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Dementia and Continence

It can be hard to seek professional help for incontinence. Many people do so only at a point of crisis, as it may feel to the person with dementia like they are losing their dignity. Some may see incontinence as inevitable, but for many people with dementia, given the right advice and patience, accidents and incontinence can be managed or sometimes even cured.
The continence adviser will assess the person’s problems and how they are affecting their quality of life, as well as yours. It is common to be asked to keep a chart of toilet habits.
After a thorough assessment the continence adviser will write up a continence care plan tailored to the individual. This should include things that the person with dementia and any carer can do to help. It should also describe the support that professionals should provide, as well as follow-up and next steps.
The aim should be to cure toilet problems or incontinence wherever possible. This should be agreed with the person with dementia and their carer. In many cases, identifying and addressing practical issues, changing medications or making simple changes to lifestyle can help to achieve this.
In a few cases, the person may need to be referred to a further specialist. For some people, advice will focus not on curing but rather on containing the incontinence as comfortably as possible using aids.

What is the impact of continence problems at school?

Daytime continence problems can have a significant impact on self-esteem, wellbeing and socialisation, as well as learning for the children affected. School staff are not health trained and many do not understand that children can have a medical problem affecting their bladder and/or bowel and are often at a loss to know how to help. Rules around access to the toilet and drinks can adversely affect all children, but tend to have a disproportionate impact on those with continence difficulties and disabilities.

The role of the healthcare professional
This leads to the question of what can healthcare professionals working with children and young people do to support. There are some simple and fairly quick measures that can be put into place, which are likely to have positive effects:
Health visitors can discuss timely toilet training and explain issues around bladder and bowel health with families at developmental checks. They can play a positive role in alerting families to early signs of constipation and how to address these.
School nurses can be alert to signs of continence problems at school entry, provide first line advice and refer on if necessary. They can explain continence problems to school staff, ensuring that they understand that inadequate or dirty toilets, which provide poor levels of privacy and where poor student behaviour is unchecked, can discourage students from using them. This may result in pupils avoiding drinking and withholding urine and faeces during the school day. Schools should be encouraged to consider their policies with respect to access to water bottles and toilets during the day. Staff may also need explanations of normal fluid intake in school age children and to be reminded of the educational and health benefits of children being reminded and encouraged to drink regularly throughout the school day.

Bedwetting is the most common childhood continence problem…

Many children and young people affected have other continence problems. These include constipation, day time wetting, urgency (having to get to the toilet quickly) or frequency (having to go to the toilet more often than usual).
What a lot of people do not know is that bedwetting can and should be treated in all children over the age of five years. For children younger than this, simple changes might make a difference. Therefore all children with bedwetting should be helped to understand that:
Drinking well is really important to help the bladder work well
• Primary aged children should be drinking about 1.5 litres of water-based drinks a day
• Secondary school children should be drinking more than this and secondary school aged boys should be having up to 2.5 litres of water-based drinks per day
• Children should avoid fizzy drinks as these can make bedwetting worse, by irritating the bladder
• Children should avoid drinks with caffeine in them (tea, coffee, hot chocolate, cola and many energy drinks). Caffeine can irritate the bladder and encourages the kidneys to make more urine
Eating plenty of fruit and vegetables helps prevent constipation. Constipation may cause bedwetting, or make it worse.
• Children who are constipated should have this treated as part of the treatment for bedwetting
They need to try and wee just before going to sleep. This makes sure they start the night with an empty bladder and gives them the best chance of a dry night.

Healthy Ways to Combat Urinary Incontinence in Ageing

There is no magic cure to handling the onset of urinary incontinence. But there are many ways to manage it, and to live the life you want.

Bladder Control

While there are some conditions that aren’t responsive, the bladder can usually be programmed with exercise and training, like any other part of the body. Experts recommend training your bladder by setting a strict schedule for urinating (as in every hour or 90 minutes), regardless of need or urgency. As you do this, and exercise, you can expand the space between voids, until you are in more control.

Lifestyle Adjustments
There are a lot of things a person can do to make their bladder healthier, including:
• Weight loss
• Limiting alcohol
• Avoiding sweet or sugary drinks that put more stress on the bladder
• Less caffeine

Many people need to manage incontinence with adult pull ups and pads, furniture protection, creams to help irritated skin. But for many people, things like furniture pads or urinary irritation creams are not something to talk about, it’s something to avoid and shameful. But that shouldn’t be the case!

