Dementia is a term used to describe the symptoms caused by the ongoing decline in brain function. It can cause memory loss, but can also affect how your brain functions, which can include how the bladder and bowel are controlled. The condition can cause issues with how you process information which can change how you feel and act as a result.
For example – someone living with dementia who sees a mark or visible scratch on the floor, may try to pick it up thinking it’s a physical object. They may get frustrated or further confused and upset as a result of not being able to perform this seemingly simple task. This can of course be upsetting for the person, as well for their family or carers.
Looking after a relative or friend with dementia can be a great strain and responsibility. It can become even more difficult if the person loses control of the bladder or bowel and is incontinent. This is not an easy problem to tackle and nobody has the perfect answer.
For the purposes of this article, it will help to better understand the different types of dementia in order to understand how continence issues can occur and how to deal with them.
What are the different types of Dementia?
Despite popular opinion, dementia is not a natural part of ageing, although the proportion of people over 65 with dementia is far greater than younger adults. It is a syndrome, or group of symptoms, which together cause a recognisable condition, commonly known as Dementia.
There are four main types of Dementia:
Vascular Dementia
There are around 180,000 people living with vascular dementia in the UK, which is the second most common form of dementia. The symptoms of vascular dementia depend on which part of the brain has been affected, as it is caused by reduced blood supply to parts of the brain which then become damaged. The condition is rare in younger people, mostly affecting those who are 65 and over.
Dementia with Lewy bodies (DLB)
This is where ‘clumps’ of protein form in the nerve cells of the brain, affecting function. Symptoms depend largely on which parts of the brain are affected, but can mimic those of Parkinson’s and Alzheimer’s making DLB more difficult to diagnose. Symptoms can be distressing as they can include hallucinations and hearing voices that aren’t there.
Pick’s Disease
Also known as Fronotemporal Dementia, or FTD, this type of dementia affects the foremost parts of the brain – the Frontal and Temporal lobes. The frontal lobe is responsible for emotional regulation and problem solving, which can result in personality changes. This can often be one of the first symptoms of Picks Disease leading to diagnosis. The temporal lobe processes memory and aids in visual processing, which is why people with Picks can experience issues identifying people. This can become distressing for carers and family members.
Dementia and Continence Issues
Not all people with Dementia people develop continence issues, so it should not be seen as inevitable. It is always a good idea to seek medical advice for incontinence as sometimes there is a simple medical answer (such as treating a bladder infection). Of course, people with dementia can become incontinent for any of the reasons that affect other people, such as constipation, weak muscles or an enlarged prostate gland in men.
It is normal for people with dementia to develop continence issues as their condition progresses. It can also be extremely challenging for the individual and the person caring for them to deal with, which is why it’s even more important to seek help.
Practical Help
The following are some practical suggestions that may help improve or avoid incontinence for some people living with dementia.
1 – Keep conversation relevant
People with dementia benefit from frequent reminders of reality. It is important to talk to them a lot. Use their name often and talk about everyday things – the day, date or time of day, the season or weather, the place, Christmas is coming etc.
2 – Use the senses to aid memory
For people with dementia, distant memories can be easier to recall than recent events. Someone who is unable to remember what happened yesterday may be able to hold a conversation about their childhood or wartime experience. Old records or photo-graphs may help jog the memory and aid with well-being.
3 – Repeat new information
If someone with dementia is to remember new information, it will have to be repeated in the same form, over and over again. They often function best if a fairly rigid routine is kept to – keep life as regular as possible and avoid too many changes (e.g. don’t keep moving the furniture around).
Continence can be especially difficult to manage in strange surroundings and special attention will be needed when they are out visiting new places, or surroundings which aren’t extremely familiar.
4 – Keeping to a routine
The person may simply forget to go to the toilet – they may either not notice that the bladder is full, or not realise that something needs to be done about it. Some people need frequent reminders to visit the lavatory. Others benefit from a regular habit – such as always going before or after meals.
