Toilet problems and continence

8. Professional support

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 GP should be the first point of contact. They should review the symptoms and any underlying medical conditions (eg urinary tract infection or constipation), diet or medications that might be causing the problems. The doctor may do an internal examination of the bowel.

If this assessment is unable to resolve the problem, ask for the person to be referred to a continence adviser. NHS continence services across the country are quite variable and you may have to be persistent to see someone who understands incontinence in people with dementia. You may have to wait for these services.
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 (such as diet, drinks and exercise) can help to achieve this.

In a few cases, the person may need to be referred to a further specialist (eg geriatrician, urologist or gynaecologist). For some people, advice will focus not on curing but rather on containing the incontinence as comfortably as possible using aids (see ‘Incontinence aids’ below).

Other health professionals can visit the person at home and offer support.

  • A community nurse can help with access to NHS-funded continence products and give advice on management of the problems, hygiene and how to protect the skin.
  • An occupational therapist can give advice on adaptations and equipment.
  • A physiotherapist can give advice if the person has problems with coordination or movement.
  • A community psychiatric nurse, Admiral Nurse or the community mental health team can help if behavioural changes are affecting how someone uses the toilet.

Speak to the GP about getting a referral to any of these professionals.