To commemorate World Alzheimer’s Day, News-Medical speaks to Dr. Meredith Gresham, coordinator of COGNISANCE: Co-Designing Dementia Diagnosis And Post Diagnostic Care, in regards to the project and post-dementia diagnosis take care of patients and their families. We also feature comments from the project’s international partners on their work throughout the project. 

Please are you able to introduce yourself, tell us about your scientific background, and what inspired your profession in dementia research?

As an Occupational Therapist with 30+ years of experience, I’m enthusiastic about assisting people in living well with dementia. Some people consider the “live well with dementia” idea corny at best and unrealistic at worst. Nevertheless, there are large and growing amounts of research to point psycho-social and lifestyle interventions that may just do that – aid you to live well and are available to terms with a diagnosis, in addition to live a full and meaningful life. The important thing, nonetheless, is getting a diagnosis in a timely fashion from a medical practitioner who will support you on the proper path with information and resources to plan for the long run and feel and be on top of things. That’s what attracted me to COGNISANCE and what we’re striving to do. But to attain this, things must change!

Are you able to tell us a bit about COGNISANCE? What are the goals and objectives of the project?

Co-designing dementia diagnosis and post-diagnostic care (COGNISANCE) was a project led to by pervasive and global issues with how a diagnosis of dementia is given without hope and the poor support received after diagnosis. In a worldwide survey undertaken for the 2021 World Alzheimer Report (Alzheimer’s Disease International), 55% of individuals said they got inadequate information at diagnosis, and 62% of healthcare practitioners believed that nothing could possibly be done following the giving of a diagnosis.

The Chief investigator is Professor Henry Brodaty AO, an old age psychiatrist researcher, policy advisor, and robust advocate for individuals with dementia and carers. At UNSW Sydney, he’s Scientia Professor and Montefiore Chair of Ageing and Mental Health and Co-Director of the Centre for Healthy Brain Ageing. He has published extensively and serves on multiple committees for the state and Australian governments and WHO.

COGNISANCE aimed to develop, test, implement and evaluate a worldwide website tailored for every country involved and social marketing campaigns to alter hearts, minds, and behaviors to enhance how a diagnosis is communicated and the support available following diagnosis.

To satisfy our goals, we used a five-step approach:

1. Through surveys and interviews, we explored current experiences, barriers, and facilitators to dementia diagnosis and post-diagnosis support from the perspectives of individuals with dementia, care partners, and health and social care professionals in each of our regions. 
2. Based on this formative research, we co-designed an internationally adaptable set of web-based resources and key messages to support improvement within the communication of diagnosis and post-diagnostic support.
3. Each country reviewed the context of dementia diagnosis and support, including policy, practice, and the character of existing supports to plan a social marketing campaign named Forward with DementiaTM to speak key messages, change help-seeking and help-giving behavior, challenge stigma, myths, and misconceptions about dementia.
4. We’re currently evaluating the project.  
5. Lastly, we are only completing a ‘Playbook’ as a guide to explain the method and help other countries to provide public resources and campaigns to remodel how a diagnosis of dementia is communicated, and the support offered after diagnosis.

Alzheimer’s Disease International has estimated that three-quarters of individuals with dementia haven’t received a diagnosis. What’s the present strategy of dementia diagnosis, and why is a diagnosis difficult to acquire?

There are various reasons, including health resourcing in numerous nations. Our project addresses, partly, the fear of dementia. Some research has indicated that dementia has outstripped cancer as essentially the most feared disease. Individuals with dementia, families, communities and even health professionals often feel nothing may be done.

While there’s no cure for many dementias, much may be done to treat and manage the symptoms and live a full and meaningful life after diagnosis. But, as I discussed,  things need to change. Health professionals need to speak a diagnosis of dementia with compassion and hope and supply patients with information and resources that may enable them to live well.

Individuals with dementia, families and friends need clear information and practical actions to live well today, plan for tomorrow, and challenge the stigma and misinformation that always accompanies a diagnosis.

This 12 months’s World Alzheimer’s Day theme is ‘Know Dementia, Know Alzheimer’s’ and focuses on post-diagnosis support. What’s the present state of post-diagnosis support, and the way can it’s improved, each for the patient and their family?