Accept that there are some changes you can make through exercise or lifestyle adjustment, and some you can’t. This doesn’t make an older adult less of a person or less capable. And it doesn’t mean they can’t live at home, by themselves or with a caregiver. It just means that there needs to be some adjustments.

Having urinary incontinence doesn’t mean an older adult needs to stop enjoying living. It just means they need to live differently. And that’s part of aging: making the right adjustments so that you can continue to live strongly, age where you want, and experience the life you want.

What is ‘normal’ for toilet training?

Toilet training is an area of normal child development that causes anxiety for many families. However, when a child has a disability it is an even bigger hurdle for parents and carers, although the children, particularly those with learning or sensory disabilities are not usually concerned.
Often families are advised that they should not worry about toilet training until the child appears to be ready for this stage of learning. However, there is no clear definition of what is meant by ‘being ready’. There are some signs that are quoted, such as knowing when their nappy needs changing, asking to wear normal pants, or asking for the toilet. Children do not often reach this stage by themselves and many will not understand that they should be doing something different from what they have been doing since they were born. For many, signs of readiness for toilet training are not present until the children have actually started a toilet training programme.
What is suggested
It is suggested that toilet training should be started early for most children, including those with disabilities. To toilet train a child needs to learn a set of skills including communicating the need to go, managing their clothes and learning to sit on the toilet or potty. With appropriate support children can start to learn these skills from their second year. Toilet training does not necessarily get easier as children get older – it might get more difficult if they don’t see why they need to change something that is working well for them.
If toilet training is delayed, for whatever reason, children should be offered assessment to ensure that their bladder and bowel are healthy. Children with disabilities are more prone to constipation, which may in turn cause bladder problems. Without assessment these problems may be missed.

Toilet training children with autism

Communication
Children who are on the autistic spectrum often have difficulties with understanding words, with non-verbal communication and with expressing their needs. This means that they may struggle with:
• Understanding the words for toileting and so may not understand what is expected of them.
• They may not have or be able to say the words to let others know that they need to wee or poo.
• May interpret language literally and therefore be confused by some of the expressions we use to describe weeing or pooing. E.g. going to the toilet is literally about going to a place. It does not describe doing a wee or poo.
Using picture cue cards and social stories may help overcome some of these issues.
Social interaction
Children who are on the autistic spectrum may not understand expected behaviour and may have difficulties with relationships. Because of this they may:
• Not be interested in being the same as, or doing the same things as others
• They may not learn by imitating other people, in the way that many children do
• They may not be concerned about being wet or soiled
Using rewards to motivate may help, discuss appropriate rewards with your child’s healthcare professionals. These should be something small that your child is interested in and which can be provided as soon as they have done what is expected of them.

Imagination
Children who are on the autistic spectrum may not use imaginary or social play, they may be rigid in their thinking and struggle to understand what comes next, which means that they struggle if their familiar routines are changed. This means that they:
• May assume that you know when they need help and not realise that they need to tell you.
• Changes in their routines are very confusing for them and may make them fearful or anxious.
• They may struggle to transfer knowledge: if they learn to do something in one place they may not realise that they should do the same thing in other places. E.g. if they learn to use the toilet at home, they may not realise they should do so at school as well.
Making changes slowly and gradually, with the support of picture cues or social stories may help them to feel safe and accept the changes better.
Sensory differences
Many children who are on the autistic spectrum have sensory problems. They may:
• be more sensitive than other children, or be less sensitive. They may have a mixture of increased sensitivity in some areas and reduced sensitivity in others
• have difficulty filtering sensory information that occurs at the same time. Most of us can ‘switch off’ to some information that we don’t need e.g. if there are lots of background noises when we are having a conversation, we can concentrate on the words being said to us and ignore the other noises. Children who are not able to filter information cannot ignore all the other noises, but also sights, sounds, smells etc. that are going on at the same time.
Try to think about how the toilet environment affects your child with their sensory need and try to make adjustments to help them. Your child’s occupational therapist may be able to make some suggestions.
How do these affect toilet training?
To be able to use the toilet appropriately and successfully we need to learn a series of skills, but learning these can be more difficult if children are on the autistic spectrum. Causes of the difficulties will vary according to how the autism affects them. Success with toilet training involves working out what is causing issues for the child and making changes to reduce the effect of the issues.
What can help?
Starting work on the skills for toilet training early is often successful as there has been less time for rigid behaviours and thought processes to become established.
Try to ensure that your child is having fruit and vegetables every day and is drinking plenty of water-based fluids. Fruit and vegetables help prevent constipation, which can delay toilet training. Good intake of water based fluids (about 1 ¼ litres a day for children aged 2-4 years and about 1 ¼ – 1 ½ litres per day for children aged 5-11 years) helps develop a healthy bladder as well as prevent constipation.

