Problems with continence are often cited as one of the worst aspects of caring and can lead to people with dementia being admitted to care home or hospital. However, we do not know very much about how common it is or how carers cope.
An NIHR study started with a review of evidence about incontinence and its management for people with dementia living at home but found little reliable evidence on the size of the problem. The authors therefore carried out a population-based study which was the largest of its kind. It used information from a large database of consultation records from nearly 500 practices. The analysis tracked 55,000 people with dementia over ten years and four times as many people in the general population of the same age and with similar general health.
The study found that there was at least a doubling of the rate of incidence of faecal or urinary incontinence among people with dementia than those without. In addition, people with dementia were more than twice as likely to have a urinary catheter. This could be investigated further, as use of catheters can be uncomfortable and lead to infection.
There were also higher rates of medication to manage incontinence for people with dementia. The team went on to look for evidence on effective strategies to manage continence for people with dementia living at home, including non-drug or surgery approaches. However, there was no high quality research on effectiveness of different strategies. They also reviewed local clinical guidelines for professionals on the management of incontinence and found little specific advice for people with dementia living at home and their carers.
An important part of the study was qualitative research with a number of stakeholders, including carers. Research with 32 carers gave important insights into the problems of dealing with incontinence. Carers were often reluctant to seek help for these issues, in part to protect the dignity and personhood of the person with dementia. Help from primary care professionals was variable. Effective containment of excreta was identified as a major problem, confirmed in another study tracking continence problems in dementia patients and their carers over time. Other work with health professionals identified lack of confidence and knowledge in providing appropriate continence advice and support.
These information gaps led the team to develop, with participation of experts and carers, a range of tools and approaches for better continence support. This included testing the appropriateness of continence pads to contain excreta and developing and testing a continence assessment tool for use by community nurses and other primary care professionals.
This NIHR study shows just how common continence problems are – about twice that of the general population. Yet carers are often reluctant to seek help. A key message from the study was for health professionals to ask at every contact about continence problems and how they could help.