Take meals and drinks at roughly the same time each day, so that the bladder is likely to need emptying in a predictable pattern. Keeping a record for several days may enable these times to be anticipated. Some people will become restless as their bladder nears its emptying capacity – they know that something has to be done but are not sure how or where to do it. Incontinence then follows. Watch out for these signs and use them in arranging the time of toileting.
If it is found that a person is often wet at about 11.00 am, then a visit to the lavatory at 10.30 am may prevent this. If the person is alone, it may still be possible to arrange for regular reminders to visit the lavatory throughout the day. Sometimes a neighbour is willing to call in; the district nurse may be visiting anyway. A telephone call from a carer who is out at work may help for some people; others can be reminded by a pre-set alarm clock or timer, providing they remember that the bell ringing means it is time to pass urine.
5 – Forgetfulness on the way to the toilet
Someone who starts off to go to the lavatory may forget where they were going on the way. Arrows and labels at the right height may help. If the person cannot read, a picture of a lavatory on the outside of the door may help them to go in the right door.
6 – Make it comfortable
People with dementia will often not tolerate discomfort very well. Make sure the lavatory is comfortable – warm, well lit, and with the pedestal at the right height. If it is too high, a block under the feet can make it more comfortable; if too low, raised seats are available.
A hand rail beside the lavatory may reassure a person who is unsteady and afraid of falling. There are now many toileting aids for people with dementia to help them retain independence for as long as possible. Sometimes someone will not pass urine even when sat on the lavatory – try running a tap to give the idea. If they need to sit for longer, a magazine may distract them and keep them sitting for a while.
7 – Different levels of functioning
Continence is often closely related to an individual’s level of functioning. The more active and involved they are, the less likely incontinence becomes. Someone who is depressed and isolated may feel they have no reason to try to be dry. Nice clothes, appearance and surroundings encourage the person to take more care and make the effort to be dry.
Clothes should also be easy to manage for toileting, for example, velcro fastenings may be easier than zips or buttons. Activities such as visiting a day centre can help keep someone stimulated and alert.
8 – Keep up a reasonable fluid intake
Fluid intake is important for people with dementia. Older people tend to produce urine constantly throughout the 24 hours, often having to get up several times at night, and they may take to wandering about in the dark looking for a lavatory. A commode or chamber pot by the bed may prevent this, or a low-voltage night-light may help. It is, however, a good idea to restrict drinks two hours before sleep.
9 – Look out for constipation
Faecal (bowel) incontinence is often caused or made worse by constipation. For immediate constipation relief, try to establish a regular routine for bowel motions. This may not be every day, as individuals vary. A warm drink at breakfast and then a visit to the lavatory 20 minutes later works for many people. A diet with adequate fibre (bran, fruit and vegetables) will help to keep the bowels regular.
10 – Support in your area
Local health and social services may offer a variety of forms of help. These may include the district nurse, visitor, health visitor, occupational therapist and social worker, day centres, day hospitals and relief holiday admissions to hospital or homes.
Financial help such as attendance allowance may be available if a person needs regular help with managing toileting – ask your social services for details. Specialist hospital services may be based in care of the elderly or psychogeriatric departments. Some voluntary organisations may also give help locally, e.g. Age Concern. Incontinence products should be available free of charge via district nursing services.
As a carer, you may be entitled to a Carer’s Allowance to cover costs if you regularly look after a family member, friend or neighbour who may be ill or have a disability.
Further Information
If you, any member of your family or person you care for are experiencing any of the problems mentioned in this article, you may wish to seek advice from your GP or local continence clinic. The continence clinics are run by the NHS and you don’t always need to be referred to a clinic by your GP, as some clinics will allow you to book an appointment yourself.
You can also read our article specific to Alzheimers Disease and Incontinence, with early and late stage advice and guidance.
Alzheimer’s UK have a wealth of information on the wider topic of Alzheimers and Dementia, and offer a checklist to see if you are displaying symptoms and aid conversations with your GP if you need to seek advice.