The Caregiving 'Career'

    Caring is a dynamic process that changes over time and has been likened to a journey or a ‘career’ which is comprised of a number of stages. One author[1] describes the caregiving career of carers of people with dementia in a rather simplistic way as having three stages, namely: residential care-giving; institutional placement; and finally, bereavement. Another simple but more recent description of caring also uses a three stage model, comprising of the pre-caregiving phase, active caregiving and the post-caregiving phase.[2] However, I’m sure that any carer reading these descriptions will agree that these models fail to recognise the changes and transitions that occur within these stages and that caring is not as simple and straightforward as these models may suggest.

    Another model, this time based on the experiences of carers of people with chronic illnesses including cancer, Parkinson’s Disease and Alzheimer’s, was developed by Pfeiffer[3] and outlines seven stages of the caring career:

    1. Coping with the initial impact of being told the diagnosis
    2. To be or not to be… a caregiver?
    3. At-home caregiving – the long haul
    4. Considering institutional placement
    5. Caregiving during residential or institutional placement
    6. Death of the patent – grief and relief
    7. Resuming life, healing and renewal

    This model however, assumes that at some point or another all carers will consider institutional placement, yet we know that only a small proportion of people are actually admitted into a nursing or residential care home. Furthermore, Pfeiffer’s description assumes that caregivers will become carers as a result of a diagnosis but we know that this is not necessarily the case. For many individuals, becoming a carer happens so gradually, in that they do more and more for the care recipient as the need arises and often do not realise that they have become an unpaid carer. The other criticism that can be made of Pfeiffer’s model is that is assumes that once caregiving is over, that carers emerge stronger from the experience and resume their old life without problems or grief. Again, any former carer reading this will know that this is not an accurate portrayal of real-life experience.

    The model I have developed of the caring career presents a more detailed and inclusive model of care, which reflects the changes that happen overtime. It is based on the experiences of carers of frail older people who did not have dementia or other cognitive impairment.[4] It includes nine stages of caregiving including a time when carers are ‘going it alone’ with no formal services to support them, a stage that I am sure the majority of carers will recognise and remember. These stages are:

    1. Dawning realisation
    2. Adopting the carer role
    3. Going it alone
    4. Gaining expertise
    5. Sinking or swimming
    6. Accessing services
    7. Carers as client
    8. Continuation of caring
    9. New horizons

    What all these models have in common is that they identify a post-caregiving stage of carers’ careers. Authors may attach different labels to it, but the post-caregiving stage is an inevitable part of a caregiving career and may come about as result of different sets of circumstances. For example, the post-caregiving stage can be due to the death of the care recipient or to an admission to a care home. It could also be due to the care recipient recovering their health or even another person resuming responsibility for providing care. So we cannot assume that every former carer has been bereaved.

    However, in terms of policy and practice, the post-caregiving stage has been overlooked due to the focus being on carers who are still actively providing care. Thus relatively little has been written about this stage of caregiving compared to the huge literature that outlines the experiences, needs and the impact that caregiving has on the health and wellbeing of carers It is essential that this gap in our knowledge is filled and so the next post will outline what others have discovered about the post-caregiving stage.

    References

    Cavaye. J. (2006) Hidden Carers, Edinburgh, Dunedin Academic Press.

    Pfeiffer, E. (1999) Stages of caregiving, American Journal of Alzheimer’s Disease, vol. 14 (2): 125-127.

    Pearlin, L., Aneshensel, A. (1994) Caregiving: the unexpected career, Social Justice Research, Vol. 7 (4): 373-390.

    Ume, P., and Evans, C., (2011) Chaos and uncertainty: the post-caregiving transition, Geriatric Nursing, Vol. 32 (4): 288-293.

    [1] Pearlin (1994)

    [2] Ume (2011)

    [3] Pfeiffer (1999)

    [4] For more information on this please see Cavaye (2006)

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