Care about Continence Not just seeing the person… listening to them too!

People often talk about living with dementia as a journey and in many ways I too feel that I have embarked upon a journey of discovery and hopefully understanding.  Working with the Care Inspectorate has given me the opportunity to connect with a whole range of people who have a commitment and passion to change how we deliver care and support to people living with dementia and their families and carers.

I have also had the opportunity to meet and work with the members of the Scottish Dementia Working Group (SDWG) and the National Dementia Carers Action Network (NDCAN). My thinking and attitudes towards people living with dementia and their families and carers have changed significantly over the past two years and with this change comes a feeling that currently we are on the cusp of yet another breakthrough.

Person Centred Care leading to Citizenship

I have always considered myself to work in a very person centred fashion, seeing the person for who they are and the life that has been lived and experienced.  However, if I am honest, I think my expectations for their future was slim. Did I see on-going potential in the person living with dementia? Did I think of people living with dementia as equal citizens with rights? Or was my focus on the losses that the individual had experienced, be that the ability to drive, make decisions, or manage their own self-care. Seeing a person with dementia as citizen means that as a society we need to rethink how we support them to remain engaged and influence the world around them. This is not just best practice but is the right of the individual, not just if we have time, but every time!

Archie Noone from the SDWG recently joined us for a two day event in Stornoway, his contribution was invaluable and influenced the tone and ultimately the learning experience of those who attended. Archie was not there as token gesture, but as a vital component of the day, at the break it was Archie’s contribution that people were talking about and I am sure that it is him people will remember.

Care about Continence, a partnership experience

This was brought home to me very clearly in a recent project that we have been working on in the Care Inspectorate with a wide group of stakeholders.  My colleague Jackie Dennis is the Professional Adviser for Continence. She raised with me the increased rates of incontinence especially within the care home setting. We began to question and explore this and discovered that there was wide variability across services that did not match our expectations. We formed a working group and from day one the voice of the person living with dementia and family carers were an essential part of the conversation.  This has led to the development of a new resource “Care about Continence”.

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On the working group, Archie from SDWG and Christine, Lorna and Emma from NDCAN were joined by representatives from NHS Continence Advisors, Allied Health Professionals, care home staff, Scottish Care and University West of Scotland. We worked together to produce a resource that supports the rights of people with dementia and their carers and also follows best practice and current research.

Listen here to Archie Noone in this 3 minute film talking about his experience of managing his continence needs:

The resource will be launched in March 2015 and will include a useful pocket guide for people living with dementia, their families and friends and staff, as well as a DVD. The guide is written from the perspective of the person who is being supported.  Here is a sneak peak of the key messages.

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This guide is about how you can support ME to:

  • recognise when I need to go to the toilet, making sure I get there on time
  • find the toilet
  • get to the toilet either on my own or with some help
  • use the toilet once I get there
  • adjust my clothing and wash my hands after I have used the toilet
  • find my way out and return to where I want to go.

Staying continent for as long as possible while living with dementia and other long term conditions is something that I want to do, but I might need your help to do this.

It’s the small changes that can really help.

5 key messages

  1. Know me and what’s important in my life and do what’s best for me.
  2. Know me and how I communicate.
  3. What I need to stay continent and how you can help.
  4. Create an environment that supports me to be independent and promotes continence.
  5. Look for every opportunity to promote my continence –Be creative.

Follow this link to a 3 minute film to see Archie Noone get his message across in his own indomitable fashion:

Delivering the right kind of support for people and their families with dementia can only be done if they are fully included at the very start of projects and new models of working. I am immensely proud of this resource and grateful for how it has contributed to my own development. So, thank you to everyone on the group, you are all valued colleagues.  The skills and experiences that everyone brought to the table have truly shaped and influenced this resource.

So next time you are thinking about changing a service, or starting a new group ask yourself are you reflecting what really matters to people living with dementia and their families and carers, and how have you engaged with them?

Follow me on twitter @HeatherAHP and the Care Inspectorate @careinspect

Heather Edwards
Dementia Consultant

I joined the Care Inspectorate in January 2013 as a Dementia Consultant covering all of Scotland. My role is to promote improvement in dementia care and support in all registered care services, making sure that the voice of the person with dementia and their families and carers is at the heart of all that we do. I am an occupational therapist by profession with over 25 years experience working with older people both here in Scotland and America.