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Inclusion of dementia in local continence guidance

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Information on continence for people with dementia living at home, and their carers, is often inadequate, so community nurses should review what is provided in their area


Evidence shows that people with dementia and their families and carers feel health professionals do not always adequately address needs surrounding continence. This article examines continence guidance from a range of trusts across England to find out if they include specific guidance relating to dementia.

Citation: Drennan V et al (2013) Inclusion of dementia in local continence guidance. Nursing Times; 109: 27, 22-23.

Authors: Vari Drennan is professor of healthcare and policy research; Laura Cole is a research associate; Sheila Donovan is a research fellow; all at Faculty of Health, Social Care and Education, Kingston University and St George’s University of London.


Dementia syndromes are degenerative and pose difficulties for both the person with the condition and family/carers. Current policies emphasise the need to support the person in “living well” in their own home for as long as possible.

Incontinence is known to be stressful for carers (Georges et al, 2008) and can be a strong factor in the decision to move into a care home (Luppa et al, 2008). Carers have reported that health professionals have little understanding of the issues and solutions for the kind of toilet use and incontinence problems they manage (Drennan et al, 2011).

This article summarises a published study that investigated whether the clinical guidance for community nurses addresses the types of toilet use and incontinence problems experienced by people with dementia and their carers (Drennan et al, 2013).


We looked at the policies and guidance on incontinence management and the provision of incontinence products that were provided by a sample of up to four community nursing services (CNS) in each of the existing strategic health authorities in England.

The policies and guidance were sought through searches on NHS websites of primary care organisations and by writing to continence nurse specialists in such organisations. We examined the documents specifically for material concerned with the problems of people with dementia and their family carers and any detailed guidance in relation to this. Our analysis was informed by the views of our advisory group, which included family carers of people with dementia.


We acquired documents (n=98) from 38 services across every region of England.

It was not always clear who had written the guidance, but it tended to be senior continence nurses. Most documents referenced national guidelines, for example those produced by the National Institute for Health and Care Excellence. Of the 38 services, only a third (n=13) specified dementia in their continence guidelines, and six more mentioned cognitive impairments as conditions to be aware of or to record the diagnosis of in the assessment process. There was little evidence that this led to subsequent advice specific to patients with dementia or to a tailored dementia care pathway.

Documents from the remaining 19 services (50%) made no mention of dementia or cognitive impairment.

Documents from three (8%) services stood out as having some detailed guidance about the management of incontinence for people with dementia at home. Two of these provided clinical advice and sample care management plans for people with incontinence and dementia, while the third provided detailed clinical guidance on “functional” incontinence, with a section specific to people with cognitive impairment, but not dementia specifically.

Ten (26%) of the services used an unattributed leaflet for family carers of people with dementia named Continence in the Confused Elderly, often amended with different pictures. We asked the family carers involved in our research to review this leaflet. They concluded that the tone and images were unhelpful and that the information on the leaflet could be improved.

Only one service suggested the family carer received a copy of the plan for supply of incontinence pads. None of the services offered a copy of the care plan to the person with dementia or family carer.

All 38 services described eligibility and suggested amounts per person of NHS- funded incontinence products.

Two services required the use of frequency and volume charts, which, as the family carers in the advisory group observed, may not be possible to obtain with a person with dementia.

Only one service mentioned the specific needs of people with dementia with regard to incontinence products, noting that a “pull-up pant” design could be made available for those not tolerating other designs. It also highlighted that dementia warranted the provision of additional continence products.

Another service specifically mentioned dementia as a circumstance when additional products should not be supplied, but further assessment should be undertaken to determine the exact problems.

Only one service recognised the difficulties people with dementia might have in remembering the process for getting incontinence product supplies delivered.

Discussion and conclusion

Our research identified some good examples of guidance that considered the specific problems of people with dementia and their family carers, but these were in the minority. Reference to this growing group in the community was absent from most documents and limited in the remainder.

The Royal College of Physicians (2010) has noted that continence services rarely involve service users and the carers on our advisory group found the information leaflet for carers, which was used by some services, to be problematic. Family carers of people with dementia could be an asset in developing sensitive, appropriate materials for other carers and also for community nurses.

Nursing clinical leaders for both continence and community nursing should review their guidance to ensure it addresses the problems of people with dementia living at home, and takes into account the needs of family carers.

Acknowledgment: This report presents independent research funded by the National Institute for Health Research (NIHR) under its programme grants for applied research scheme (RP-PG-0606-1005). The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. 

Key points

  • Policies emphasise supporting people with dementia in “living well” at home for as long as possible
  • Carers say health professionals tend not to understand the issues and solutions for toilet use and incontinence problems they manage
  • Only a third of local nursing service guidelines on continence refer specifically to caring for those with dementia
  • Continence services rarely involve service users
  • Family carers could be an asset in developing sensitive, appropriate materials for other carers and health professionals 
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