S5.2 Dignity of older people
Chair: Oscar Tranvåg
Influential voices from the United Nations, World Health Organization, European Union and UNESCO emphasize dignity as an inherent quality of each human being, a fundamental human right, a leading ethical principle for healthcare professionals to follow. Internationally, the populations are rapidly ageing, increasing need for primary health care, and for more qualified healthcare personnel. Several countries are preparing for the growing challenges and opportunities of aging, placing dignity and dignity-preservation as fundamental aspects. However, there is a need for increased understanding of dignity in older people experiencing illness and suffering. Such knowledge will better prepare healthcare personell towards developing dignity-preserving care. This symposium will highlight dignity of older people experiencing illness and suffering, including: A Nordic study of how old persons in nursing home residencies maintain dignity, from the perspectives of residents, family caregivers and healthcare personnel. A Swedish study study of how a dignified life for individuals with advanced dementia required nursing home staff to provide individualized support – to pursue human capabilities. A Dutch study of dignity-enhancing components of Namaste Care – a person-centred, psychosocial palliative approach in advanced dementia. A Norwegian - British study of dignity in older wives caring at home for a husband with dementia. The presented studies will be discussed with the audience, emphasizing implications for practice and further research.
S5.2.1 A life in dignity in nursing homes
Dagfinn Nåden1, Maj-Britt Råholm2, Vibeke Lohne1, Berit Sæteren1, Åshild Slettebø3, Bente Høy4, Arne Rehnsfeldt2, Synnøve Caspari1, Anne Kari Tolo Heggestad5, Trygve Aasgaard1, Britt Lillestø6, Lillemor Lindwall7
1 OsloMet – Oslo Metropolitan University (formerly Oslo and Akershus University College of Applied Sciences), Norway, 2 Western Norway University of Applied Sciences, Norway, 3 University of Agder, Norway, 4 VIA University College, Denmark, 5 University of Oslo, Norway, 6 Nord University, Norway, 7 Karlstad University, Sweden
Background: Discovering that research on dignity for residents in nursing homes was scarce during the first decade of this century, researchers from institutions in Nordic countries designed a study to explore how dignity was promoted and attended to in nursing homes. Methodology: Hermeneutics, individual and focus group interviews. Results: From the family caregivers’ perspective: Related to caring cultures three patterns were revealed: dignity as at-home-ness, dignity as the little extra and as a non-dignifying ethical context. Dignity in care was experienced on concrete, relational and existential levels. Family caregivers’ narratives about dignity and indignity revealed two main themes: Treating others as one would like to be treated oneself and uneasiness due to indignity. Concerning dignity and existential concerns one main result was to have aesthetic and ethical needs and values attended to. Concerning indignity in care the overall theme was: A feeling of being abandoned. From the residents’ perspective: Negative views about dependence and negative attitudes and actions of healthcare personnel might diminish independence and lead to a lack of autonomy. Being involved as a part of society and as the person one is and strives to become was essential. Fostering dignity through meaningful participation and through experiencing enjoyable individualized activities was underlined. Concerning the question of what nursing home residents do themselves in order to maintain their dignity, the following main themes emerged: Striving to be at home, for inner freedom and autonomy, and for a meaningful life. From the perspective of healthcare personnel: How healthcare personnel focused and fostered experiences of dignity in residents is shown in the themes: dignity as distinction and dignity as influence and participation. Conclusion: The results provide insight in dignity and indignity in care as well as how to preserve dignity of older people in nursing homes.
