LEXINGTON, Ky. (July 21, 2022) 鈥 In her work with the University of Kentucky Sanders-Brown Center on Aging, UK College of Social Work Associate Professor Allison Gibson, PhD, has noticed an array of responses when people receive a diagnosis of mild cognitive impairment (MCI). The condition, which falls beyond 鈥渘ormal aging鈥 and often leads to the development of dementia and Alzheimer鈥檚 disease, causes noticeable changes in memory and thinking but doesn鈥檛 stop someone from carrying out most daily activities.
鈥淎s a country we鈥檝e gotten very familiar with Alzheimer鈥檚 disease. People know what it is 鈥 we鈥檝e done a good job with public health messaging, and it鈥檚 well-represented in TV and movies,鈥 Gibson said. 鈥淏ut people don鈥檛 really know what it means to get a diagnosis of mild cognitive impairment.鈥
Low public awareness persists despite the fact that 12-18% of people over the age of 60 are living with MCI, and each year 10-15% of them will develop dementia, according to the Alzheimer鈥檚 Association; within five years, 30% of people with MCI due to Alzheimer鈥檚 will develop dementia.
鈥淭he diagnosis can be really challenging. Some folks, especially women, will be really proactive and ask what they can do to try to prevent disease progression, or start making plans for the future," Gibson said. "Other folks get an MCI diagnosis and they disappear 鈥 they stop coming for appointments, stop returning our calls. Sometimes we never see them again. Sometimes we see them in six or seven years when it鈥檚 full-blown Alzheimer鈥檚.鈥
She also observed a dearth of informational and supportive services to help people navigate life with MCI. So with the collaborative pilot grant from the UK Center for Clinical and Translational Science and Sanders-Brown Center on Aging, Gibson recently ran a clinical trial designed to fill those gaps and develop interventions for this population.
鈥淚n our study we offered various interventions so we could see what people liked or didn鈥檛 like, what they were receptive to, and if we got them engaged in something during the study, if they would stay engaged after the study ended. Platform-based trials are common in pharmacological studies, so we took that concept and translated it for our study to try to address biopsychosocial needs of folks with MCI,鈥 she said.
Her study used a group-based model that included individuals with MCI plus a family member or friend as a study partner. Including a study partner helped ensure the research team received accurate information and can help prepare the study partner for a potential caregiving role in the future, should their loved one鈥檚 condition progress to Alzheimer鈥檚 disease or related dementias.
Gibson led four study groups over the course of 2020 and 2021, offering sessions on a variety of topics, like how to plan for the future (including housing needs), teach-backs on how to make the most of medical appointments, and memory strategy workshops to help people feel more prepared to run errands or go to an event. Participants also received some 鈥渉omework鈥 assignments, such as completing an advanced directive packet.
鈥淎ll of the participants did that one, and they came back with tons of questions about planning for their future,鈥 Gibson said.
She also had a pharmacist come in to discuss the importance of medication management for MCI and do individual medication reviews with each participant.
鈥淭he pharmacist was able to offer suggestions and information, like 鈥楬ey, did you know your cardiovascular medication is interfering with your memory medicine? Or that over-the-counter medicines can actually cancel out a lot of memory medicine? I was surprised at how receptive the participants were. It shows they鈥檙e hungry for information and a lot of times people just don鈥檛 know where to get it.鈥
Through what she calls a 鈥渂ox of chocolates鈥 approach of providing multiple types of interventions and using different interventionists, Gibson and the study team were able to identify what was helpful to MCI patients and what wasn鈥檛. They found that participants especially appreciated in-person informational sessions facilitated by experts, like the medication review. Another favorite was a mindfulness class with UK physician John Patterson. M.D.
鈥淎ll of our families loved that session, even though we had to do it over Zoom because of COVID research restrictions,鈥 she said.
On the other hand, most 鈥渉omework鈥 (other than the advanced directive packet) went uncompleted, automated pill dispensers were overwhelmingly a flop, and study partner engagement proved a significant challenge. Some of the participants鈥 study partners were effectively non-participatory. To Gibson, the latter issue demonstrated that many people don鈥檛 have education about the relationship between MCI and Alzheimer鈥檚/dementias, and also that many loved ones of MCI patients don鈥檛 recognize 鈥 or aren鈥檛 ready to acknowledge 鈥 that they might be in a caregiving role down the line.
Gibson is especially interested in issues of caregiving for people with MCI, Alzheimer鈥檚 and other dementias because Alzheimer鈥檚 runs in her family.
鈥淣o one has to caregive for someone. I think people who choose to do so are special people. They鈥檙e committing to this hard, difficult thing and I want to support that,鈥 she said. 鈥淎s I got into this work I realized so many people don鈥檛 have caregivers. Alzheimer鈥檚 disease is one of the most feared diagnosis for older adults, because if the disease runs its course, someone will need to be responsible for you 24/7, and no one wants to need that.鈥
Plus, she said, caregiving isn鈥檛 something a single person can do on their own.
鈥淭his is why I like the Sanders-Brown model, because they have social workers on staff to help families navigate challenges related to disease symptoms, caregiving approaches, or questions of how to pay for care when it鈥檚 not covered by any insurance and can cost $60,000 to $70,000 a year,鈥 she said.
Running a research study also requires a team approach, Gibson has learned.
鈥淚t鈥檚 been a wonderful experience working with the CCTS, which has offered me a lot of support in terms of being new to clinical trials,鈥 she said. 鈥淎nd I could not have done this project without the mentorship of Dr. Greg Jicha, the neurologist and director of clinical trials at Sanders-Brown, especially with COVID when we shut down in March 2020. Somehow we worked through it.鈥
Based on the findings from this study, Gibson plans to continue researching and developing interventions for people with MCI and their caregivers.
鈥淲e鈥檝e learned so much that will inform future studies," she said. "I also want to develop workbooks for families that walk them through an MCI diagnosis 鈥 what it is, what it will mean for them. We鈥檇 like to develop one for people with the diagnosis and one to be shared with family, friends and caregivers. These sorts of materials exist for people with Alzheimer鈥檚 but we don鈥檛 really have good public resources for people with MCI. So I hope to create this with MCI participants and Sanders-Brown.鈥