Encourage children to drink more water

Many parents complain that their children are reluctant to drink their drinks & say they do not feel thirsty. Not drinking enough can cause or exacerbate continence problems, as well as being the reason for headaches, feeling tired & struggling to concentrate.
What should my child be drinking?
Water is the best drink, as it does not contain any sugar or other additives. However, some children refuse to drink water. If this is the case for your child, you could try the following:
• Offer water from the fridge or add ice cubes to it
• Use very dilute sugar-free fruit squashes as an alternative
• Avoid offering your child fizzy drinks, except as a rare treat.
• Avoid giving your child drinks with caffeine in them, as it can irritate the bladder.
• More than 500mls of milk per day can exacerbate or cause constipation& may contribute to excessive weight gain.

How can I encourage my child to drink more?
Encouraging children to drink may be difficult, especially if they don’t feel thirsty. However, thirst is quite a late sign of needing fluids, so children should be drinking regularly – about six to eight drinks spread evenly throughout the day.
• Build drink times into your family’s routine.
• Make drink times fun: sitting together with a book or game & only read the next page or have your turn at the game when your child has had a few more sips. If your child won’t drink then put away the book or game until the next drink time.
• Let your child chose their glass, cup or straw, make it fun
• Start by expecting your child to drink only slightly more than they currently are & then gradually increase the amount you expect them to have until they are having about 1.5 litres per day.
• Some children manage better if given half a glass & told to drink it all; some do better if given a full glass & are asked to drink half of it.
• Measure out your child’s water in to a clean jug or plastic bottle each day, so they can see what they should be drinking. Pour all their drinks from that so they can see how well they are doing & offer them a small reward if they manage to drink it all.

How can I encourage my child to drink more when at school?
• Ensure your child always has a sports bottle of water for school each day. Make sure they bring the bottle home at the end of the day & offer them a small reward for drinking most or all of it.
• If your child enjoys cold drinks, fill the water bottle and put it in the freezer overnight. The water will stay cold as it melts at school the next day.
• Ask the teacher to build drink times into the day, or to allow the children to have their water bottles on their desks.
• Ask the teacher to allow the children to use the toilet when they need to. If your child thinks they will not be allowed to go to the toilet, they might not drink at school.
Other things to consider
Do not encourage your child to drink in the hour before they go to bed as this may cause bedwetting or make it worse. If your child has a bladder or bowel problem, making sure they drink well during the day can help.

Psychosocial disability, recovery & the NDIS

Psychosocial disability is the term used to describe disabilities that arise from mental health issues. Whilst not everyone who has a mental health issue will experience psychosocial disability, those that do can experience severe effects and social disadvantage. The NDIS will be supporting people with psychosocial disability that significantly impacts their life and is likely to be permanent.

The NDIS supports recovery and will tailor a support package to individual needs. If eligible for individualised NDIS support, it is anticipated that you will be provided with a commitment to lifetime support with your ongoing recovery journey. The NDIA defines recovery as “achieving an optimal state of personal, social and emotional wellbeing, as defined by each individual, whilst living with or recovering from mental health issues”. Sheehan Health work with a strengths & recovery model for all our Participants so you can live an optimal life.

Your NDIS Planning for Continence Management

You do not require a Continence Assessment if you are happy with your current products and management. If your goals have changed to your continence management this should be included in your plan and is best done in consultation with a Continence Specialist.

You need to specifically mention continence in your planning meeting or it will not be included.

Ask your NDIS planner or Local Area Co-ordinator to allow for a continence assessment and/or follow up review (approximately 4 hours therapy per annum) to be approved for you in your NDIS plan under the category Individual Assessment Therapy and /or Training (includes assistive technology)15_048_0128_1_3.

Continence aids and products you require will need to be included in your NDIS plan under Core Support: Consumables. The NDIS principles of ‘Reasonable and Necessary’ applies when it comes to a delegate approving prescription items.

Your NDIS plan is focused around you achieving your goals. You will need to express how your incontinence affects your goals as this is what the funding is related to. For example; if your goal is to return to employment, what continence requirements do you require to meet this goal?

A Continence Related Assistive Technology Assessment will document requirements in line with achieving your goals when conducted by an experienced Continence Specialist.

Finally, talk about incontinence at your planning meeting, if it is not part of your NDIS plan goal, it is not part of your plan.