‘This is my life and I’m going to live it’: a grounded theory approach to conceptualising resilience in people with mild to moderate dementia

Abstract

Background: Interest in resilience has rapidly increased over recent years because of its potential impact on health, well-being and quality of life. However, despite the increasing prevalence of dementia, there is a lack of resilience research involving people diagnosed with this condition. Therefore, little is known about what it is that enables people to live well with dementia and continue to lead successful and meaningful lives. Even small delays in the onset and progression of dementia have the potential to significantly reduce its global burden. More specifically, studies have shown an association between social engagement and reduced risk of cognitive decline and incident dementia and consequently there is growing interest in the effect of increasing social interaction on cognition. Objectives: This thesis comprises two parts. Initially, a systematic literature review summarises and evaluates the current empirical evidence to establish whether interventions which aim to increase social interaction can improve cognition in older adults. Secondly, a qualitative study aims to develop a grounded theory of the concept of resilience in people diagnosed with mild to moderate dementia. Methods: For the systematic review, a comprehensive list of electronic databases was systematically searched, relevant authors in the field were contacted and a hand search of relevant journals was conducted. For the qualitative study, seven semi-structured interviews were conducted with people diagnosed with dementia, with a social constructivist version of grounded theory informing the collection and analysis of data. Results: 17 studies met eligibility criteria for the systematic review, mostly of moderate quality. Study heterogeneity and methodological variability made it difficult to determine the specific contribution of social interaction to cognitive improvements. There was, however, tentative support for improvement in semantic fluency. The results of the qualitative study propose a model which hypothesises resilience is a process of ‘overcoming dementia’. For participants this meant maintaining a sense of pre- and post-diagnostic continuity which was achieved through a complex interaction of their approach to life and acceptance of dementia in conjunction with spousal and other social support. Conclusions: Although the systematic review found some evidence increased social interaction can improve cognition in older adults, this finding is tentative and should be interpreted with caution, with further research warranted. The qualitative study proposes a model of resilience which explains the process of ‘overcoming dementia’. Resilience is conceptualised as comprising individual, social, community, societal and cultural aspects and opens up the possibility of promoting resilience in people with dementia through the development of psychosocial interventions. This study emphasises the strengths and abilities of people with dementia, as well as the importance of social support, but most importantly it is from the perspective of the person with dementia.