Incontinence, particularly faecal incontinence (FI) is distressing, humiliating and potentially stigmatising for any adult and managing another adult’s excrement can be difficult for care staff. It should be simple, shouldn’t it? We know the ‘simple measures’ required to enable people to manage continence. Yet the prevalence of faecal incontinence (FI) in care homes is estimated to range from 30% to 50%.
I worked on the FINCH study that was commissioned because the rates of FI in care homes varies widely and there is a perception among clinicians, with some evidence, that there need not be such high levels of FI and, in particular, a concern that people living with dementia in care homes may be experiencing preventable or reversible FI, possibly due to nihilistic attitudes that just accept the use of pads as the norm.
How do we learn from what we already know?
Though the study was funded from a health technology assessment angle, there was recognition that there was not a clear body of evidence so a realist approach was taken. This seeks to understand, develop and test, using a variety of evidence, theories of what works. It is clear there are a number of theories we could test; proper application of a protocol is all that is required, changing staff attitudes from thinking that incontinence is inevitable, perhaps staff just need better training, or we need more assessment from clinicians, or address constipation and if we sort that out then most of the FI we see will be resolved.
These sorts of ideas, more training, changing attitudes etc can be found in areas beyond continence, for example, reducing inappropriate anti-psychotic prescribing for people living with dementia in care homes. These studies have developed from resource intensive RCTs that proved practice could be changed to more pragmatic implementation programmes. Here there is transferable learning with researchers dealing with similar ideas of containment, and stigma. Health and social care staff don’t always know what to do, the resident as a person with dignity is ignored, it’s unpleasant work. There is an “easy “but unacceptable solution i.e. indiscriminate use of drugs for behaviours staff find challenging and pads for incontinence.
Another body of literature describing the day-to-day of care work gave insight into the delicate balancing work of frontline care staff working with limited staff and financial resources; the lack of value given to this staff group; the desire of most to give good care to those they are looking after and care home culture. Some of these small scale, qualitative studies have examples of approaches that could work (but it’s not ‘proved’). For example, techniques to support bathing or ‘morning care’ for people with dementia so that it is less distressing for all involved.
We used this evidence alongside the more direct evidence of trials of continence interventions in nursing homes to argue what needs to be in place to improve continence in care homes, e.g. how to support prompted voiding and validate the bodywork of junior care staff.
So what can we say?
Most care home residents with FI will be doubly incontinent, there is therefore limited value in focusing solely on FI or single causes such as constipation. Medical and nursing support for continence care is an important resource but it is unhelpful to create a distinction between what is continence care and what is personal or intimate care. Prompted toileting is an approach that may be particularly beneficial for some residents. Valuing the intimate and personal care work unqualified and junior staff provide to people living with dementia and reinforcement of good practice in ways that are meaningful to this workforce are important clinician led activities.
It’s not a new technology that we need most (or even a new intervention to roll out): We need to think about it differently and provide a supportive framework for staff to work within
Our review argues that continence care should be reframed as integral to intimate and personal care work for older people with dementia. Personal and intimate care requires a set of skills that can ensure care is responsive to the individual resident’s preferences and needs. These need to be formalised in job descriptions, taught to those who give this care (junior/inexperienced staff), and valued and supported by senior staff. Care home staff across different disciplines and grades need to have the opportunity to reflect on practice and learn from each other about how to promote continence. Where reflective practice is already part of care home practice, continence, FI, intimate and personal care and dementia care can and should be explicitly linked.