Awardee: Dr Meredith Dell Gresham
Title of project: Living with uncertainty: What information do people with mild cognitive impairment and families need and want after diagnosis?
Year of completion: 2024
Dr Gresham is an Occupational Therapist with 35+ years clinical and research experience focusing on support of people with dementia and carers. She has expertise in re-ablement, the design of the physical environment and use of assistive technology to improve function and independence of older people, and developed a model of residential care for people with very severe behaviours in dementia, now implemented nationally. She currently works at UNSW Sydney, coordinating the international COGNISANCE project, that aims for global improvement in the communication of dementia diagnosis and post diagnostic support.
This project aimed to explore informational wants and needs about Mild Cognitive Impairment (MCI) from the perspective of people with MCI, their family supporters and health care professionals, including determining appropriate and accessible formats for delivery of information.
A key theme for medical practitioners interviewed was “A dose of hope”. While medical practitioners were frank about the risk of progression to dementia, especially where MCI was considered incipient dementia, all tried to frame the diagnosis in positive terms, as an opportunity to practice lifestyle risk-reduction strategies. Other key information provided was management of co-morbidities. There was more variation in provision of information about planning for the future. Ongoing monitoring was usually considered beyond the scope of the GP and all offered follow-up. Two had self-prepared patient handouts, and two had heard of, but not referred to a new Dementia Australia MCI program. In general, referral to support services was not made, with the rationale being patients with MCI do not have functional impairment, a diagnostic criterion for this condition.
For people with MCI (6) and supporters (5) a key theme of “Prepare for the worst, hope for the best” emerged. Understanding of MCI was poor and was usually conflated with dementia, often based on previous personal experiences. Despite this, most hoped that life would stay the same or get better. None had any clear recollection of verbal or written information given at time of diagnosis. Most knew of general risk reduction strategies (diet, exercise, cognitive activity) but specificity of dose, intensity or frequency was lacking. Interviewees supported an MCI specific paper- and web-based resource that not only clearly describe MCI but provides practical ways to participate in effective dementia risk reduction activities, lists specific physical health and emotional care needs and associated supports, and provides practical tips about overcoming barriers for support.
A meeting was held to present initial results to Dementia Australia, with further collaboration to be sought in future.
Dr Gresham thanked the AAG Research Trust for the opportunity to conduct the project, stating, "This formative work is timely as interest in MCI and dementia prevention increasing. This work highlights that people with MCI and supporters want and need information and support but still exist in a diagnostic ‘no man's land’ of uncertainty. While medical practitioners are upbeat about mediating the risk of conversion to dementia, there remains very little to guide people about what to do, when and how much."