Living at home with dementia and incontinence: A qualitative analysis of patient, family carer and health care professionals’ perspectives

Abstract

Background People 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. Methods Using 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. Results 45 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. Conclusion Far 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.

Perceptions and help‐seeking behaviours among community‐dwelling older people with urinary incontinence: A systematic integrative review

“…Thus, older people were reported to adopt a variety of strategies to conceal their UI such as denial, restriction of fluid intake, using continence pads without professional assessment and guidance, and resistance to and disengagement with care (McKenzie et al, 2013; Ostaszkiewicz et al, 2012; St John et al, 2013). These strategies are associated with potential risks in UI management, for example, restrictions to fluid intake and inadequate use of continence products may be associated with dehydration and uncontained UI or even continence pad‐related complications and problems (Cini et al, 2019; Murphy et al, 2020). Health professionals and aged care workers have a key role in assessing older people's need for incontinence pads, enabling them to use appropriately and minimizing risks of skin damage, odour, embarrassment and leakage (Nazarko, 2015).…”

“…These strategies are associated with potential risks in UI management, for example, restrictions to fluid intake and inadequate use of continence products may be associated with dehydration and uncontained UI or even continence pad-related complications and problems (Cini et al, 2019;Murphy et al, 2020). Health professionals and aged care workers have a key role in assessing older people's need for incontinence pads, enabling them to use appropriately and minimizing risks of skin damage, odour, embarrassment and leakage (Nazarko, 2015).…”