There is a constant flow of news concerning Alzheimer’s disease and dementia, with a seemingly endless supply of information published daily on possible causes, prevention tips, and the latest on new medical advances and treatments. Despite optimism that there will eventually be some form of a cure, the care of those with memory care needs requires action now.
First on the pharma front. There are currently more than 100 drugs in clinical trials for the treatment of Alzheimer’s disease, the vast majority of which are designed to slow the disease’s progression. However, while it’s important to know about these medications, the reality is that there are no magic pills or miracle drugs.
The good news is that there is a greater understanding than ever about how dementia affects the brain, experts said. As a result, there has been a growing focus on treatments that “short-circuit” the disease’s impact.
Recently, aducanumab received accelerated FDA approval. This, according to the Alzheimer’s Association, “was the first therapy to demonstrate that removing beta-amyloid, one of the hallmarks of Alzheimer’s disease, from the brain reduces cognitive and functional decline” in people with early Alzheimer’s disease. This drug was only studied in people in the early stages of the disease; there is no safety or clinical efficacy data about how it might work in people with moderate and severe dementia.
Elsewhere, the FDA has granted accelerated approval to lecanemab. In trials, this drug slowed cognitive and functional decline in early-stage disease. Much like aducanumab, lecanemab works by removing protein plaques from the brain. The drug has come under some controversy, including questions as to why this medication is demonstrating promise when others based on similar science have failed.
While these new drugs are giving hope to some, they are expensive and likely will be inaccessible to many patients at least for the immediate future. Nonetheless, said Marti Wdowicki, PharmD, director of clinical operations at PharMerica.
“This is a great first step. We are on the right track. I think some day we will get to point where there isn’t one just drug solution but a multipronged approach to prevent cognitive decline.”
There are other treatments being studied, but none of these are likely to hit the market soon. For instance, according to a new study from the National Institute on Aging, hydroxychloroquine may lower dementia risk in humans, although this has only been studies in mouse and cell models to date. However, researchers say that results to date “could lay a strong foundation” for clinical trials involving older adults.
While people are waiting for better, more cost-effective treatments, cholinesterase inhibitors continue to be used most commonly, said David Smith, MD, president of Geriatric Consultants in Brownwood, Texas. These medications, donepezil, rivastigmine, and galantamine, prevent acetylcholinesterase from breaking down acetylcholine, and this may help ease some signs of Alzheimer’s disease, at least temporarily.
“The effects of these drugs are very modest, and side effects are common. It is important to conduct a careful risk-benefit assessment before using them,” he said.
Smith noted that people with Alzheimer’s disease often feel depressed and are grieving the loss of intellect, and this may cause them to act out. Instead of jumping to medications to manage the behaviors, it is important to address underlying depression, anxiety, and other issues. He stressed that exercise and talk therapy can be as valuable as drug therapy for some of these things.
Probing the depths of this depression and how this may manifest itself in individuals is also vital, especially when it comes to taking of one’s own life.
“You need to ask questions and find out how serious they are about suicide,” Smith said. If they’ve already identified a method of suicide and have trouble coming up with a reason not to take their own life, this is serious and calls for active suicide prevention measures.
Wdowicki noted that there are some over-the-counter products available claiming to slow or delay memory decline or sharpen cognition. These include Omega-3 fatty acids (fish oil), ginkgo biloba, turmeric, and apoaequorin.
However, she stressed that these haven’t really been clinically studied and they are not without side effects. In the end, she said, “It’s really hard to say which of these products are beneficial and which aren’t.”
There needs to be communication and collaboration among the resident, their family, the prescriber, and the pharmacist to determine the best, safest course of treatment for each individual. And community staff should stress to residents that they shouldn’t start any over-the-counter drugs, herbals, or other products without first consulting their physician or pharmacist, Wdowicki said.
Beyond possible advances on the prescription drug front, there is the urgent need for care of those who have Alzheimer’s disease and other forms of dementia, and the Herculean effort to slow or prevent the perils of the diseases from happening in the first place.
