Research Needs to Expand to Focus on Treatments that Caregivers Are Finding Effective
There’s a lot of conflicting information about what works and what doesn’t in relation to helping loved ones who have Alzheimer’s. Researchers and practitioners have different takes, probably because researchers are running scientific trials over long periods of time, while practitioners (including all types of caregivers) are seeking to find something that works now.
Recently, Time addressed this conflict in “Advances for Alzheimer’s, Outside the Lab,” written by Eben Harrell. The article reports on a choir in Britain which involves Alzheimer’s and dementia patients. When singing Amazing Grace, the choir members remember most of the words as their voices fill the hall. The choir is organized by Chreanne Montgomery-Smith, who works with the Newbury Branch of the British Alzheimer’s Society and is in charge of running support groups. She finds that the choir members are positively affected by the singing. “You can see how they become lucid when they sing. The research isn’t there to support it at the moment, but I’m confident these sessions will one day be shown to slow the progression of Alzheimer’s,” she said.
Even though she was confident that these singing sessions were of benefit, the British Alzheimer’s Society asked her to not use “treatment” as a description since the scientific data hadn’t at that point proven that singing offered any benefits. We’ve seem similar cautions from the research community in a variety of areas, such as gingko biloba.
Yet at times, research at times does catch up with what practitioners’ findings. For instance, a University of California study just released found that listening to certain tunes that are well-known by loved ones with Alzheimer’s may help them form a resistance to the disease. The study, entitled, “The Neural Architecture of Music-Evoked Autobiographical Memories” by Dr. Petr Janata, is being published in the journal Cerebral Cortex.
Although more studies are needed into this subject, at least researchers are starting to explore techniques that practitioners believe are working with loved ones. The Time article notes that often the researchers’ focus is on finding a cure, which has caused studies to be focused on psychopharmacology, immunology and gene therapy. While waiting for breakthrough studies in these areas to be announced to stop Alzheimer’s, caregivers are doing their own version of action research. They’re trying different techniques to see if they can help slow the loved one’s disease. And researchers increasingly are taking note.
For instance, a pilot program at Cambridge University’s Addenbrooke’s Hospital has focused on the use of a specific type of camera that hangs from the wearer’s neck and passively takes wide-angle photos every 30 seconds. These photos are then played back to the loved one who has memory loss. The results thus far have found that memory-impaired persons who use this particular type of camera (instead of a traditional camera) seem to have their recall enhanced by up to 80%.
As a caregiver, I appreciate these types of studies which potentially could help me deal with the loved one who has Alzheimer’s now. Yet there are some who question whether we’re spending this research time and money wisely. Susanne Sorensen, head of research for the Alzheimer’s Society U.K., was quoted in the Time article as saying, “There are so many things that you can’t overcome with Alzheimer’s – we can’t get too excited by these low-tech treatments. They can help patient care, but they will never deliver a solution.” I disagree with Dr. Sorensen’s view in this area. Although I do want a cure for Alzheimer’s (as do most people who may face developing Alzheimer’s later in their life), I also think we need to focus on how we can help those who are struggling with the disease here and now, as well as the caregivers who work so hard to provide a safe, stimulating environment. Whether it’s music therapy, camera therapy, or gingko biloba, I encourage researchers to take note and create studies that help us find new ways to help our loved ones who suffer from dementia.