Caregiving, dementia and incontinence

Authors: Dr Joan Ostaszkiewicz, Dr Jessica Cecil, Dr Elizabeth Pascoe and Elizabeth Watt

When Maureen’s husband was diagnosed with dementia 10 years ago it represented a gradual but significant change in the dynamic of their relationship.

“Going from a relationship of being a wife, to being a carer, you need to get past that barrier. I think initially it was the grief. For a year or so, I was grieving the loss of my husband, the loss of his ability to look after himself and the loss of intimacy in our marriage.

Then my acceptance in saying, okay, this is where we are at, this is what I need to do, let’s just do it.

It does change, sometimes we can get into a pattern and there are glimpses of almost normal, but I have to be aware that anything out of the ordinary, out of the routine and it’s back to me being full time alongside him and there for everything”.

Over time, as her husband’s care requirements progressed, Maureen became aware that she needed to get more ‘hand’s on’ in assisting him with toileting and personal hygiene.

“But to start personal care, with his continence care needs, it was something! Sometimes, he is up five or six times a night, needing help every time to go to the toilet and get back in bed. He gets to the toilet, and he doesn’t know what to do. I must drop everything and be ready to help”.

Maureen felt she needed detailed practical and helpful advice about assisting with toileting and personal hygiene. However, even with the help of her sons, she couldn’t easily find the specific information she needed.

In 2021-2022 Maureen volunteered to be part of a research team developing a new online resource to help carers such as herself. Her involvement in the project enabled Maureen to share the carers lived experience of caring for her husband. Sharing her lived experience had the additional impact of validating her as a person.

“I found it an absolute breath of fresh air. I was being listened to, I felt supported and safe. I felt really validated as a carer; that I had something worthwhile to contribute. This life experience has not been wasted; I actually have a purpose. I can share what I’ve learnt in my time, it might help someone else down the track.

Being involved [in this project] was one of the steps for me to get back to living my life and doing something purposeful. It took me from, I’m no good, I’m just a stay-at-home carer, to now saying, hey, you’ve got something of worth, you can still do other things. That was a real confidence booster for me. I’ve been more inclined to make the effort and join church activities. The things that I used to do, I can do again in a different way”.

Maureen was a participant in an advisory committee comprising carers and health professionals. Their role was to advise the research team on the depth and breadth of content in the proposed free online massive open online course (MOOC) titled Caregiving, Dementia and Incontinence ¹ (https://www.futurelearn.com/courses/caregiving-dementia-incontinence/3). The course aims to optimise safety, respect and dignity, for both carers and people living with dementia.

The MOOC is a multimedia experience, with visual and audio learning tools, and a platform for social interaction with other carers. With no prior experience or qualifications required, participants can gain knowledge, skills and resources to assist with toileting, promote continence and manage incontinence in people with dementia.

The course is organised over five weeks and informs participants on:

• Coping with the lived experience and communication strategies
• The basics of bowel and bladder function
• Promoting healthy bowel and bladder function and assisting with toileting and hygiene
• Using continence aids and incontinence products, and protecting the skin
• Coping at home, out and about, and accessing information and support.

Since its initial release in August 2022, the MOOC has attracted more than 2,000 participants across 69 countries, far exceeding initial expectations. The MOOC has been very positively reviewed by participants. For more information and a link to enrol see the reference below.