can encourage dignity-preserving interactions within each family. HCPs can contribute to dignity-preserving dementia care practice by developing a caring culture in which people with dementia experience themselves as equal human beings. This means establishing relational interactions in which HCPs kindliness, gentleness, and positive realism are present, enabling those living with dementia to feel respected, listened to, taken seriously, and empowered. Acknowledgements We are thankful for our participants’ entrusting engagement in sharing their perceptions with us. We would also like to give a special thanks to English language consultant Robert Dean Luke (MSN, OCN, RN) for his helpful advice in preparing this article for publication. Conflict of interest The authors declare that there is no conflict of interest. Funding This research was supported by Oslo and Akershus University College of Applied Sciences. References 1. World Health Organization and Alzheimer’s Disease International. Dementia: a public health priority, http://www. who.int/mental_health/publications/dementia_report_2012/en/ (2012, accessed 17 June 2013). 2. National Institute for Health and Care Excellence and The Social Care Institute for Excellence. Supporting people with dementia and their carers in health and social care, http://guidance.nice.org.uk/CG42/NICEGuidance/pdf/ English (2012, accessed 17 June 2013). 3. Engedal K and Haugen PK. Demens: Fakta og utfordringer [Dementia: facts and challenges]. 5th utg [5th ed.]. Sem: Nasjonalt kompetansesenter for aldring og helse [National Center for Competence in Aging and Health], 2009. 4. Gallagher A, Li S, Wainwright P, et al. Dignity in the care of older people—a review of the theoretical and empirical literature. BMC Nurs 2008; 7: 11. 5. Gallagher A. Editorial: what do we know about dignity in care? Nurs Ethics 2011; 18(4): 471–473. 6. Billings JA. Dignity. J Palliat Med 2008; 11(2): 138–139. 7. Macklin R. Dignity is a useless concept. BMJ 2003; 327(7429): 1419–1420. 8. United Nations (UN). The Universal Declaration of Human Rights, http://www.un.org/en/documents/udhr/ (1948, accessed 17 June 2013). 9. World Health Organization (WHO). A declaration on the promotion of patients’ rights in Europe. Amsterdam: WHO, article 5.8, http://search.who.int/search?q¼AþDeclarationþonþtheþPromotionþofþPatients% E2%80%99þRightsþinþEurope&ie¼utf8&site¼who&client¼_en_r&proxystylesheet¼_en_r&output¼xml_ no_dtd&oe¼utf8&getfields¼doctype (1994, accessed 4 February 2014).

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Relational interactions preserving dignity experience: Perceptions of persons living with dementia.

Dignity experience in the daily lives of people living with dementia is influenced by their relational interactions with others. However, literature r...
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