By Trial & Error - A Personal Dementia Clinical Trial Journey

by Women's Brain Health Initiative:It was when she got lost on the way to the only cemetery in town that Cynthia Huling Hummel realized she had to leave the life that she knew and loved. She was a minister who was supposed to be leading a graveside ceremony, but she forgot how to get there.“I had to give up my ministry because I couldn’t remember my people and their stories.”Cynthia had noticed her own increasing forgetfulness. Her mother was living with Alzheimer’s and her mother’s brother had died of the disease. But until the day that she missed the funeral she believed that she was coping. Tests ensued and in the spring of 2011 came a hard diagnosis: mild cognitive impairment (MCI). Her beloved vocation as a minister was over at age 57. A woman of deep, abiding, and sustaining faith, Cynthia was devastated. But out of her heartbreak she found a new path, a new way to contribute to society.“It’s easy to focus on all the losses and the things you can no longer do as well as you once did, but I’m trying to focus on what I can do to make a difference,” she said in a telephone conversation with Mind Over Matter^® from her home in Elmira, a small city in southern New York State.She contacted the American Alzheimer’s Association and learned about its program called “Trial Match,” which connects researchers with individuals wishing to volunteer for clinical studies. Cynthia was led to the University of Rochester and Dr. Anton Porsteinsson, a professor of psychiatry and neurology. He is a contributor to a massive, multi-year study called the Alzheimer’s Disease Neuroimaging Initiative (ADNI), a public-private project involving researchers at 63 sites across the U.S. and Canada.ADNI is a longitudinal study, which means that it is tracking the progress of the volunteer participants over several years and observing changes in their brains and behaviour. ADNI provides invaluable baseline data that is freely made available to researchers across the globe – data that has formed the basis for more than 1,000 scientific papers.Cynthia made the two-hour drive to Rochester to meet Dr. Porsteinsson and to undergo several hours of examination. She was briefed on the study, asked to complete a consent form, and given the opportunity to consider whether she still wanted to participate. There were memory tests, an electrocardiogram, and blood work. The researchers needed to ensure that there were no other underlying medical conditions, that she did in fact suffer from cognitive problems, and that she fit into one of the specified test groups.That was in 2011. Now Cynthia stands out as one of Dr. Porsteinsson’s most inspiring volunteers.“She kind of had to reinvent herself and she sure did,” he said in an interview from his campus office.“She’s been incredible, not only with her participation, but also with her advocacy. She’s been the epitome of resilience and adaptability.”Once a year, Cynthia drives to Rochester and visits the clinic where she has volunteered for the full range of tests, including a spinal tap. “I’m in it totally, everything they want I do. I love the doctors and nurses. They know about my life and family. I feel their care, their love.”She became fascinated by the science of what is occurring in her brain. Some participants do not wish to know all of the details of what the researchers are observing. Not Cynthia. She wanted to know everything, even when a 2016 positron emission tomography (PET) scan revealed that her diagnosis had changed from MCI to early onset Alzheimer’s disease.Through her journey, Cynthia found a new calling as an advocate for Alzheimer’s research and for those living with this devastating disease. She speaks at conferences, churches, and community organizations. Despite her prognosis, her voice is effervescent, her stories punctuated with laughter. A minister no longer, she still comes across as a joyous preacher.“Just being able to guide other people, I think that’s probably the biggest blessing, to walk with other people who’ve had a diagnosis and to help them on their journey. I always tell people this is my ministry. Alzheimer’s is my ministry. It’s not one I really wanted, but it’s the one I got.”While she still lives independently, Cynthia has had to develop mechanisms to help her cope with the disease. She relies heavily on her telephone, constantly setting reminders of appointments. She is surrounded by a circle of close friends who form her support network. She has asked them to closely observe changes in her behaviour and to be frank with counsel as the disease takes its inevitable course. She knows that the day will come when one of them will have to take away her car keys and when she will have to move from her home into a care facility. She is constantly in touch with her son and daughter, who both live a few hours’ drive away.