Understanding factors that affect carers’ experiences of continence caregiving

Many factors can affect carers experiences of continence caregiving.

People’s experiences of helping a person with dementia to maintain continence or manage incontinence vary enormously. Not only does the severity of the person’s dementia influence our capacity as caregivers so does the nature of the relationship.

How relationship affects caregiving

Our relationship with the person living with dementia may or may not allow us to broach the topic of incontinence and provide them with the degree of support we think they require. Carers have to find a way to negotiate the care tasks associated with incontinence that is acceptable to both them and the person for whom they are caring. This applies equally to formal carers (aged and home care workers) and informal or family carers.

Relationships characterised by warmth and trust support the type of caregiving that some people with incontinence require. However, not all relationships lend themselves to the type of care. When relationships are characterised by old unresolved conflicts and tensions, the care requirements associated with continence care often bring these to the fore.

Emotions associated with caregiving

Carers also have their own expectations of themselves. Carers are expected to project a capable and caring approach whilst they are trying to manage negative emotions. Researchers have found providing intimate hands-on care that includes touching, seeing, and smelling unpleasant body products is extremely difficult for most caregivers and care-recipients alike (Applegate & Kaye, 1993; Isakson, 2002; Wrubel & Folkman, 1997).

They found family caregivers experience a range of emotions associated with the caregiving task, including:

• Disgust at the need to handle body products such as urine and faeces
• Embarrassment at the care-recipients nakedness or need for help with basic bodily function
• Hurt from the care-recipients’ frustration and anger (Isakson, 2002).

Family caregivers typically attempt to conceal these emotions in an effort to protect care-recipients’ feelings of powerlessness and helplessness. Some carers describe trying to protect care-recipients’ feelings of powerlessness and helplessness and minimise their distress. In so doing, they develop strategies to avoid any further mishaps. They also describe become hypervigilant, ie alert to the possibility of incontinence or other triggers that can cause the person with dementia to become distressed.

The emotional labour carers perform when caring for a person with incontinence, and indeed, other difficult conditions and situations, mirrors a broader tacit expectation to manage feelings in order to create a publicly observable facial and bodily display of coping. To care for a person with incontinence, carers must find a way to ‘grapple’ with incontinence. This means dealing with their own and the other person’s emotions.

Becoming a carer can also change roles and relationships, particularly when caregiving involves intimate hands-on care continence care. Carers describe having to adapt to the role acquiring new skills and knowledge. For some carers, this change is sudden. For others, the role change is gradual. Carers tell us that it takes time to develop confidence to care for the person, to cope and to know how and when to seek help. Importantly, help is available.

Your task

Watch the video of Wanda and Maria as they share with us their personal experiences about changing roles when caring for a person living with dementia and continence issues.

Reflect on your own experience of caring.

What are some of the similarities with the carers in the video? What are some of the differences?

References

_{Applegate, J. S., & Kaye, L. W. (1993). Male elder caregivers. In C. L. Williams (Ed.), Doing ‘women’s work’: Men in non-traditional occupations, (pp. 152-167). Newbury Park, CA: Sage. https://dx.doi.org/10.4135/9781483326559.n9}

_{Continence Foundation of Australia. (2022). Caring for someone – Psychological impact. https://www.continence.org.au/life-incontinence/caring-someone/psychological-impact}

_{Isaksen, L. W. (2002). Toward a sociology of (gendered) disgust: images of bodily decay and the social organization of care work. Journal of family issues, 23(7), 791-811. https://doi.org/10.1177/019251302236595}

_{Wrubel, J., & Folkman, S. (1997). What informal caregivers actually do: The caregiving skills of partners of men with AIDS. Aids Care, 9(6), 691-706. https://doi.org/10.1080/713613223}