Tracking the progression of your loved one's dementia helps caregivers understand how their loved one is doing and communicate this to medical professionals and formal caregivers. Meanwhile, researchers need data that can be compared across individuals, institutions and geographic areas. However, getting access to this data is difficult, expensive, delayed and even inaccurate.
For a researcher, getting data on dementia progression can mean one of three options: doing a retroactive scan of medical files; completing a research study; or partnering with a doctor. All of these options require ethics clearance, which forces researchers to be very specific about their target participants, and limits the extent to which researchers can adapt as they learn. If researchers are doing a study, they have to recruit participants--an exercise that is expensive, time-consuming, limited in sample size, and constrained by time. One researcher we spoke to said the process involves her going back to her ethics board to get approval to post an ad, and then paying for ad space in a newspaper. There's a better way.
What it does
Spindle is a mobile app that incentivizes caregivers to provide valuable data to researchers by helping them track their loved one's dementia progression. While there are many health tracking apps out there--including for pregnancy, pain, allergies, fitness, and dementia--these apps are overly complex and difficult to use. Our app is not only easier to use, but helps multiple caregivers track important pieces of context around a single patient, all in one place.
Dementia is an incredibly sad, destructive disease with no cure. Tracking progression of the disease is important, but helping caregivers and patients maintain hope and positivity is equally critical. Spindle is unique in that it allows caregivers to track successes alongside symptoms and events (including medications). Caregivers can mark milestones, symptom reduction, or even just a "good day".
A summary of this data can be easily exported as a report that can be printed and taken to the patient's doctor, or relevant doctors, personal care workers, and others can be invited to contribute to the patient's profile alongside their informal caregivers (family and friends).
Researchers can see how symptoms, successes and events relate for different demographics in real time, over time.
Researchers would access this data using a web app, through which they could download the full data set, or a demographic slice that interests them. Researchers could sort by age, sex, time since diagnosis, location, living situation, and type of support a patient is receiving. Researchers could also request the addition of symptoms related to burgeoning areas of research such as hearing loss, which would allow them to make progress in new areas faster. Given that patients are caregivers are inputting their demographic information, researchers can also push research study contact information to eligible patients and caregivers, reducing and simplifying recruitment for research studies.
Benefits for caregivers:
- Multiple caregivers (and even the person with dementia) can add symptoms, successes and events to create a holistic profile
- Simple and easy to use
- Easily produces reports to share with a doctor
- Ability to invite doctors and other formal caregivers to your digital care team
Benefits for researchers:
- Provides a large sample size because of large user base (hopefully)
- Tracks patients in context over time
- Produces longitudinal, standardized, real-time data
- Provides context by tracking successes, events, and symptoms so researchers can see what influences a person's dementia progression and wellbeing
- Ability to push research study information to relevant patients and caregivers
- Reduce the hurdle of ethics clearance by accessing anonymous data
- Ability to download a data set immediately
- Ability to suggest new symptoms based on new areas of research