Ten messages from the voice of people with dementia – Self-perception of people with dementia in Hong Kong

Abstract

Background Aging population and dementia are treated as the alarming issues in Hong Kong. The term “dementia” in Asia including China, Japan, Singapore, Taiwan, Hong Kong, South Korea and more, has been translated as “Chi Dai Zheng” before which carries a very negative connotation. Hong Kong is one of the highest institutionalization rate countries which is 6.8% of the aging population. Over 50% of residents experience different levels of neuro-cognitive impairment in the local residential care homes. In order to bring a new dementia care culture, the collaboration of care plan and voice of people with dementia are tremendously vital to the design of future dementia care services.

Method Qualitative research with interpretivism, understanding the daily interactions between people with dementia as well as the caring staff and thematic analysis were applied. 10 people with dementia and 10 caring staff in the subvented and non- subvented residential care homes were invited in this study. One-session of training workshops were made to the frontline caring staff based on the results of interviews and two follow-up focus groups were conducted.

Results People with dementia experience the “puzzling self” as they are living in-between the self-perceived reality and others-perceived reality. Ten messages of people with dementia are concluded and reviewed from Ms Kate Swaffer in this research, i.e. “I can listen and understand what you say, please do not discuss me in front of me; I am not deaf and it is disrespectful to me.”, “I can perceive myself and hear how and see how others perceive me, please do not think that I do not care who I am or how you perceive me.”, “I will compare with the other residents and therefore, sometimes I do not think that I have dementia; this is my new normal.”, etc. The new interpretation of presenting behaviour among people with dementia as unmet needs were found (B+/B- & C+/C-).

Conclusion The findings highlight how the external factors affect the self-perception of people with dementia, especially the interactions between the caring staff and people with dementia. All of the outsiders should learn from the insiders’ perspective in order to co-construct the best caring relationship regarding the "synchronization” of people with dementia.