Authors: Catherine Murphy, Christine Laine, Mandy Fader
Published: 2020-12-07
DOI: 10.1002/alz.040896
Source: Full article
AbstractBackgroundPeople with dementia are more likely than other people of the same age to experience bladder or bowel incontinence. This can be distressing and difficult to manage for both the person with dementia and family carers, potentially contributing to the breakdown of care at home. The aim of this work was to understand the range of problems that people face and their opinions on what could be done to better manage these problems and enable people to get on with their daily lives.MethodsUsing a semi‐structured topic guide, participants were interviewed about their experiences and views on the problems associated with living at home with both dementia and incontinence and the support that people would like to receive. People with dementia and family carers were invited via www.joindementiaresearch.nihr.ac.uk, dementia cafes and their nurses (dementia or continence specialists). Healthcare professionals (dementia care and continence care specialists) were invited via their employer. The interviews were transcribed and constant comparison techniques were used to interpret the data.Results45 people (27 family carers, 2 people with dementia and 16 healthcare professionals) took part. Many carers found coping with incontinence to be the most challenging part of their caring experience. They reported feeling unsupported, lacking information and expert advice, plus continence management product provision was often found to be inadequate. Dementia nurses reported little knowledge of continence care and continence nurses had not received any dementia specific training. When continence problems develop, carers generally rely on continence information from peers or product manufacturers. Many said they had initially viewed incontinence problems as a “red line” beyond which they would no longer be able to provide care. For some, this was the case, but others adapted to providing continence support. Many carers reported a distressing period of trial and error when learning how to manage with new onset continence issues.ConclusionFar more could be done to help support people to live well with the combination of dementia and incontinence. Currently there is little or no support or expertise available. There were two urgent priorities: Better information/advice and appropriate product provision.