The experiences and expectations of persons living within the community with early-stage dementia

Abstract

Background: As the world population ages, the number of older persons living with dementia (OPLWD) is also increasing. Due to the cognitive changes that occur as a result of dementia, the OPLWD is most often overlooked, and not given a voice. International literature revealed that OPLWD are able to put their experiences into words. They are able to express how they live their day-to-day lives with the condition, and what they expect from the future. Aims: After identifying a gap in the literature, this study aimed to explore the lived experiences of OPLWD in the community in Malta. This study aimed to discover the experiences, feelings, needs and challenges that the OPLWD faced in their day-to-day life. Another aim was to explore what OPLWD anticipated for the future. Method: A qualitative research approach was utilised for the study in order to gain a deeper understanding of the perspectives of OPLWD, and their lived experiences. An interpretative phenomenological analysis (IPA) was considered as the best approach to take, in order to capture in detail the lived experiences of OPLWD. Purposive sampling was used to obtain participants, in accordance to the inclusion and exclusion criteria. Six (6) face-to-face semistructured interviews were carried out. These consisted of 4 males and 2 females. A pilot study was carried out with 2 participants (1 male; 1 female). Results: After analysing the data, 4 superordinate themes emerged: (a) towards a dementia diagnosis, (b) experiencing losses, (c) relationships with family and friends and (d) life goes on. Respective subordinate themes emerged. The experiences of the older persons may have varied from each other, showing how important it is to hear the whole story from the OPLWD, and that each lived experience is unique in its own way. Conclusion: This study proved to be significant as there is dearth in international literature, and no local research study, on the first-hand lived experiences and expectations of OPLWD. This study gave OPLWD the opportunity to share their feelings, experiences, needs and struggles, and provided a richer understanding that took into consideration the symptoms of dementia as they are lived, articulated by the OPLWD themselves. Recommendations were provided to policymakers, institutions and to healthcare professionals, with the aim of empowering the OPLWD and offering more support.