I wanted to share with you an opportunity for those with moderate to severe Alzheimer’s to participate in a clinical trial in Medford. It is believed that the drug being studied may actually restore synaptic structures and functions damaged by Alzheimer’s, resulting in improved cognition and memory, and therefore overall quality of life, for Alzheimer’s patients.
I have attached some information about the study. If you are interested in learning more, you may reach out to Sunstone Medical Research directly, or email me with your name, email, and phone number and I will happily pass it along to them. Please feel free to share this information with everyone you know.
Sunstone Medical Research: Sunstone Research Website; Sunstone Research Email; (541) 973-2080
This is the first time clinical trials for an Alzheimer’s drug has been available in our area and we would love the opportunity to do this again in the future!
Gray Matters Consulting
A few weeks ago (2/9/16), I wrote about the power of music and how it activates all parts of the brain, unlike any other activity. I am thrilled to report that the Betty Irene Moore School of Nursing at UC Davis will collaborate with the California Association of Health Facilities (CAHF) to conduct research to improve dementia care.
The three-year project is called “CAHF Improving Dementia Care through Music & Memory” and will use iPods with nursing home residents as a way of re-introducing them to their favorite, personalized music to improve their daily lives. As seen in the documentary Alive Inside: A Story of Music and Memory, creating personalized playlists for nursing home residents reawakened them like nothing else had prior.
The focus of the study is to determine if familiar tunes can reduce the need for medication and improve the quality of life for the residents. While many short-term studies suggest positive outcomes, this 36-month study will help determine if the practice can be sustained and works longer term and reduce the use of antipsychotic medication for people with dementia.
The program received a $1.4 million grant to distribute Music & Memory iPods and personalized playlists to 4,500 residents across 300 nursing homes in California. Funding for the grant comes from civil monetary penalties and fines collected in California for nursing home violations.
There are three parts to the study:
- Evaluation by the UCD team to determine if the program works and how nursing homes implement it.
- Independent testing by researchers of two to three Quality Assurance Performance Improvement tools to support implementation of the program. This is essentially a roadmap required by nursing homes to improve the quality of life, care, and services.
- Study, documentation, and reporting on organizational factors present in the success or failure of the adoption and sustainment of Music & Memory in the participating facilities.
According to Debra Bakerjian, one of the UCD researchers, “California is a microcosm of the rest of the nation in terms of diversity, its population of older adults and the number of nursing homes that operate throughout the state,” making it an ideal place to conduct the study. Music & Memory has programs to help set up their system in both private homes and in assisted living facilities. Of course, you may also contact me – I would be honored to help you in any way I can through your journey.
Gray Matters Consulting
For more information on the study, and to learn more about Music & Memory:
UCD School of Nursing Study
Music & Memory
People suffering from dementia are losing many aspects of brain function that once came easily to them. They suffer from memory issues; they lose ability to process and convey their thoughts and feelings; they struggle with normal, everyday tasks. However, with all this loss, dementia patients can be very good at masking their symptoms from others, including their doctors. Even when cognitive abilities are affected by disease, dementia does not lower a person’s IQ, leaving them quite effective in convincing a doctor that nothing is wrong.
There are a few things that can be done to help ensure the doctor is getting the proper information. First, try to make an appointment with a geriatrician, a doctor specializing in aging. Because of their field, a geriatrician is less likely to be misled by masking. Writing a letter to the physician prior to the appointment is also not a bad idea. Be sure to list specific incidences that are of concern to you, including the frequency of the event and even the actual dates, if you have them. The more specific information the doctor has, the better he or she will be in asking the right questions and not being side-tracked by the patient’s avoidance techniques.
During the appointment, don’t be afraid to chime in and answer the physician’s questions when you feel your loved one is not answering accurately. For instance, if the doctor asks “Can you use the phone?” and your loved one responds, “Yes!”, make sure the doctor knows that this means they can only speak to whomever is calling, but becomes completely confused if they need to pick up the phone and dial a number.
While this may seem trivial, the information is extremely important to a physician whose goal is to understand where your loved one truly is on a cognitive level. If doctors are not provided with accurate information, they can wrongly conclude that their patient does not need services or assistance from the various agencies. They may also miss an opportunity to order further testing which could result in diagnosis. The few Alzheimer’s drugs that exist work best earliest in the progression of the disease and the earlier they are started the more successful they are.
Your loved one may be unhappy with you for qualifying their answers. If the dementia is more severe, they will forget soon. If not, remember that, even if they do not understand, you are acting in their best interests to get them the best assistance available. If you need someone to talk to about resources, or more specific help, please feel free to contact me to set up a complimentary consultation so that we can discuss how I may be of service.
Gray Matters Consulting
Other useful sites:
Elders Hiding Dementia Symptoms from Their Doctor
Dementia Patients Need an Advocate