What is dementia toilet obsession?

Understanding dementia toilet obsession

Dementia comes with many different symptoms and behavioural changes depending on the stage and type of dementia, but individual tendencies can also play into behaviours that develop as the condition progresses. Here, we are exploring toilet obsession in dementia, the common causes, signs to watch out for, and how it can impact daily life. Thankfully, there are ways to support loved ones with dementia who suffer from toilet obsession, so we will also share when you should seek medical advice, the resources available in the UK, and how home care could help.

At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global domiciliary care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about dementia toilet obsession, we can help.

What is toilet obsession in dementia?

Dementia is a progressive neurological disorder that causes symptoms like memory loss and communication issues, but physical issues can be a problem too, so many people with this condition require some form of help with personal care. You can learn more in our article: The Physical Symptoms of Dementia

One physical symptom they might experience is incontinence when the brain is unable to regulate bladder and bowel control as it once did. Dementia can also result in incontinence issues due to reduced mobility, forgetting to use the toilet, or having trouble identifying the signs that they might need to go. You can learn more about incontinence care in our article: Essentials of Incontinence Care for the Elderly

Sometimes incontinence issues could lead to anxiety around bathroom use, which can look like toilet obsession, however this could also happen to people with dementia who do not suffer from incontinence. Toilet obsession is when a person with dementia develops a fixation with repeatedly using the bathroom without the physical need to do so. This might look like:

Frequently asking to use the toilet
Making repeated trips to the bathroom in a short space of time
Displaying panic or distress if they cannot use the bathroom
Cleaning repeatedly, such as handwashing or wiping
Constantly asking to use the bathroom “just in case”
Becoming irritated when bathroom routines are interrupted
Avoiding social activities or outings based on fear of incontinence

People with dementia can have obsessions with a number of unusual things due to the condition’s links to obsessive compulsive disorder, or OCD. For example, eating inedible objects or shredding toilet paper. Since using the bathroom is a daily need, toilet obsession is a common one.

What resources are available for older adults with dementia and toilet obsession?

If your loved one is showing signs of toilet obsession, it can help to develop a better understanding of what might be causing this, and to enlist professional support from experienced caregivers who know the best ways to communicate with people with dementia and tend to their needs. It may help to look at information provided by the following UK organisations or charities:

The NHS has advice on all things dementia and the symptoms to watch out for
Age UK has information on dementia support in your local area, and managing incontinence if this is the underlying problem
Bladder & Bowel UK has a library of information on incontinence, and through them, you can apply for a Just Can’t Wait card which enables them to use any bathroom immediately while out and about
Dementia UK has many helpful articles on their site, including topics like how dementia can affect incontinence, and managing distress
The Alzheimer’s Society has a guide to toilet problems, continence and dementia
Your local council can offer a Care Needs Assessment to identify what your loved one is struggling with, and make recommendations

Professional home care services can step in to help with specialist dementia care, ensuring they are paired with a caregiver who has experience managing toilet obsession or similar issues

How can home care support older people with dementia who have toilet obsession?

Home care can be a huge help for families who aren’t sure how to manage a loved one’s toilet obsession. Through either visiting care or live-in care, a dedicated and knowledgeable caregiver can:

Assist with regular bathroom routines and personal care tasks if needed
Observe and report to the family or GP on their bathroom use patterns or any changes in behaviour
Reduce stress by reassuring them, acknowledging their feelings, and providing the support they need
Assist with things like medication management and mobility support at home
Help implement a structured routine to minimise confusion or worry about when they will next get to use the bathroom
Monitor them for any underlying medical issues that could be causing their toilet obsession
Create distractions to break unhealthy obsessions or patterns

Support their mental health if they develop a particularly unhealthy obsession with being near the toilet
Provide specialist dementia care that could help to minimise their symptoms and improve their quality of life

At Home Instead, our Care Professionals can provide person-centred dementia care using a programme that is City & Guilds Assured, and they are trained to create a care routine that focuses on the person’s needs while also managing any potentially damaging behaviours, such as toilet obsession.

What are the common causes of toilet obsession in someone with dementia?

