Towards advancing dementia friendly communities in the Maltese islands : the case of San Lawrenz ‘dementia-friendly’ community pilot project

Abstract

Background: As the world’s population ages, more older persons are diagnosed with dementia. No cure exists for this disease, and its impact on the lives of those afflicted by it are life changing. Those with severe dementia lose their ability to engage in activities of daily living and end up completely dependent on others to survive. While transferring older persons living with dementia (OPLWD) to nursing homes could be considered as a longterm solution, it turns out to be a very costly option apart from the fact that OPLWD prefer to stay in the community where they are usually informally cared for by their family members. As a result, informal caregivers are subjected to caregiving pressure which could have a heavy toll on their health. Awareness of these challenges has increased throughout the past years with the emergence of the notion of the dementia friendly community (DFC) which implies the development of communities into becoming dementia friendly to cater for the needs of OPLWD and their informal caregivers. This study focused on the first DFC project in Malta, that is the San Lawrenz Dementia Friendly Community Pilot Project (SLDFCPP). Aims: This study aimed to analyse the impact that the SLDFCPP was having on the lives of OPLWD and their informal caregivers, considering that there was a dearth in literature about the said project and thus it was unclear if it was leaving any impact at all. Method: A qualitative approach – specifically an interpretive phenomenological analysis (IPA) – was adopted to obtain a deep understanding of the impact of the SLDFCPP, based on views as expressed by informal caregivers of OPLWD that were permanent residents in San Lawrenz. Purposive sampling was used to choose participants on the basis of the inclusion and exclusion criteria. In total, 6 semi-structured interviews were carried out with female informal caregivers. Results: 3 main themes – and several subordinate ones – emerged from the interviews. The main themes were: 1. the burden of care shouldered by informal caregivers, 2. concern over the well-being of the relative with dementia, and 3. awareness and impact of the SLDFCPP and dementia-care services. Conclusion: This study was significant as it was the first of its kind to obtain a picture of whether the SLDFCPP was having an impact on OPLWD and their informal caregivers. Basically, the informal caregivers that participated in this study saw limited impact from the SLDFCPP and showed a lack of awareness thereof as well as of the dementia-care services that were being offered in Gozo. Several recommendations were offered by the informal caregivers on how the project can be improved, and on the basis of this study’s findings, the researcher also provided a list of recommendations on how the lives of OPLWD and their informal caregivers can be improved.