This Dementia Action Week we want to celebrate Rosie Joustra, who draws on our support and is employed within our Health Team
Rosie’s contribution to MacIntyre’s dementia work has been monumental in so many ways, both professionally and personally. We want to share a snapshot of this with you in this blog to celebrate all Rosie has and continues to teach us about dementia.
Working with Rosie
Rosie began working with our Health Team in 2016/2017 during our 2-year Dementia Project. Rosie was initially employed as a ‘Dementia Project Assistant’, alongside self-advocate Rachel Silver, and after the Project ended Rosie and Rachel’s roles were changed to ‘Health and Wellbeing Advisors’.
Rosie’s work has included public speaking, supporting with resource creation, attending events, and being a real driving force for championing the voice of people with a learning disability in all of our Health Team work. This diversity in Rosie’s role has meant that she’s been able to share her experiences authentically with audiences far and wide who’ve heard directly what life and reality is like for Rosie. This has been very supportive for Rosie.
Rosie’s Health Team colleagues aim to be creative, reviewing and adapting the support provided to enable Rosie to continue with her employed role, which is very important to her. Keeping this work routine helps Rosie to have a meaningful lifestyle and feel valued and part of her community.
Rosie’s dementia diagnosis
In 2022, following changes in her health, Rosie was diagnosed with dementia. Rosie now brings a truly unique and very personal experience of dementia to all of the work she does with our Health Team. In the last year this has included co-presenting on a Dementia Community Webinar and participating in a YouTube Live Caring View Show.
Rosie also spoke at the 2023 Dementia Congress alongside her Health Team colleagues Nicola Payne and Meg Wilding.
Nicola Payne, Best Practice Manager for Health and Families says:
“Working side by side with my colleague Rosie to enable her to have a voice on platforms that can help people hear directly what it can be like living with a diagnosis of dementia and a learning disability is so important to me. I am so proud of Rosie and her commitment that she has brought to our Health Team.”
Filming in conjunction with NHS England and Dementia UK2
Perhaps most significantly in recent months though, Rosie made this very moving film for NHS England in conjunction with Dementia UK
The film was created to augment the LeDeR (Learning Disability Mortality Review) dementia resources. For MacIntyre, this opportunity built on the mutually beneficial relationship we’ve had with Dementia UK over many years, including through having the UK’s first Learning Disability Admiral Nurse.
In Rosie’s words
Rosie’s key message, both from the NHS England film and in everything she does, is:
“It’s not what you can’t do, it’s what you can do.”
Rosie’s changing experience of dementia
We know that no two days with dementia are ever the same and progression is inevitable. Things are changing for Rosie but we remain resolutely committed to providing Rosie with the very best dementia support possible and hugely value her ongoing contribution to all of our Health Team work.
All being well, you can see Rosie speaking alongside Nicola Payne and Meg Wilding at the Alzheimer’s and Dementia Show at London’s ExCel on Saturday 15 June. Do join us if you can! Find out more here
We thank Rosie for all she continues to share with us and the wider world to help everyone understand the experience of living with a learning disability and dementia better.
