Objects of hope: using object elicitation to open up conversations about hope for people affected by rarer forms of dementia

Abstract

AbstractBackgroundHope is an essential component of the human experience and can play a critical role in sustaining wellbeing and a good quality of life. It can seem somewhat at odds however with the dominant societal discourses around dementia, which, stemming from a biomedical perspective, are often (naturally) focused on deficits and decline. With recent promising developments in the field of therapeutic interventions, it is of timely importance to explore the concept of hope for those affected by rarer forms of dementia, charactersised by atypical symptoms and associated with unique challenges, for whom emerging treatments may be too late. Here, we explored the use of an innovative methodology – object elicitation – to facilitate conversations on this complex and sensitive topic with these underrepresented groups.Method17 people affected by dementia and primary caregivers took part in 3 facilitated discussions using object elicitation to explore the concept of hope within the context of rarer forms of dementia, including: familial Alzheimer’s disease, behavioural variant frontotemporal dementia, and posterior cortical atrophy. Transcripts of the discussions were analysed thematically.ResultFindings were organised into 4 themes: (i) Reframing and reconceptualising hope in the context of dementia; (ii) Temporality: from hopes for the future to finding hope in the moment; (iii) Hope for the individual and hope for the collective; and (iv) The other side of the coin: lost hope, false hope and barriers to hope.ConclusionThe findings of this study shed light on some of the challenges to sustaining hope for people affected by lesser known forms of dementia and importantly, their resilience and resourcefulness in finding ways to continue to cultivate a sense of hope during difficult times within their everyday lives. These findings have implications for others living with these conditions and the unpaid carers and health and social care professionals supporting them, and are of particular relevance in the context of current treatment developments. This study has also demonstrated the utility and accessibility of the object elicitation method for opening up and facilitating conversations about emotionally charged topics for people living with and supporting people with different diagnoses of dementia.