Today’s guest blog post comes from Chris Kelly, MEd, MA, Director of Health Education at HealthEd. Prior to HealthEd, Chris was director of education for the Alzheimer’s Association and also served as special care manager for Marriott Brighton Gardens Alzheimer’s Special Care Center, counselor and activities therapist with the Institute of Pennsylvania Hospital, group home coordinator with Bancroft Neurohealth, and child life counselor with the Philadelphia Child Guidance Clinic. At HealthEd, Chris is responsible for leading development of a wide variety of patient education programs.
By Chris Kelly
After having spent most of my career working as an educator and a professional caregiver in the Alzheimers field, I was excited to participate recently in a social media insights-mining project to better understand the treatment journey for people with Alzheimers disease and their caregivers. Our team at HealthEd was hoping to uncover actionable barriers, drivers, and educational needs related to Alzheimers treatment decisions and self-management.
A unique barrier: differentiating symptoms from side effects
“She has been on Brand X for five years but started with aggression, so we stopped it.
“They did add another Alzheimers medicine, but she was not well on it, so I took her off after one day.
“He was put on Brand Y last year and improved but now he started complaining he was tired and didnt sleep last night.
“They put her on Brand X, and she is having delusions and trouble talking.
One intriguing outcome of this social media insights-mining project came from our analysis of the various reasons why Alzheimers medicines were stopped. The quotes above seem to uncover the similarities between Alzheimers symptoms and treatment side effects. How are patients and caregivers supposed to differentiate between the two? I wonder how many times a patient stops treatment because they mistake an Alzheimers symptom for a side effect of their medication. This is a significant finding, as it uncovers a gap in current patient education programs and materials.
An innovative solution
ABOVE: HealthEd organized the collected data into a patient journey map
After a review of current Alzheimers patient education materials, it seems that content about symptoms and content about side effects are typically presented separately. The real opportunity here is bringing symptom and side effect content together. Doing so will validate the challenge of differentiating between the two and promote effective dialogue between patients, caregivers, and the healthcare team about what to expect and what to do when symptoms or side effects occur. This would increase awareness and understanding of this barrier for patients and caregivers and help them work with their healthcare team to make informed treatment decisions.
A blueprint for positive outcomes
“Its always a challenge, but one that I accept. With the help of my wife, family, and friends, I will press on. The Alzheimers Association has been a tremendous help to me. There is my medicine¢‚Ç¨¬¶my doctor. I have a support system that I deeply appreciate. There is life after diagnosis, and I plan to do my best to live it.
I will close with the amazing quote above. It is poignant that this quote comes from a man living with a progressive, devastating disease, yet his words capture both hope and courage. Its almost as if hes provided a blueprint for living and coping with Alzheimers disease. I wonder if his positive outlook and determination are born from his understanding of his condition and prognosis, having the support of knowledgeable family and friends, forging a strong relationship with his healthcare team, and being involved with an advocacy group such as the Alzheimers Association.
This project has helped me further appreciate the raw, unfiltered insights that surface when patients and caregivers connect in an informal, unstructured social media environment. These unique insights can drive and inform:
¢‚Ç¨¬¢ Innovative educational design
¢‚Ç¨¬¢ Appropriate tone and manner
¢‚Ç¨¬¢ A grounded, integrated strategic plan
¢‚Ç¨¬¢ Successful outcomes for patients, caregivers, and the brand