The experience of providing care to those dying with dementia: family carers' perspectives

Abstract

It is widely reported that carers who provide care for a family member with dementia endure physical and psychological burdens. Not only do they fulfil an important role for the person with dementia but also for the wider society. This study explored the experiences of carers in Ireland who provide end of life care for a person with late stage dementia at home. Interpretative Phenomenological Analysis (IPA) was selected as a research design to ascertain how people make sense of their experiences. Semi-structured interviews were conducted with seventeen current carers and six past carers of a family member with late stage dementia. Four super-ordinate themes were identified which described the challenges faced by carers at different stages of their care giving journey: The experience of dementia grief; Parenting the parent; Seeking support; Death, dying and life after death. The provision of timely post-diagnostic support services for people with dementia and their carers is important. Information regarding services, signposting, counselling and psychological supports are key elements in the early stages of the disease (O’Shea & Monaghan, 2017). Information and training needs to be provided in a variety of formats (written, face-to-face and online) tailored to the needs of the person with dementia and their identified primary carer. In addition, accredited formal training in dementia care is a requirement for all medical, nursing and allied healthcare professionals at both undergraduate and postgraduate level. Dementia grief was experienced by carers as a result of a relationship change and an inability to recognise the person with dementia as their mother, father or spouse. A transition ensued resulting in the carer adopting a conflicted role of parent. Carers expressed a desire to provide care for the person with dementia at home until the time of death, however this required support at both individual and community level. Findings suggest that the burden of care leaves family carers’ poorly equipped for life adaptations after the death of the person with dementia. Therefore, pre-death support is required to facilitate a better post bereavement adjustment. While there is a growing trend towards an inclusive community approach to dementia care, the findings from this research have implications for the creation of dementia friendly communities across the country which will aid reducing stigma associated with the disease and help reduce social isolation for the person with dementia and their carer.