Pads in bags - including people affected by incontinence

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 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 practice.

Preparation

Alzheimer's Society's Dementia Voice team received feedback that some people with dementia are reluctant to get involved in things they would like to do, or 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. 

What happened

Individual and small group conversations with people affected by dementia explored some of the challenges and ideas for what might help to encourage and reassure people that their needs would be met.  The sample of people spoken with included people who had disclosed that they are living with dementia and incontinence, other people with dementia, family and supporters of people with dementia.

The challenges people described experiencing included

• not noticing their pad is full. 

• staff not talking about incontinence or prompting people about using the toilet so not knowing whether staff would feel able to do this where it would be helpful for a person with dementia.

• change of routine by going out to occasional or one-off activities 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 up a particular 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, and even though they might use dementia-friendly signage to indicate routes to and from toilets.
• organisations might offer to reimburse reasonable transport expenses such as trains, without any suggestion that they would make reasonable adjustments for a person affected by incontinence. People with dementia who do not have the option of using their own private cars to and from events, may be scared of using trains and buses when 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

People with dementia identified some ideas for solutions. They said

• it would be good if events for people affected by dementia would routinely include providing spare pads that people can help themselves to in the toilet areas.
• 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 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. 

Dementia Voice team tested some ideas for solutions.

• the team provided incontinence pads in toilet areas at Alzheimer's Society's annual conference 2019.
• the team introduced 'pads in bags' in regional meetings and events for people affected by dementia.
• the team began to include talking about incontinence as a routine part of staff training on how to involve people affected by dementia.
• the team took part  in World Continence Week 2019, championing the needs of people affected by dementia and incontinence, and 'pads in bags' in Alzheimer's Society's internal communications.

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

• there was appreciative feedback and pads were taken where left for people to help themselves if they needed them.
• the 'pads in bags' repeatedly 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 said 'What a brilliant and simple idea. Thank you so much for sharing this. 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, and in Employee Forum and Yammer conversations, have said that they want to do more to help people affected by dementia and incontinence. 

Learning points

• 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. A pack of 42 pads cost about £10 in June 2019. 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 5 pads per event - which has proven to be sufficient with just one or two pads being taken each time.

• Check that venues 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.

Key contacts to find out more

Dementia Voice Team, Alzheimer's Society.

Email: [email protected].

Useful links

Free 'Just can't wait' continence card

Toilet problems and continence - Alzheimer's Society factsheet

World continence week