In my practice I have observed that Ostomists who are living with dementia can become agitated and distressed when they see their Stoma appliance - the person may have had their Stoma for many years and managed independently to care for their Stoma on a daily basis. In the course of their dementia journey the Stoma becomes an ‘unknown’ and every time they see or feel their pouch it can be a frightening experience for them. This leads to agitation and the repeated removal of the Stoma appliance.
Background I searched on the FabStuff website for solutions that people had found to help reduce agitation in people living with dementia. I found Twiddlemuffs https://fabnhsstuff.net/2016/05/01/justdoit-twiddle-muffs/
Twiddle muffs have been found to provide a calming sensory experience for people living with dementia, giving them something to occupy their hands and minds.
I also saw Twiddle Muffs in use within the dementia care team, so I discussed this with them and began to understand how they helped reduce agitation. Also care staff in care homes spoke about how easily blankets fall to the floor and can therefore be a trip hazard.
Using the information I had gained , I thought that I could adapt this idea for ostomists living with dementia, avoiding the fear and agitation that leads to inappropriate and frequent removal of their Stoma appliance.
ActionI designed a twiddle belt/apron. Made from washable material and for a single individual.
I have made two designs:
* A knitted one which is like a muff, where the person can insert their hands to comfort themselves. It even has a soft Stoma pouch sewn at the bottom of the muff, so the person can feel and touch it in a calming manner.
* An apron which can be tied loosely around them like a standard apron
* I am currently working on a Twiddle quilt
Outcomes
We are about to commence a trial of the three types of twiddle muffs/aprons on the dementia unit to be used for ostomists who are becoming agitated/distressed by their Stoma appliance.
Trial protocols include single use, privacy and liberty implications and the discussion with relatives/family and the person living with dementia prior to commencement of use.
I will need to make many more of these garments and am currently in touch with a local womens groups that may be utilised in the making of knitted and quilted items.
I look forward to sharing the outcomes of the trial on its completion.