Alzheimer’s disease from researcher to caregiver: a personal journey and call to action

Abstract

The devastating impact of Alzheimer’s disease (AD) spares no one. Given the economic and societal consequences, research and development for AD is presently witnessing a ‘call to action,’ yet the unmet needs of patients and caregivers are enormous. Moreover, despite the scientific advances and growing interest in public-private partnerships (PPPs), there are insufficient funds to support current and future PPP initiatives that aim to benefit all stakeholders. This article highlights a journey based on my own professional experiences as a neuroscientist, drug developer, and family member of a loved one suffering from AD. From my perspective, we must share our expertise as scientists and caregivers, our clinical trial data, our drug development tools, and our discoveries – just as we all share the burdens of this dehumanizing disease.

Keywords::

• amyloid hypothesis
• biomarkers
• CAMD
• public private partnerships
• regulatory science

Acknowledgements

I would like to thank Dr. Lynn Hudson, executive director of the Multiple Sclerosis Outcomes Assessment Consortium and chief scientific officer at C-Path, for review of this manuscript. I dedicate this review to my family and to those heroic caregivers who, with limited salaries, dedicate their days and nights to caring for the needs of my mother and all those like her suffering from AD.

Financial & competing interests disclosure

The author has no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending or royalties.

No writing assistance was utilized in the production of this manuscript.

Key issues

• Alzheimer’s disease (AD) economic, emotional and societal burden is unsustainable.

• Scientific discoveries have not advanced at a pace to parallel the growing unmet needs of families and patients suffering from AD.

• There is an increased need for precompetitive collaboration and alignment across them.

• There is a significant requirement for funding of public–private partnerships (existing and new ones).

• It is absolutely essential to learn from the past by data sharing, consensus science and positively influencing the regulatory landscape.

• There is a critical need to engage patients, family members and advocacy organizations.