Developing online remote screening for memory problems

This blog was written by Victoria Gabb, a researcher from the Research into Memory and the Brain (ReMemBr) group at the Bristol Brain Centre in Southmead Hospital. In it, she reflects on working with a patient and public involvement (PPI) group to develop an online screening tool for memory problems.

Diagnosing memory changes

As we age, we may experience changes in our memory. Some changes are normal. Patients who are worried about any changes should see their doctor, who might screen for dementia or mild cognitive impairment (MCI).

Early diagnosis of memory problems means people can receive timely and appropriate healthcare as well as having more opportunities to get involved in research.

Online memory tests taken at home could help diagnose and triage patients more quickly. They could also be used to screen people interested in research before they come to a clinic.

Introducing Re-MEM

Alongside our PPI lead Julie Clayton, I’ve been working with a PPI group to develop Re-MEM. Re-MEM is a prototype for a self-administered memory test. It can be completed using a browser on any smartphone, tablet, or PC.

In Re-MEM, you are asked to categorise a list of 20 words as “alive” or “not alive”. At the end of the list, you recall all words you remember before seeing the list again.
After a delay (e.g., the next day), you again recall all words you can remember. You are then shown a longer list of words which includes new words and asked to say which words you think were in the first list.

Re-MEM lets us assess many measures of verbal memory including recall and recognition memory. Verbal memory is sensitive to the changes we see in early Alzheimer’s disease and Parkinson’s disease.

PPI at the heart of Re-MEM

To help us build and improve our initial Re-MEM prototype, we worked with PPI contributors with lived experience of memory problems to understand what mattered to them. This is because completing a memory test at home could seem strange or trigger anxiety, if people are worried about their memory. We also wanted the test to be easy to understand and complete from home.

Our PPI group included people with MCI and people who had cared for others with memory problems.

What did we learn?

Overall, our contributors found Re-MEM to be a short, simple task. Instructions were clear and the test was considered easy to complete at home.
Contributors with experience in online memory research enjoyed the novelty of a verbal memory task compared to other memory tasks (e.g., remembering numbers or where objects were located).

Benefits of remote memory testing

Most people felt that being at home would be more comfortable and less stressful, improving concentration and better reflecting memory. Some contributors felt completing the task within a given time window (rather than at a specific appointment time) was convenient. They saw avoiding travel and the stress of attending a clinic appointment as main benefits.

Considering individual differences and needs

Contributors highlighted that it was important to be flexible and provide reasonable adjustments where possible.

For example, our PPI contributors were confident using the internet to complete Re-MEM. However, they knew others who may not be able to complete Re-MEM even with support. Reasons for this included access to or use of the internet or more advanced memory problems.

We will reflect on who the test is appropriate for, how it could be adapted to different needs, and what we could offer as an alternative. We came up with many ways to improve Re-MEM including reducing reading age, translating it into more languages, and ensuring the website supports assistive technologies.

We also need to think about what might impact results and whether we record this information (e.g., asking about education, stress/anxiety, or distractions during the task).

The takeaway

Remote memory tests offer a scalable way to help with triaging, diagnosis, and research. They also reduce the burden on clinical services and patients. PPI offers invaluable insights into what matters when developing new tools.

We are seeking collaborators and/or funding to help us develop Re-MEM. Our next steps are testing Re-MEM with patients to find what metrics correlate with important health outcomes.
I would like to thank our development team, PPI group and Julie Clayton for their vital roles in Re-MEM.