S5.2.2 Understanding dignity in the lives of people with advanced dementia from the
perspective of Martha Nussbaum’s approach to human capabilities
Catharina Melander, Stefan Sävenstedt, Britt-Marie Wälivaara, Malin Olsson
Luleå University of Technology, Sweden
Background: Challenges experienced when supporting people with advanced dementia who express problematic behaviors include understanding their needs and ensuring a dignified life for them. The aim was to explore how Martha Nussbaum’s approach to human capabilities can apply to dignity in the lives of people with advanced dementia living in nursing homes. Methods: Four women diagnosed with advanced dementia who also expressed problematic behaviors were recruited from a nursing home in Northern Sweden. Data were gathered using an ethnographic approach based on participatory observation. Nussbaum's capability approach was then used as a framework for the analysis. Results: A dignified life for individuals with advanced dementia required nursing staff to be present and to provide individualized support to ensure that the person could actually pursue human capabilities. Individuals with advanced dementia had difficulties to participate in the planning of their lives and achieving the human capability of practical reasoning. They were at risk of being placed outside the social group hindering them from achieving affiliation. Conclusion: Creating opportunities for the human capabilities of practical reasoning and affiliation is essential as they permeate all other human capabilities. When supporting a dignified life for individuals with advanced dementia it is important not only to create opportunities for human capabilities but also to pay attention to their expressions and needs and to guide them towards a dignified life.
S5.2.3 The Namaste Care psychosocial intervention to improve living with advanced
dementia: dignity-enhancing components
Jenny T van der Steen
Leiden University Medical Center, The Netherlands
Background: Many people are concerned about loss of dignity should they or their loved ones develop dementia – and when it progresses to an advanced stage. Namaste Care is one of the few programs specifically directed towards improving life with advanced dementia. This psychosocial intervention from the US is based on a person-centred and palliative approach. In an ambient group-setting, nurses use simple means to connect with people with dementia. These fit with preferences and personality, such as loving touch, massage, music or combing hair in a non-task oriented manner. Methods: In the Netherlands, we adapted the program to involve families more, and we trial effects on quality of life and family caregiving experiences in 19 nursing homes. We also examine its effective ingredients. These may be dignity enhancers such as social inclusion, affirming identity and meaningful relationships, and engaging in the moment. We will map elements of the Namaste Care Family program onto dignity frameworks. Results: We present preliminary results on effects and the program’s active ingredients and to what extent these comprise dignity enhancers.
Conclusions: The findings will expand the evidence base on psychosocial interventions in advanced dementia by considering effects on relevant outcomes, and a better understanding of the nature of effective ingredients.
S5.2.4 Dignity of older women caring at home for a husband with dementia
Oscar Tranvåg1, Dagfinn Nåden2, Ann Gallagher3
1 University of Bergen, Norway, 2 OsloMet – Oslo Metropolitan University, 3 University of Surrey, UK
Background: Dementia disproportionately affects caregiving wives, and there is a need for increased knowledge on how their dignity experience can be preserved. Such improved understanding can support caring practice, policy development and research relevant to the numerous older wives caring for a home-dwelling husband with dementia. Methods: An exploratory design founded upon Gadamer’s hermeneutical methodology, employing qualitative interviews as a tool for data collection. Results: Crucial aspects preserving caregiving wives’ intrapersonal dignity: The study found that experiencing personal growth, involving: becoming more patient; developing personal sensitivity and gentleness; upholding a positive mindset; maintaining aspects of continuity in daily life; living in the moment, and; being a good wife and a good caregiver – were crucial aspects preserving caregiving wives’ intrapersonal dignity experience. Crucial aspects preserving caregiving wives’ interpersonal dignity: Sheltering the husband’s dignity, involving: compensating for his loss of health; upholding his sense of self-worth, equality and citizenships, and; choosing secrecy versus openness – plus, experiencing true understanding, were dignifying interpersonal aspects experienced in interaction with husband, family and social network. When interacting with healthcare professionals (HCP), experiencing HCPs genuine interest and compassionate care; being a respected partner in dialogue, and; receiving HCPs acknowledgement and encouragement, were found vital towards preserving their interpersonal dignity experience. Conclusion: The data suggests that dignity experience among these wives were related to their everyday efforts towards coping with challenging circumstances – seeing opportunities to improve the situation of themselves and their husbands – presenting a strong argument for respect..