“It’s great she found this study. It’s an outlet for her,” said her daughter Emily Kawasaki in an interview from her home in Brooklyn. “I love it because her whole life, whatever she’s done, she’s looked for something with a mission. I’m really happy she’s found this new passion.”It is also a comfort to Emily that her mother has strong support nearby. Caregiving can be a debilitating burden for the adult children of individuals with dementia. “She’s found this right combination of self care and healthy living that works for her,” she said. “Leaving the ministry was very unfortunate because that was her life, but in some ways her unintentional early retirement had this weird silver lining.”Finding willing participants for clinical studies is an endless and crucial challenge for researchers. Dr. Porsteinsson advertises for new participants across various media platforms and regularly conducts outreach sessions at community organizations. The ADNI project offers no direct benefit to volunteers, other than extensive information about their health. It is an observational study, as opposed to one that is testing a cure. But participants are motivated and committed. Very few drop out.“They want to make a difference, to contribute to the field of knowledge,” he said. “They find a sense of pride of purpose, a sense of value in what they do. And that does a lot for the human psyche.”The researchers vocalize their admiration and gratitude for the contribution of volunteers. “The research cannot be done without our research participants,” said Dr. Jennifer Campos, senior scientist at the Toronto Rehabilitation Institute. “You can have the fanciest infrastructure and funding, but if you don’t have the individuals, you won’t go anywhere.”She and her research team seek out volunteers through extensive advertising via the internet and printed posters at hospitals, libraries, and community centres. The Alzheimer’s Society of Canada’s website has a helpful platform that allows researchers to post information about their studies and connect with volunteers.Dr. Campos says that she and her colleagues do all that they can to make the research environment as welcoming as possible for participants, to ensure that they have a good experience, and to know that their contribution is valued. Some of her best volunteers are retired professionals, a few are in their 90s and were engineers, scientists, and teachers – people who understand the importance of research and who can offer learned perspectives.“Research studies often don’t pay that much. It requires people to be intrinsically motivated. It’s a very unselfish endeavour,” said Dr. Campos. But she laments that finding participants remains a great challenge for researchers. “Despite the fact we’re using all of these multi-pronged approaches, we have a poor success rate with recruitment.”Dr. Campos noted that the national research network AGE-WELL is particularly effective in attracting volunteers for research projects. Its mandate is to promote the development and implementation of new technologies to assist individuals as they age.AGE-WELL Scientific Director Alex Mihailidis told Mind Over Matter^® that the network engages with older adults and caregivers in many ways, not only through research projects. They are invited to AGE-WELL’s regular pitch competitions, where start-up companies show off their innovations. There are also less formal events, like pub nights, where older adults can mingle with young researchers. “A lot of it is driven by the students, they’re the ones who want to establish these relationships,” said Mihailidis.AGE-WELL believes that it is essential to have meaningful participation and input from the people who will be using technological innovations. The network has an advisory committee comprised of older adults and caregivers. A person with dementia sits on AGE-WELL’s Research Management Committee, which advises the board on all matters pertaining to the network.“That’s one thing we’ve been pushing, having end users involved from the beginning, getting their buy-in as to what we’re achieving, not just with the end product, but also with the research,” said Mihailidis.While all research volunteers deserve the gratitude of the research community, few are such a force of nature as Cynthia Huling Hummel. On the day of her Mind Over Matter^® interview, she had just returned from the Dementia Action Alliance Conference in Atlanta, where individuals with dementia gathered to share their insights and experiences.“It was wonderful to be there and to see all the things that folks are doing in their communities to live a life of service.” Although relentlessly positive on the telephone, she admitted to moments of sadness.She is pained by the knowledge that one day she may not recognize her own children or grandchildren, just as her mother eventually did not recognize her. “But the heart remembers. Even if we might not remember their names, love never dies.”Cynthia has a care plan in place, her affairs are in order, and after her passing she will make one final contribution to research. “I’m going to donate my brain so that I can keep fighting this disease after my death. It makes me happy that I can continue. It’s empowering.”Source: MIND OVER MATTER V9