Objective: To explore how older people living in the UK, Spain, Sweden, Slovakia, Ireland, and France view human dignity in their lives, taking account of how this might be affected by factors such as age, social and economic aspects, health, and illness.
Design: A cross-national comparative qualitative study involving focus group methodology.
Materials and Methods: 91 focus groups were held involving a total of 391 older people. Participants (108 males and 283 women) were drawn from a wide range of socio-economic backgrounds. 227 participants were aged between 60 and 79 years, and 98 participants were aged 80 and over.
An agreed focus group schedule was used to increase comparability of findings. All groups were audio-recorded and transcribed verbatim. To ensure complete anonymity, no names were used. Stimulus material was used to encourage discussion. Transcription took place immediately following each group, thus data collection and analysis were concurrent. Data analysis drew on grounded theory method using constant comparison. The iterative process enabled emerging themes to be identified together with deviant/negative cases. Open coding was undertaken independently by 2 researchers in each center, and all centers reported that high levels of agreement between coders confirmed a significant level of reproducibility.
Results: Human dignity was found to be a very salient concept in participants’ lives. Despite their wide range of backgrounds and situations and wide country variations, there was substantial agreement about the meaning and experience of human dignity. 3 major themes were identified, respect and recognition, participation, and dignity in care. Within the last theme participants addressed the impact of dementia on human dignity. Almost all participants knew someone with dementia.
All older people placed high value on the capacity for independence and autonomy and expressed fear of losing these abilities especially if due to dementia. Many preferred to die than end their lives in this way.
Participants saw dementia as a humiliating condition that would rob them of their dignity of personal identity. Many referred to it as a "living death." In such instances, older people saw death as a freedom from "painful indignity" and expressed the view that euthanasia should be allowed especially where such a preference was made explicit in an advance directive.
Conclusion: As 1 in 3 people over 65 will develop dementia before they die, much needs to be done to educate older people about the illness and remove the negative stereotyping that exists. One powerful way to do this would be to ensure that all sufferers receive care that takes account of and enhances individual dignity.
Back to S060 Unexplored Issues in Psychogeriatrics: Spiritual, Ethical, Environmental, and Legal Aspects of Patient Care
Back to The Eleventh International Congress