Your experiences of continence changes

[HarrietD]

Hi everyone,

Our Research Evidence team is working on a review looking at prevalence, impact and support for continence changes in people with dementia.

It's important for the team to understand the impact of continence, and the access and availability of services from people with lived experience of this.

They'd like to ask the following questions:

1. How did changes in continence impact you or your family?
2. Have you used any continence support services and if so, which ones and what was your experience with them?
3. What services/information would support you, or would have supported you, to cope with the continence changes better?

They'd appreciate your responses by 30th June. Thanks everyone

A quick note about confidentiality:

The information you share will only be used for the purposes outlined above. The team will not share any information that may identify you and will only report the demographics outlined in the request to illustrate their insights. If they would like to use direct anonymised quotes from your reply, one of the DSF team will contact you for your permission. You can edit or delete your response by 30th June. If you’d like to withdraw the information after this date, or you have any questions or concerns, please contact us at DementiaSupportForum@alzheimers.org.uk

 

[sdmhred]

1. It was a marker in change in role from daughter. I then became mother as I took care of that side of things.
It led to conflict as she didn’t think she needed the loo when I knew she did etc.
It shrunk our horizons when we went out as we needed reliable access to a disabled loo on a regular basis - often manic outings when realised one was closed or although disabled didn’t have accessible parking!
Led to sleep deprivation as up two or three times in the night to assist.
Had to plan my day around toileting needs.

2) Used continence service. Pretty easy to access here. Self referred and assessed over the telephone. Down side was that the net knickers never fitted and they send such a big quantity struggled to store it. Never enough night pads and had to supplement - it’s like saying you’ve run out of dressing allocation for your wound - pls bring ur own next time u attend A&E!

3) I wanted training on how to clean and wipe correctly. I looked online and there was very little and none of showed practically how to get to the hard tp reach bits.

We introduced humour which helped us both

 

[Pacucho]

How did changes in continence impact you or your family?

It came as a massive shock, something I wasn't expecting or prepared for.

Went from mum accepting carers for help to only wanting my help (as her son). If you asked my mum previously whether she would've wanted my help for personal care I'm pretty confident she would've said No. But her dementia changed everything and I was the only person she would accept. The emotions involved are enormous, and basically having to come to terms with your change in role.

Also, continence became an issue for mum because she stopped watching comedies on TV, because each time she laughed she became uncomfortable.

Also, eventually mum would no longer be able to tell when she needed to go, which made life even tougher trying to persuade her to go. Night time had to learn pretty quickly in respect of changing sheets every day, using mattress protectors, kylie sheets, lack of sleep a major issue, ....

Have you used any continence support services and if so, which ones and what was your experience with them?

Tried to use continence services but they were unhelpful. Insisted on providing pads which were inappropriate for mum, who pulled them out. Their communication was non-existent and I now wonder whether this was a tactic to not provide any help! Only listened if I raised an official complaint.

Had to personally fund pull-up pants which were a godsend, but very expensive.

What services/information would support you, or would have supported you, to cope with the continence changes better?

First of all it would be good if the so-called medical professionals gave prognosis on what may happen in the future to person diagnosed with dementia. This is sadly lacking, and in my view somewhat negligent. The family needs to know continence may become an issue.

Second any family carer support available must include such topics, including advice on what and how to do. As already mentioned I had to revert to the internet to figure whether what I was doing was correct.

Finally, I would recommend the Society create Family Carers ONLY Leaflets/Advice. Continence could be the first in such a series. You couldn't expect people diagnosed with dementia to read such advice, hence "Family Carers Only Series".