A Difficult Part of the Dementia Journey

Toileting changes can be one of the most difficult parts of caring for someone living with dementia.

A person who once took great pride in their hygiene may suddenly:

• Miss the toilet

• Forget to wipe

• Leave soiled clothing hidden

• Stand beside the toilet without using it correctly

• Lose awareness of smells or cleanliness

These changes can be confronting for everyone involved. But they are not necessarily about choice, laziness or not caring.

Dementia can affect the brain processes involved in recognising bodily signals, understanding the environment and completing familiar sequences of tasks.

Why Do Toileting Changes Happen?

Several changes associated with dementia can contribute to toileting difficulties.

A person may experience:

Reduced awareness of bodily signals

They may not recognise the need to use the bathroom until it becomes urgent.

Difficulty sequencing steps

Using the toilet involves several steps. Finding it, getting there, adjusting clothing, using the toilet, wiping and washing hands.

Dementia can make completing these familiar sequences increasingly difficult.

Visual-perception changes

The person may have difficulty identifying the bathroom or understanding where the toilet is.

Executive function changes

They may begin a task but struggle to complete all the necessary steps.

Changes in smell awareness

They may no longer notice odours or recognise that clothing needs changing.

Fatigue or confusion

When someone is tired or overwhelmed, familiar tasks can become even more difficult.

The Emotional Impact on Caregivers

The practical side of toileting is only part of the story.

Caregivers may experience emotions they don't always feel comfortable talking about.

You might feel:

• Embarassed in front of family or visitors

• Shocked by changes in hygiene

• Grief for the person you once knew

• Less physically or emotionally connected

• Guilty about feeling frustrated or uncomfortable

• Exhausted from constant cleaning and laundry

These feelings don't make you unkind.

They make you human.

Practical Ways to Help

Small changes can make toileting easier.

Create a predictable routine.

Consider offering regular toilet visits, such as after meals or at consistent intervals.

Use calm, simple prompts.

Rather than asking complicated questions, gently suggest what needs to happen.

Make the bathroom easy to find.

Good lighting, clear pathways and simple signage can help.

Consider adaptive equipment.

Depending individual needs, equipment such as grab rails or a raised toilet seat may improve safety.

Choose easy-to-remove clothing.

Simple clothing can make toileting easier and reduce frustration.

Keep the bathroom comfortable.

A warm, safe and uncluttered environment can help.

Avoid shame.

Accidents and toileting difficulties are not opportunities for blame.

Consider continence products when appropriate.

They can help manage accidents and protect comfort and dignity.

Don't Forget to Check for Physical Causes

A sudden change in toileting can sometimes be related to a health problem rather than dementia itself.

Possible contributors include:

• Urinary tract infections

• Constipation

• Medication side effects

• Other medical conditions

If there is a sudden increase in incontinence, strong-smelling urine, pain, confusion, fever or other noticeable change, speak with appropriate healthcare professional.

The Intimacy Layer

Toileting changes can also affect relationships.

A partner or spouse may experience feelings of:

• Emotional disconnection

• Reduced physical attraction

• Grief

• Discomfort

• Guilt about their own reactions

These feelings can be difficult to acknowledge.

But experiencing them does not mean you don't love the person.

Caregiving fatigue and love can exist at the same time.

Protecting Dignity Is Still Possible

The person you love may not always realise what is happening.

They may not understand why their clothing needs changing or why you are helping them in the bathroom.

That doesn't mean their dignity no longer matters.

Speak respectfully.

Offer choices where possible.

Keep your voice calm.

Give them privacy whenever it is safe to do so.

And remember that the person is still the same person `even though their needs have changed.

At The Memory Nest, we believe dignity, compassion and practical knowledge can coexist.

You are doing more than you may realise.

Be kind to them. And be kind to yourself.

Practical knowledge. Compassionate support. A kinder tomorrow.