Our formative research for COGNISANCE indicated variability across our five participating countries regarding post-diagnostic support. Even with 4 out of 5 of our participating countries being developed nations (Australia, UK, Netherlands, Canada; Poland is our LMIC), as much as one-third of individuals with dementia (91 people) and carers (300) we surveyed were dissatisfied with the knowledge they received and lower than 1 / 4 of individuals with dementia and a few third of carers received a plan of care.

Yet there’s a plethora of data! COGNISANCE has codesigned an internet site (the international landing page) that provides a comprehensive guide to post-diagnostic support. The web site has three sections for individuals with dementia, carers, and health care professionals tailored to satisfy their specific needs.

Cognisance has given us the chance to collaborate internationally to satisfy the common goal of improving the experiences for people after a diagnosis of dementia. Being given a diagnosis of dementia may be overwhelming. People may not know the inquiries to ask or give you the option to get the knowledge they need at the proper time.

We now have worked closely with people living with dementia, carers, health care professionals, and organizations akin to the Alzheimer’s Society to co-produce a web based guide Forward with Dementia. People have told us that having the ability to have a one-stop shop for information and practical tools after a diagnosis is such a novel and priceless resource. “Did someone behind this have dementia? I believe so, it’s so subtle and straightforward to make use of, you wouldn’t even want to return of it”.

Within the UK, you’ll be able to personalize and save the knowledge relevant to you, and it’s a resource that may be shared with family, friends, and health care professionals and used as an motion planner to start out conversations. “…With this I can select my very own to-dos, so I’m in charge”.​

Helping people to access good support at the proper time is vital to living positively with dementia, and Forward with Dementia has been developed with the people who it’s for. We’re delighted that within the UK, now we have funding from the NIHR through their three schools dementia program to further develop the guide for home care staff and to curate information for social care needs.” – Jane Wilcock, Senior Research Fellow, University College London. 

Five sections follow the questions people have about dementia, starting with understanding the diagnosis, then coming to terms with dementia, managing changes, supporting wellbeing, and planning and decisions. Each section accommodates a broad range of concise articles with curated links to external web sites and tools for further information.

But greater than just information, Forward with Dementia provides key actions; it puts the knowledge into practice for you. For instance, the article on supporting someone to stop driving doesn’t just give details about driving; it gives you a balanced view of pros and cons to continuing driving, a link to a driving decision aid to assist guide your occupied with stopping (or continuing) to drive, a link to a video about the right way to discuss driving cessation and an article about transport alternatives and advice about informing transport authorities and insurance firms. A box at the tip of every article summarizes the actions to take.

Image Credit: LightField Studios/Shutterstock.com

For busy health professionals, there are only two sections. One on the right way to deliver the diagnosis compassionately and with hope, and secondly, the right way to deliver best practice and guideline-informed post-diagnostic support. 

Importantly, we co-designed some key tools. One example is the ‘Patient information resource’ for doctors. This directly responded to our finding that folks left the diagnostic appointment with nothing of their hands. Often shocked and distressed, there was nothing they felt they might turn to. This easy take-home information sheet is provided for download on the web site. It takes the doctor seconds to fill out but provides the important thing information of the diagnosis, what the management ought to be, when, and who will provide follow-up and the important thing telephone numbers and web sites for support. That is our Australian example. We’ve been providing free printed tear-off pads for diagnosticians during our campaign.

Through the COVID-19 pandemic, now we have seen healthcare change. For the higher, through the appearance of telemedicine, and for the more severe, as seen within the long waiting time for services. How has the COVID-19 pandemic impacted dementia diagnosis, and post-diagnosis support?

COVID-19 was an enormous disruption to diagnostic and other health services, particularly dementia support. The pandemic hit just as we were launching the COGNISANCE project. We needed to rapidly pivot from a conventional face-to-face approach to a web based project. Logging on meant we had the potential for a far greater reach, with the caveat that many older people aren’t as comfortable using online environments.

