Within an ageing population, the number of people with dementia is rapidly increasing. Dementia is considered a global health issue affecting 44 million people worldwide (Alzheimer’s Research UK, 2015). Due to an increase in the prevalence of dementia, the number of informal caregivers is also rising, with life-partners most commonly taking on this role and facing the transition into a caregiving relationship (Balfour, 2014).
Historically, research has predominantly focused upon caregiver stress and burden and the biomedical model of dementia has prevailed (McGovern, 2011). Both of these approaches overlook relational and experiential lived experiences of dementia. This thesis aimed to understand the lived experience of caring for a partner with dementia, focusing on the impact upon the intimate relationship and identity of the person caring. Six women who were caring for their partner with dementia were interviewed and photographs were incorporated into the interview. The transcripts were analysed using Interpretative Phenomenological Analysis (IPA) and three superordinate themes were developed: ‘Loss and the Emergence of a New Present’; ‘Navigating a New Reality’ and ‘Becoming Devoured for Caring’.
The findings revealed the gradual loss and decline of a familiar relationship and partner through which a new partner and relationship emerged. The women were simultaneously experiencing loss whilst attempting to adapt to a new reality, which was challenging to adjust to and resulted in a complex array of feelings. Relationship roles were destabilised resulting in a lack of reciprocity and the familiar intimacy of the past was disrupted with a particular loss of sexual intimacy. In order to cope with their confusing and complex experience the participants tended to engage in a number of strategies, for example blaming their partner for their new behaviour and underplaying their overwhelming emotions. The women experienced a conflict between attempting to maintain aspects of their previous identity and gradually becoming submerged by caring for their partner. Participants tended to feel obliged to take on the caring role and perceived caring their duty as a wife, often resulting in a consumed and isolated position where their own identities disappeared as much as their partners’.
A number of important clinical implications have arisen from this research. Firstly, it seems significant for professionals to provide a containing space for caregivers to understand their defences/coping mechanisms, acknowledge their complex emotions and process loss. The aim would be to provide a space where feelings can be explored, perhaps leading caregivers to feel less overwhelmed and more able to adapt to their significant change (Auclair, Epstein, & Mittleman, 2009).
The Dementia Grief Model (Blandin & Pepe, 2015) is a theoretical model of dementia grief which is significant for the findings of this research and provides a framework for professionals. It acknowledges dementia related grief as a unique experience and highlights particular therapeutic interventions that are specific to working with dementia grief, for example tolerating difficult feelings and behavioural adaptations (Blandin & Pepe, 2015) that are relevant for the findings of this research.
Furthermore, it seems pertinent for services to support couples to adjust to change and maintain a continued sense of relatedness, enabling significant relationships to continue (McGovern, 2015). Supporting couples to co-construct new ways of connecting/relating allows for a redefinition of dementia by nurturing what remains, as well as acknowledging what has been lost (McGovern, 2011). Additionally, it is crucial for professionals to support caregivers to maintain alternative identities outside of the caring role. It does not seem adequate to support partners solely in their role as ‘carer’ but to help them maintain a sense of self-identity in order to prevent the consumption and isolation that was highlighted in this research.
Finally, it is vital that Counselling Psychologists challenge the existing dominant discourses that exist within dementia care of decline, despair and burden to promote new understandings. Challenging dominant discourses could have significant impact upon how future dementia care services are implemented and the findings of this research contribute towards the argument for services and professionals to prioritise experiential and relational experiences of caregivers and couples living with dementia.