The Meanings and Experiences of Gratitude for People Living With Young Onset Dementia

Abstract

Gratitude is a character strength that predicts life satisfaction and has been found to be meaningful for older people living with dementia. The age someone develops symptoms of dementia impacts how people relate to and experience dementia. Young onset dementia is the development of dementia symptoms before the age of 65, and can present unique challenges. Gratitude has emerged serendipitously in young onset dementia research in the context of coping. Given the unmet need for tailored support for people with young onset dementia, exploring factors that may contribute to people with young onset dementia’s well-being, such as gratitude, is important. This study therefore aimed to explore the meanings and experience of gratitude for people living with young onset dementia. Nine people living with young onset dementia each took part in a semi-structured interview that had been developed in collaboration with a patient and public involvement group. This was an exploratory qualitative study, using Interpretative Phenomenological Analysis. Two overarching themes and six subthemes were developed to capture how participants cultivated and experienced gratitude, in order to live well. The theme ‘Gratitude as a cultivated approach to life’ included: ‘Acknowledging the challenges’, ‘Slowing down allows me to savour the moment’, and ‘Choosing a grateful mindset’. The second theme ‘Interpersonal gratitude’ included: ‘Feeling part of something bigger’, ‘Feeling seen and supported’, and ‘Sharing the thank-yous’. This study demonstrated that gratitude was a meaningful concept for people living with young onset dementia and had a role in fostering their well-being. Lived experiences of young onset dementia were connected to cultivating gratitude and this process often involved participants making an active choice to experience gratitude. Experiences of gratitude were largely interpersonal, with felt and expressed gratitude for relationships and communities, highlighting the importance of social support.