Living with husbands with a label of dementia. The experience and meaning of Punjabi Sikh wives.

Dementia and caregiving have received increasing research, clinical and political attention over the past forty years. However, such attention has been particularly focused on understanding the biomedical markers and interventions for dementia within majority populations. Little attention has been afforded to understanding alternative conceptualisations of dementia particularly from varying cultural and religious lens’. Existing research which has attempted to explore cultural understandings of dementia has done so in a homogenising manner and masked potential nuances between different cultures and religions. Research has also tended to shy away from exploring the impact of dementia upon spousal relationships. Given spouses (predominately wives) have been shown to deliver much of dementia caregiving this is an important area to illuminate, both for its clinical and moral implications. Taking in to account these two distinct gaps in knowledge, the present study aimed to explore the experiences and meanings of Punjabi Sikh wives in living with husbands who have a label of dementia. This study adopts a grounded theory methodology to explore the experiences of Punjabi Sikh wives living with husbands who have been given a diagnosis of dementia. Based on the accounts of eleven wives, a model was generated which revolved around the various processes associated with living with a husband with dementia. The emergent model consisted of three distinct, yet interacting theoretical processes, the wives’ responses, systemic responses and resistive responses. The wives’ responses centred around how they acknowledged, understood and ultimately lived with changes they experienced in their husbands and themselves. The systemic responses outlined the ways in which participants perceived their wider system to negate their responses through, ignoring, misunderstanding and denying the changes in their husbands. Finally, participants recounted their resistive responses against such systemic pressures. Based on the accounts of the participants, implications for clinical practice and future research are discussed