Practice question

How do I care for a person with a stoma and dementia?

Living with dementia and a stoma

Living with dementia and maintaining independent stoma care

An ageing population in the UK has resulted in the increasing prevalence of dementia. Many of those affected also live with multiple co-morbidities, which may include stoma formation resulting from bowel surgery. These individuals will fall into two categories: established ostomists who develop dementia and people with dementia who undergo stoma formation.

Twiddle muffs can be a calming, sensory distraction to occupy hands and minds. Picture: Chris Balcombe

Each scenario will result in several additional challenges for the person and those who care for them.

Challenges and consequences

Symptoms associated with dementia, such as memory loss, language and communication difficulties, deficits in attention and concentration, difficulty performing familiar tasks and problems learning and retaining new skills, can all add to the challenges of managing a stoma.

Although some people with dementia retain insight into their condition and are able to receive and process information, many will struggle to maintain independent stoma care. For the established ostomist, their continued ability to self-care independently may be eroded; for the person with a new stoma, their ability to learn and retain the necessary new skill will be impaired (Powell 2013). Ultimately, this loss of independence may result in the need for a move to residential care.

The issues associated with stoma care are not limited to the person living with dementia (Black 2011). The whole care team, including family members and formal carers, require education and support from specialist stoma services to equip them with the competence and confidence to take on this challenging role (Powell 2013).

Carers of people living with dementia and stoma may be faced with associated behavioural symptoms including fiddling, inappropriate removal and disposal of the stoma appliance (Black 2011, Colostomy UK 2017). Agitated and distressed behaviour may be a manifestation of the person attempting to communicate a problem such as pain or discomfort.

Practical management

Although not always possible, where appropriate it is important to ensure the established ostomist maintains their level of independence in managing their stoma care (Colostomy UK 2017). It is equally important to educate the person with dementia who has a stoma formed in order to promote and maintain a level of independence and control. When attempting to educate a person with dementia about their stoma care a person-centred, individualised approach is important (Powell 2013).

Consideration should be given to the environment: quiet and familiar surroundings without distraction may be beneficial (Black 2011, Colostomy UK 2017). Continuity in approach to teaching is important: some individuals may benefit from written instructions such as prompt cards or diagrams (Colostomy UK 2017), while others may prefer a more practical approach. Either way, tasks need to be broken down into small, manageable, repetitive steps (Black 2011) and communicated in a clear and reassuring manner.

Practical suggestions to avoid the individual fiddling with the stoma bag include adapting clothing, for example, the use of net pants underneath normal underwear and tucking a vest or shirt into pants (Colostomy UK 2017).

Attention should also be paid to the choice of appliance used. Dependent on individual needs, an uncomplicated one-piece bag or a two-piece bag to protect the skin might be preferable (Colostomy UK 2017). An opaque appliance might divert attention away from the faecal output (Black 2011). Timely bag changes based on the individual’s regular bowel routine will avoid it becoming heavy and uncomfortable (Colostomy UK 2017).

Coleman (2017) suggests the use of twiddle muffs, belts and aprons as a calming, sensory distraction to occupy hands and minds.

An in-depth, person-centred knowledge of the individual along with time, patience and consistency of approach is required to help maintain quality of life for a person facing the challenges of dementia and stoma care.


Julie Willoughby, nurse consultant dementia services, Royal Wolverhampton NHS Trust, Wolverhampton

Rebecca Fossett, colorectal cancer nurse specialist, Royal Wolverhampton NHS Trust, Wolverhampton

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