Incontinence is a highly distressing and stigmatising condition that affects up to one third of people with a dementia diagnosis in the community (1). The impacts extend to carers who describe a range of problems related to supporting the person to remain independent in toileting, including managing behavioural challenges, and containing and managing incontinence (2,3). Not all of the strategies carers trial are acceptable or understood by the person with dementia, particularly as dementia progresses (2,3). Despite this knowledge, there is limited research about carers' specific information and support needs, particularly family carers. As part of a larger study that involved co-designing and evaluating an online course about caregiving, dementia and incontinence, the aim of this project was to explore the information and support needs of people caring for someone with the dual diagnosis of dementia and incontinence.

A Project Advisory Group was established consisting of (i) three community-dwelling people with a MMSE > 18 and self-reported mild dementia and incontinence; (ii) eight family carers who supported them to manage incontinence or maintain continence; and (iii) eleven nursing home employees with experience of assessing or providing continence care to people with dementia. Information about the project was disseminated through social and media platforms to aged care advocacy groups in Australia. Aged care employees were recruited through professional and union groups. the group met online five times over six months. They:
•	Advised on the content of a course to support carers of people living with memory problems who require continence care
•	Commented on the suitability of current public information on this topic
•	Discussed the appropriateness of prioritising dignity as the main goal of care in the proposed course
•	Reviewed progress and commented on drafts of the course 
Information was collected in the form of notes taken by the researchers. Each researcher conducted open line-by-line coding of the notes and then the codes were compared for commonalities and higher order sub-categories. This constant comparative method approach facilitated the emergence of several recommendations which were synthesised with findings from a review of literature on dementia and incontinence to identify topics and related concepts.

Discussions with the PAG yielded several recommendations about caring for a person with dementia and incontinence. They included: 
•	Know the person and ensure you have their trust
•	Be flexible and anticipate changes in the person’s abilities/behaviours
•	Develop strategies to reduce frustration and anxiety for both
•	Anticipate and manage embarrassment of both
•	Know how and when to access appropriate professional help
•	Develop practical skills and information to manage ‘accidents’ in social situations
•	Know what to expect – i.e. what is normal function and how dementia impacts
•	Anticipate having to ‘problem solve’ challenges the person may experience
•	Develop strategies to minimise incontinence, particularly at night 
•	Ensure a diet that optimises bowel regularity
•	Learn to advocate for the person in encounters with the healthcare system to ensure alignment between the goals/needs of the person, carer and healthcare professionals
•	Anticipate the possible negative effects of changes such as changes in medication, surgery or respite care on the person’s continence and bowel and bladder function/control
•	Know how to access and use continence aids and incontinence products
•	Anticipate having to manage your own and the other person’s emotions
•	Be aware of the effect of constant watchfulness on your own health

The following five core topics and related concepts were identified:
1.	Coping with the lived experience
2.	Basics of bowel and bladder function
3.	Promoting healthy bowel and bladder function and assisting with toileting and hygiene
4.	Using continence aids and incontinence products and protecting the skin
5.	Coping at home, out and about and accessing information and support

Table 1 lists these topics and the related concepts that addressed these topics.

The strengths of this project were the use of co-design methods to explore a much neglected and stigmatised topic. The systematically collected information about carers’ information and support needs could reduce a trial-and-error approach to continence caregiving for this population. However, further work is required to ensure the issues identified reflect carer heterogeneity in terms of age, gender, culture, care recipients’ dementia severity, care setting, country, and other such key variables.

The project represents a novel method to identify the information and support needs of carers of people with dementia and incontinence. The information could inform educational interventions that are designed to improve quality of life, reduce carer burden and delay the onset of incontinence in individuals with dementia . For family carers, this could additionally augment efforts to support people with dementia to remain living at home as long as possible.

Grant R.L., Drennan, V.M., Rait, G., Petersen, I., Iliffe, S. (2013). First Diagnosis and Management of Incontinence in Older People with and without Dementia in Primary Care: A Cohort Study Using the Health Improvement Network Primary Care Database. PLOS Medicine, https://doi.org/10.1371/journal.pmed.1001505
Drennan VM, Cole L, Illiffe S. (2011). A taboo within a stigma? A qualitative study of managing incontinence with people with dementia living at home. BMC Geriatrics, 11:75.
Murphy C, De Laine C, Macaulay M, Hislop Lennie K, Fader M. (2021). Problems faced by people living at home with dementia and incontinence: causes, consequences and potential solutions. Age Ageing, 5;50(3):944-954. doi: 10.1093/ageing/afaa262

Continence 7S1 (2023) 101007
DOI: 10.1016/j.cont.2023.101007