Several psychological, cognitive, and physical factors could cause a person with dementia to develop toilet obsession. These include:

Incontinence due to medical conditions like urinary tract infections (UTIs) or constipation – a 2021 study found that urinary symptoms affect more than 50% of people with dementia
Certain medications, such as diuretics, that require repetitive toilet use
Fear of incontinence or embarrassment, even if this is not usually an issue
Fear of having an accident due to memory loss symptoms
Confusion and disorientation about when they last used the bathroom
Difficulty understanding time and body signals
Seeking comfort in their bathroom if this is a familiar location
Compulsive or repetitive behaviours associated with OCD that cause fixation
Damage to areas of the brain that manage impulse control and behaviour

Agitation and restlessness, which could cause a constant need to move around

What impact can toilet obsession have on daily life?

Going to the bathroom regularly is normal for someone who suffers from incontinence, but if someone with dementia is making repeated visits without a reason to do so, they may have a toilet obsession. This is likely to cause significant disruptions to the everyday life of both the person with dementia, their families, and any caregivers trying to help them create a routine for their day.

Repeated or prolonged bathroom trips could lead to:

Interrupted routines like mealtimes, sleep schedules or personal care tasks
Anxiety that affects other meaningful experiences, such as family visits
Increased stress and frustration for caregivers, as well as physical fatigue from constant mobility support
Social isolation which can cause loneliness in older adults
An inability to access medical assistance through the doctor due to reclusivity
Generally reduced wellbeing and quality of life

Becoming angry or frustrated by any OCD-related behaviours is likely to cause more tension between you and your loved one, so try not to get upset or stop them from using the bathroom. As with other forms of obsession, it is important to create a safe place where they feel comfortable talking to you or someone else about why they need to use the bathroom so often. Through deeper conversations (if possible), you can help them to identify triggers like anxiety or fear of incontinence, and take steps to help them, such as:

Focusing on reassuring them as much as possible that, when they really need to go, they can access the bathroom
Applying for a Just Can’t Wait card through Bladder & Bowel UK, which allows them to access bathrooms in shops and restaurants while out in their community – this could relieve their anxiety about not having a bathroom nearby when they need it, and reduce any social isolation issues
Creating a structured routine that helps them know exactly when their next bathroom break will be, to reduce uncertainty and therefore reduce repetition
Working to eliminate anything that might be causing agitation and leading to toilet obsession
Acknowledging any concerns they have instead of dismissing them, and responding with a focus on the best solution
Using simple, clear language and a calm tone to minimise any confusion they feel
Monitoring for underlying medical issues that could be causing a genuine need to relieve themselves often
Trying gentle distraction and redirection techniques to pull them away from their fixation if you know there is no physical need for them to use the bathroom, such as offering activities they enjoy or striking up a conversation you know interests them
Having patience and empathy as much as possible to preserve their dignity

When should you seek professional help for a loved one’s toilet obsession?

Managing toilet obsession in a person with dementia can be extremely challenging – not only can it disrupt daily routines, but it can be exhausting having to compromise with the person or repeatedly acknowledge their desire to use the bathroom when you know they likely don’t need to.

Professional help may be needed if your loved one’s obsession with using the toilet becomes more intense all of a sudden, as this could indicate an underlying medical issue causing them to feel like they need to urinate or have a bowel movement. If you notice a sharp increase in their bathroom visits, new panic or distress about bathroom routines, or sudden changes in their behaviour that could indicate a urinary tract infection or similar medical problem, book an appointment to see their GP as soon as possible.

It is important to let their doctor know if you notice additional concerning factors, such as signs of infection, a fever, or if they complain of pain, or burning during urination. In addition, if their behaviour and toilet obsession begins to affect their safety or wellbeing, this should be addressed – for example, if they are having frequent falls when they get up to go to the bathroom, or not drinking enough for fear of incontinence.

Professional home care can also help effectively manage the daily routines of people with dementia-related toilet obsession, and make this easier on families. At Home Instead, we take the time to match clients with a caregiver who will complement their personality and interests, who has experience with dementia, and who can find the balance between making them feel comfortable with bathroom access while also addressing the root cause of the problem.

We’re an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.