Understanding continence care in people with dementia

Dementia affects around 850,000 people in the UK and people living with dementia represent around 80% of people living in care homes. The likelihood of developing faecal incontinence (FI) increases with age but the reduced mobility and cognitive impairment associated with dementia increases the risk. Between 30 and 50% of care home residents living with dementia experience FI, putting them at risk of further health problems and reducing their quality of life. 

Despite the number of people affected by FI there is little evidence to guide care home practice on the reduction and management of the condition, and opportunities to prevent or reverse cases may be missed.

The NIHR Health Technology Assessment Programme funded a group of researchers from six universities, led by Professor Claire Goodman, to review the success of interventions that are already in place to manage FI in people with advanced dementia in care homes. Knowing what interventions to reduce FI are likely to work best, when and in what situation is difficult because FI often has multiple causes, some of which are linked to the individual’s situation and some to how their care is organised. This review provided a theory-driven explanation of the effectiveness of interventions that aim to improve FI in people with dementia in care homes. The FINCH study’s results have been published in the Journal of the American Medical Directors Association.

Professor Goodman, Professor of Health Care Research at the University of Hertfordshire, said: “We know that living with dementia is a risk factor for faecal incontinence and we know there are interventions that help to reduce and manage its impact.”

“This review considers what needs to be in place for these interventions to work well. It highlights the importance of valuing and supporting the staff who provide personal and intimate care for residents and assessing how a person’s experience of dementia affects their ability to be continent.”

The FINCH study’s realist approach can give decision makers a better understanding of the conditions in which interventions are carried out by care home staff and help identify the conditions in which they are likely to succeed.

Care home staff’s knowledge, person-centred approaches to care, and clinicians’ involvement in assessing possible causes of FI were important in preventing, reducing and managing FI. To achieve change in continence-related practice or resident outcomes, it is how staff can act on their knowledge and training and whether an intervention ‘fits’ into the everyday care work of a care home that are important.

As NIHR Senior Investigator Professor Goodman explained, “Dementia is a risk factor for developing FI. It is important to assess how a person’s dementia affects their ability to benefit from different types of intervention.”

The valuing of the intimate and personal care work that care home staff provide to people living with dementia, and the recognition of the challenges that arise when providing continence care, are what link evidence on best practice with care home staff’s capacity to implement practices that are likely to reduce and manage FI in this population.

The FINCH study forms part of a wider programme of research on living with dementia at home and in care homes, which collectively supports NIHR’s aim to improve care by undertaking applied research that is context-sensitive. This work supports frontline NHS and social care staff to change practice and investigate whether care and treatments are effective and provide good value.

As part of this programme of research on living with dementia at home and in care homes, the FINCH study’s results have informed a rapid review for NHS England examining how the organisation of care homes affects the uptake of healthcare innovation. This has subsequently led to the development of guidance to help commissioners and clinicians identify what needs to be in place for intervention uptake. The guidance has been published in the International Journal of Environmental Research and Public Health.

The study’s findings have also provided supporting evidence to inform the development of international recommendations on improving healthcare in care homes, which have been published in Age and Ageing. Professor Goodman explained that:

“This is an example of how research that addresses how care is provided can inform how visiting practitioners, care home staff and researchers can support research uptake and leadership.”

The NIHR has allocated funding to a further four research projects to help inform the care of people living with dementia (NIHR HTA awards 15/77/25, 15/10/11 and 15/130/73 and an NIHR HS&DR award NIHR127234) to help inform the care of elderly people in care homes.

The study was funded by NIHR’s Health Technology Assessment (HTA) Programme.

More information about the study is available on the NIHR’s Funding & Awards website.

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