'Pads in bags' - supporting people affected by incontinence

Incontinence can stop people getting involved in the community. This project was about helping people to have a say in how their continence needs are met.

The purpose

Incontinence is very common, especially as people get older, and in people with dementia. Fear of 'having an accident' may deter people from getting involved in and being actively connected into their community.

The purpose of this activity was to learn from people affected by dementia and incontinence about how to reduce barriers to getting involved in things they would like to do, and to develop inclusive practices.

Alzheimer's Society's lived experience team received feedback that some people with dementia even fear leaving their homes for any length of time, in case they might have an incontinence-related accident.

The team decided to work with people with dementia to learn more about the issues and to identify some quick and simple inclusive practice to help. 

Exploring the challenge of incontinence and dementia

In individual and small group conversations, people affected by dementia discussed some of the challenges they faced and ideas about what might help to meet their needs. 

The sample of people consulted included individuals who were living with dementia and incontinence, as well as other people living with dementia, family members and carers of people with dementia.

The challenges people described experiencing included:

  • Not noticing their pad is full.
  • Care staff not talking about incontinence, leaving people unsure whether they'd would be able to support if asked.
  • Change of routine may be associated with missing prompts that help avoid having accidents at home.
  • Forgetting to take a spare pad to meetings or events.
  • Not knowing where to dispose of used pads. While 'ladies' toilets and 'disabled' toilets often do have bins for clinical or sanitary waste, those for 'gents' often do not provide anywhere to dispose of full pads.
  • People with dementia may be relying on carers or family affected by incontinence to travel with them. Getting their needs met may make the difference for whether or not the person with dementia is able to take the same opportunity.
  • Organisations inviting people to get involved usually do not ask about incontinence, even though they might ask about diet, mobility, visual or hearing difficulties. This was despite the use of dementia-friendly toilet signage within the organisation.
  • Organisations did not make reasonable adjustments for a person affected by incontinence. People with dementia who do not have the option of using their own car to attend events may be scared of using trains and buses as they cannot be confident about being able to get to toilet facilities. 

The team found out about what people might reasonably expect when accessing organisations.

  • Incontinence pads are a type of 'sanitary waste'.
  • Businesses in the United Kingdom have to provide sanitary waste facilities for their staff and for any public - or guest - toilets.
  • Environmental regulations make it an offence to flush incontinence pads and other sanitary waste down toilets. Operators of any commercial premises must make sure that suitable alternatives are provided, that is, waste bins for sanitary waste.

The results

  • It would be good if events for people affected by dementia would routinely include providing spare pads in the toilet areas, so that people can help themselves.
  • It is really helpful when venues have sanitary/clinical waste bins in all the toilets.
  • It would be good for people with dementia come to expect that organisations, such as Alzheimer's Society, are inclusive of people with incontinence. 
    This would enable more people with dementia and incontinence to feel able to get actively involved in things that matter to them.
  • It would be good for staff and volunteers to have the confidence to talk about incontinence, to remind people there's an opportunity to use the toilet, or to tell them if they notice their pad might be full or leaking.
  • Incontinence pads were provided in toilet areas at Alzheimer's Society's annual conference 2019.
  • A 'pads in bags' scheme was introduced in regional meetings and events for people affected by dementia.
  • Incontinence became a routine part of staff training, with discussions focusing on how to help involve people affected by dementia and incontinence in daily life.
  • On World Continence Week 2019, the team championed the needs of people affected by dementia and incontinence. They also promoted 'pads in bags' in Alzheimer's Society's internal communications.

The Dementia Voice team welcomed feedback on the solutions they were testing.

There was appreciative feedback and pads left for people to help themselves to were taken. 

These 'pads in bags' surprised and delighted people who found them when using toilets at meetings and events.

Most often people would use the toilets before meetings or events started and come into the room to tell everyone what they had seen - and how much they liked the idea.

Some people even tweeted photos of the bags to their followers to share about what a good idea they are and to encourage others to do this too.

An Advocacy Manager described this 'brilliant and simple idea' as

one of those ‘why on earth haven’t we thought of this before?’ moments.

What changed for people with dementia

  • Some people with dementia already known to staff disclosed for the first time being affected by incontinence.

    They said that they were pleased that incontinence was now being dealt with openly and pro-actively.

    They welcomed the chance to have their continence needs taken into consideration when planning their involvement in meetings and events.

  • Staff in training sessions have said that they want to do more to help people affected by dementia and incontinence. 

Key learnings about the solutions

What pads to put in the bags:

  • Unisex pads suitable for light through to heavy flow are commonly available from pharmacies, but may need to be requested at the counter as the packs are a bit bulky for some shop shelves. 
    The sort of small packs of pads usually found on shop shelves tend to be for just a few drops of liquid so not suitable.
  • Each bag of pads typically has five pads per event - which has proven to be sufficient with just one or two pads being taken each time.
     
  • Venues should have bins for disposing of pads in toilets men can use. Incontinence affects men too, but toilets only for 'gents' may not have bins provided in the way that such bins are routinely provided in 'ladies' and 'disabled' toilets. 
    The team found that venues were able to ensure bins were available to all guests, when requested as part of booking arrangements.

Categories

Toilet problems