Newsletter #2
Co-designing Dementia Diagnosis & Post-diagnostic Care (COGNISANCE)
Greetings from the Australian COGNISANCE Research Team. We are excited to bring you this update from the COGNISANCE project.
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Breaking News...
The Forward with Dementia website is now live and the campaign launches next week! |
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Thank You!
We are very grateful to everyone who has contributed to this project so far. It can be difficult to understand what difference submitting a survey, attending an interview or participating on a committee makes, but we assure you it makes the world of difference! Your survey responses, stories and experiences have directly informed our new website and campaign which in turn will improve the way a diagnosis of dementia is communicated and help people with dementia and carers in the 12-months after diagnosis.
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Research Results
The first phase of Cognisance research was to build a detailed picture of the experience of diagnosis and the nature of support received in the 12-months following diagnosis in Australia. Survey participants included 100 health professionals, 59 carers and 23 people with dementia. Individual or small group interviews were held with 19 health care professionals, 17 carers and 9 people with dementia.
Overall, results confirm previous reports in the international literature. Carers and people with dementia, described the experience of communication of diagnosis as variable, from ‘as good as could be expected’, to ‘he (doctor) couldn’t wait to get us out the door’.
Diagnosis produced ‘a tidal wave of emotion’ with reactions ranging from relief to numbness, horror, shock, fear and anger. People with dementia and care partners were unanimous that they needed to leave the diagnostic appointment with written information, but most felt ‘in shock’ and wanted a follow-up appointment to answer questions and receive information about what to do next.
Interviewees wanted a plan to take action
One carer said: “We walked out of that office thinking… What the hell happens now?”
Over half (53%) of people with dementia and around a third (38%) reported they were not given enough information about the diagnosis. Seventy percent of carers and 68% of people with dementia did not receive a plan of support following the diagnosis.
During interviews, people with dementia described feeling at a loss of what to do next. People did manage, but it took time to figure things out for themselves. COVID-19 and lockdowns made the situation of seeking support harder for many people.
Health professionals, particularly medical practitioners who give the diagnosis, described finding it challenging and difficult to offer a sense of hope. They identified a number of barriers, including lack of a support pathway after diagnosis.
One medical specialist said “…it’s just us scrabbling around trying to put band aids on, you know, what we can cobble together service-wise trying to support these people.”
Some medical practitioners told us there was no system that allowed them to follow up with their patients after diagnosis to discuss plans and plan for the future. Overall, a support plan with appropriate information, services and psychosocial support was seen as critically important to improve quality of life after diagnosis.
Campaign development
Similar results were found across the five countries participating in this project. This galvanised the research teams to work with a large number of people with dementia, family supporters, health and social care professionals from many walks of life to form ‘co-design groups’. These groups workshopped the name and ‘look’ for a campaign and website to spearhead positive change in the way a diagnosis is communicated as well as to alert and inspire people with the growing evidence around therapies, strategies, and actions to address the effects of dementia after diagnosis. The name “Forward with Dementia” was chosen to convey a dementia diagnosis is not the end, but a beginning. You can move forward and live positively with dementia.
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Forward with Dementia Campaign
Forward with Dementia is about challenging negative stereotypes around dementia and providing practical and positive support for people with dementia and their carers in the 12 months following diagnosis.
For medical practitioners, it is about changing the diagnostic conversation and care planning, including follow-up after diagnosis to ensure support, rehabilitative treatments and strategies to live positively with dementia.
Due to COVID, the campaign is primarily on-line. Messages of positive change will be delivered through a series of online talks or ‘webinars’ backed up by social media posts on Facebook, Twitter and a YouTube Channel.
This newsletter will change branding to become the monthly “Forward with Dementia” newsletter. You can encourage others to subscribe via the website. You can also follow us on Twitter and Facebook.
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Forward with Dementia Website
The Forward with Dementia website is now live!
The Website provides a ‘home’ for articles, tools resources, stories and news items. There is a calendar of events detailing online talks (clicking on the event takes you to the registration link). On the home page there are three portals providing important information and resources based on evidence and experience:
- for people with dementia
- for carers and
- for health professionals.
For people with dementia and carers there are five key sections design to provide effective guidance of what to do and where to go in the 12 months after diagnosis. These are:
- Understanding the diagnosis – making sense of what you are going through and what to expect
- Coming to terms with the diagnosis – to help you manage your feelings in order that you can move forward to adapt to life with dementia.
- Managing change – explores common changes that occur and the interventions and strategies that can help you manage these to get on with living life.
- Supporting well-being – provides the best evidence to keep you both happy, healthy and get the best out of your day.
- Planning for the future – outlines the ‘life admin’ tasks you need to attend to for peace of mind.
We are grateful to all the people who generously shared their stories of the challenges they faced and how they have managed.
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Forward with Dementia Webinars
As part of the Forward with Dementia campaign we are holding a series of webinars or online talks:
- The first webinar will be on 13th October 2021. Chaired by Prof Lee-Fay Low, our lead COGNISANCE investigator, Professor Henry Brodaty will discuss “Rethinking the Dementia Diagnosis Conversation”. It is targeted toward diagnosticians, but everyone is welcome.
- The second webinar will be on 11th November 2021. Chaired by A/Prof Lyn Phillipson, Professor Lee-Fay Low will discuss "Rethinking Support After Dementia Diagnosis". It is also targeted toward health care practitioners, but everyone is welcome.
- The first webinar for people with dementia and supporters will be on Wednesday 14th November from 11am – 12 noon and is entitled “A Dementia Diagnosis is the Beginning, Not the End”. The link to register will be advertised via the Forward with Dementia website soon.
All our online talks will cover topics that interviewees and co-designers told up were important. Future talks will explore reablement, how to talk with your GP, driving after a diagnosis and supporting people with dementia in decision-making.
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The Research Team
As the project has grown, out research team has too. We welcomed Dr Danika Hall who has been instrumental in nursing the website to fruition. Drs Amy Tan and Patricia Knight are assisting with myriad tasks in getting project activities off the ground. Our new Honours student, Jacky Zheng, conducted a series of user tests with some wonderful volunteers, and this greatly helped us to improve accessibility and functionality of the website.
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Jacky Zheng's honours research involves user testing of the Forward with Dementia website. User testing is an important step in ensuring a website is accessible for people likely to use it. Volunteers living with dementia and people who provide support have worked through the website during an online interview, commenting on aspects including the design, colours, photographs, and ease of navigation to find information of interest. We know that dementia may affect visual perception and that some older people may not be as familiar with navigating websites as younger generations, so this feedback allows the development team to make changes that will ensure the website is as user-friendly as possible.
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Please keep helping us
Please continue your involvement with this project. There are a number of ways you can help make a better future for people with dementia and carers.
Encourage others to visit the website and sign up for the project newsletters and register for online talks. Share the website with family, friends and colleagues by emailing the URL or printing or emailing articles of interest. You can also follow Forward with Dementia via social media – see the icons at the bottom of this page.
If you are presenting at professional meetings, please contact us and we can arrange to send you flyers
Medical practitioners can contact us for copies of resources like the Patient Information Resource or posters for your waiting room.
Importantly, we need to know if this project is changing hearts and minds. As the project progresses, we will ask for more feedback, including participating in surveys and interviews.
Together, we can move forward with dementia. |
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The Forward with Dementia program was funded by the NHMRC and the European Union (EU) Joint Programme – Neurodegenerative Disease Research (JPND), a global research initiative aimed at tackling the challenge of neurodegenerative diseases.
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