As new treatments become available, researchers should include the caregiver’s perspective in tests of those therapies because it is often the caregiver who administers the treatment and ensures compliance with medications. A new PCORI guest blog features the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network also known as the Alzheimer’s Patient Powered Research Network (PPRN) and the vital role of caregivers in Alzheimer’s research.
As noted in the blog, when partnering with researchers, caregivers can shed light on issues that would improve their, and the care recipients’, quality of life, taking into account what may not be quantified in research. While researchers tend to focus on the patients’ cognitive processes, such as counting and puzzle solving, caregivers are more interested in improving the care recipients’ functioning, such as their ability communicate effectively or participate in family and social gatherings.
The primary aim of the Alzheimer’s PPRN is to connect patients, caregivers, and researchers focused on developing, conducting, and disseminating patient-centered dementia research. Consider joining and learn how the network engages patients and caregivers in a public webinar on June 28th.