The post-diagnostic support inside Forward with Dementia was written with the isolation of pandemic lockdowns top of mind and provides actions and methods to return to terms with dementia, manage changes and reduce isolation that may work in a pandemic or not! For instance, links to Dementia Alliance International and other online support groups are given in addition to examples of commercially available online cognitive training sessions that folks can link into.

Dementia is a worldwide phenomenon. On this project, we had the chance to develop resources to support individuals with dementia and care partners following a dementia diagnosis with the intention that they could possibly be adapted and used globally. This was achieved by working collaboratively with distinguished dementia researchers, individuals living with dementia, family care partners, and health and social care providers from five different countries. The approach we used contributed to the event of resources which are wealthy and relevant to a broad range of people impacted by dementia. It has been a tremendously rewarding experience.”- Carrie McAiney, University of Waterloo and Schlegel-UW Research Institute for Aging, Canada. 

A crucial a part of Forward with Dementia, pandemic or not, is when, how and who to inform the diagnosis. We talk rather a lot about this and even provide a tool to assist people think through the right way to do that. There’s an emphasis on reassuring people who it’s OK to ask for help and support and dispelling myths surrounding dementia.

The COGNISANCE team and its collaborators are international. How essential is it to this project to be a collaborative and inclusive one?

There’s a saying in dementia advocacy, “nothing about us with us.” And not using a team of willing co-designers living with dementia, carers, and health professionals, the web site and campaign wouldn’t be what it’s. The web site must be real, accessible, inclusive, practical, accurate, and straightforward to make use of. You won’t get this in case you don’t use the people it is meant for in development. Particularly essential was the user testing by co-designers of the navigation and functionality of the web site.

Second, we live in a worldwide society. While dementia is a disease, it’s culturally defined. The inclusion of international partners was intentional to know higher how dementia is defined and understood, and the way health and social support systems respond in other countries so we may learn from one another.

Image Credit: Bencemor/Shutterstock.com

A striking example was to learn that the Polish term for dementia is otępienie – also meaning senility, stupidity, and slowness. Understanding this provides an understanding of the stigma accompanying the diagnosis and the reluctance to hunt diagnosis or help. Within the Netherlands, we learned the worth of dementia navigators – expert professionals that may guide people following diagnosis who will help reduce the sense of being lost or on one’s own in managing this disease.

What’s next for you and COGNISANCE?

We hope COGNISANCE and the Forward with Dementia website and campaign are the beginning of real, effective, collaborative worldwide change. We now have just accomplished writing the Forward with Dementia ‘Playbook’ – a step-by-step guide on the right way to effectively develop an internet site and resources to enhance the way in which a diagnosis of dementia is communicated and bolster post-diagnostic care, in addition to the right way to run a campaign to lift awareness and stimulate positive change in your region of the world. The Playbook might be available on the Forward with Dementia website. We hope others will take up the challenge, improve and grow this initiative.

Where can readers find more information?

About Meredith Gresham  

Dr. Meredith Gresham is the coordinator of the COGNISANCE project, a global project led by Scientia Profess Henry Brodaty AO from the Centre for Healthy Brain Ageing at UNSW Sydney, Australia.

She is an occupational therapist with over 35 years of clinical and research experience. Her practice has focused on dementia care in residential aged care, hospitals, community, rehabilitation, and palliative care settings. She has expertise within the design of the physical environment and the usage of assistive technology to enhance the function and independence of individuals living with dementia.

Her research interests span education and training with family carers of individuals living with dementia, reablement interventions for individuals with mild to moderate dementia, development of recent service models for older individuals with very severe and protracted behavioral and psychological symptoms of dementia, development of evaluation for signage for wayfinding for individuals with dementia and providing holistic interventions for the management of behavioral and psychological symptoms of dementia.

Of note is the power of Dr. Gresham to work collaboratively to implement research outputs, including conducting formative research through to the implementation of a Special Dementia Care Program (SDCP), a joint Aged Care -NSW Mental Health partnership program for the management and interim accommodation of individuals with very severe and protracted modified behavior related to dementia. The SDCP model is currently being rolled out by the Australian Government to the 31 Primary Health Networks across the nation.