From the Perspective of People with Dementia: Using Creative Qualitative Measures to Assess the Values and Opinions on Freedom and Safety among People Living with Dementia

Abstract

With the growing numbers of people living in old age, a system that sustains autonomy, dignity and freedom of movement for people living with dementia (PwD) needs to be installed. However, due to the cognitive constraints in the cohort of PwD, traditional qualitative methods of inquiry, such as interviews, are often not a good match. This study aimed to use creative qualitative assessment tools to assess the values and opinions of PwD in nursing homes on freedom and safety. Twenty-two nursing home residents with memory problems participated in this study. Important themes related to freedom and safety were identified using a diverse set of methodologies. Overall, residents had a similar view on ‘safety’, relating this to having a homely environment where people look out for you, with a good balance between busy and quiet areas and being able to retain cognitive and physical function. Values around freedom were more diverse. Residents who were still capable of logical speech generally voiced a wish for independence, making one’s own decisions and wanting to go outside. For residents who no longer spoke, freedom seemed to be experienced more through the connection to other people. These results show that PwD still have distinct personal values concerning freedom and safety, which should be given due consideration in decision-making regarding nursing home policy, thereby potentially improving the quality of life of PwD.