An ageing population in the UK is resulting in an increasing prevalence of dementia. There are about 850 000 people diagnosed with dementia in the UK, with numbers set to rise to over 1 million by 2025 (Prince et al, 2014). Many of those affected have multiple comorbidities that may include stoma formation resulting from bowel resection surgery.
Patients with stomas fall into two categories:
Each scenario brings challenges for the patient and their carers and families.
Symptoms associated with dementia, such as memory loss, communication difficulties, attention and concentration deficits, difficulty learning and retaining skills, can all add to the challenges faced by ostomates and nurses in stoma management.
Although some people with dementia can process information, many individuals who have a stoma will struggle to maintain independent care. The impact of dementia for an ostomate affects their quality of life. It also has an impact on their family and carers.
For the established ostomate, continuing ability to self-care may become limited. For the person with a new stoma, the ability to learn and retain the skill of managing their stoma will be impaired (Powell, 2013). This loss of independence may result in the need for a move to residential care.
Behavioural symptoms
Issues associated with stoma care are not limited to the individual (Black, 2011). The whole team, which will include family members and formal carers, requires education and support from specialist stoma services (Powell, 2013). Carers of people with dementia and a stoma may face associated behavioural symptoms, including fiddling and inappropriate removal and disposal of the stoma pouch (Black 2011; Colostomy UK 2017). Agitated and distressed behaviour may be the person's attempt to communicate that they have pain or discomfort. Pain can also affect a patient following stoma formation surgery.
At the Royal Wolverhampton NHS Trust the dementia team has introduced the ‘Ouch’ campaign to raise awareness and understanding of the experience of pain in dementia. The campaign encourages the health professional to Observe, Understand, Communicate and Help and improve clinical practice in pain management.
Behavioural and psychological symptoms due to pain are often mistakenly interpreted as being due to dementia rather than patients' inability to communicate pain.
Education
It is important to ensure that where possible and appropriate, established ostomates maintain their level of independence in managing their stoma care (Colostomy UK, 2017). It is equally important to educate the person with dementia and a stoma to promote and maintain a level of independence, enabling them to stay in control.
When attempting to educate a person with dementia about stoma care a person-centred approach is important (Powell, 2013). A quiet, familiar, relaxed environment without distraction may benefit the ostomate (Black, 2011; Colostomy UK, 2017). Continuity in the 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.
Tasks should be brief, manageable, involve repetitive steps (Black, 2011), and clear, concise communication should be practised.
Practical suggestions to avoid the individual fiddling with the stoma bag include adapting clothing, for example, the use of net pants under normal underwear and tucking a vest or shirt into pants, trousers or skirts (Colostomy UK, 2017).
Appliance choice
Choice of stoma appliance is important. An uncomplicated one-piece pouch or a two-piece bag to protect the skin might be more appropriate, especially if carers are involved, depending on individual needs (Colostomy UK, 2017).
An opaque appliance might divert attention from faecal output (Black, 2011). Timely bag changes based on the individual's bowel routine will avoid it becoming heavy (Colostomy UK, 2017).
Knowledge of the individual along with time, patience and consistency is required to help maintain quality of life.
Professional support
Continuing support for people with dementia and a stoma is paramount. A multiprofessional approach is of utmost importance, as is staff training.
Documents such as the ‘About me’ in-house booklet used at Royal Wolverhampton NHS Trust for people with communication difficulties, should be introduced at the beginning of each patient experience for continuity of care.