Sarah Lenz Lock, senior vice president of policy and brain health for AARP, and executive director of the Global Council on Brain Health, said her job is to look for the best ways to empower older adults to choose how they will live as they age.
“And I do that by leading a team that is trying to spark a lifetime of healthier brains and disrupting dementia,” she said. “While there are tremendous opportunities to improve care for people right now through treatments that we already know about and improve quality of life, we are also focused on our six pillars of brain health [see p. XX for the list] as a way to reduce your risk. These modifiable lifestyle factors improve quality of life for people and their caregivers as they’re dealing with this chronic disease that dementia is.”
In addition to the lifestyle factors, there are new technologies that are playing a role in care, notably in the area of artificial intelligence (AI), communications tools, and other methods.
“There’s another example of something called Amicus Brain, where there are solutions and recommendations that AI is being used to facilitate and provide information,” Lenz said. “In the settings of long-term care facilities, there’s all kinds of monitoring devices and wearables and monitoring equipment that is useful. And AI can establish and monitor patterns of behavior in ways that a mere mortal can’t.”
She said she expects AI solutions to help flag issues and track developing conditions, as well as improving the comfort and communications that are available to individuals.
Any advances in tech or drugs are under the greater umbrella of making sure those with Alzheimer’s disease or dementia are receiving patient-centered care. Lenz said the struggles to make such care universal in the long-term setting is based on the same issues affecting care in other areas, such as worker shortages, lack of continuity with caregivers, and reimbursement.
“And, that’s what causes these challenges for dementia care, because we have evidence-based interventions that work. They are just not being adopted on a wide scale,” she said.
When the right care teams are in place, and stay in place, the interventions in a memory care community can work through human-centered methods, be it music therapy or some other method, Lenz added.
Bringing Providers Together
Doug Pace, senior director, long-term and community-based care, Alzheimer’s Association, said another key to the fight is to keep providers on the same page, with his group and collaborators working on a regular basis to update standards and recommendations based on person-centered care.
“Basically, our very first recommendation is knowing your person [resident]. It starts there. And then once you know the person, you’re really able to recognize and accept that person’s reality,” he said. “And, once you do that, then you can really slow it down in a more meaningful way. Every person is different and every person with dementia is different.”
An example would be if a caregiver knows that music is something that really helps a resident then you can explore that and see what kind of music the resident likes, or maybe they are a dog person or a cat person. You learn more about everything, what really brings them joy. And, then you use that information for your interactions and in caring for them.
Pace also leads the association’s work with its Dementia Care Provider Roundtable (www.alz.org/professionals/professional-providers/care-provider-roundtable). “The nice thing about that roundtable, it gives everyone an opportunity to have a dialog across different settings and is really focused on the care I can give you for the resident,” he said.
There are also online training programs that are part of the basis of the association’s dementia practice recommendations. “This is because one of the things that we know is crucial is that communities have staff that are appropriately trained on dementia care,” Pace said.
Making an Impact
For Sarah Hoit, founder and chief executive officer, Social Impact Partners, and career social entrepreneur, the battle against Alzheimer’s disease is intensely personal. Her grandmother had the disease, and more recently her husband was lost to early-onset Alzheimer’s and passed away this last August.
“I am committed to solving Alzheimer’s and dementia, which I believe is the greatest pandemic our world faces. When you look at the numbers it is also the most under-reported, and if you look at our industry and who is really in our buildings, it might be reported that 40% or 50% have it,” she said.
Her new group, Social Impact Partners, is about triggering a more robust effort to start thinking about healthy aging and brain health, and the fight against Alzheimer’s disease and dementia.
“What all of us who are in this battle realize is Alzheimer’s is the only major killer with no known cure. Someone is diagnosed every 3 seconds. We currently have 157 million people in the world diagnosed. That’s a way under-reported number that will double in the next 20 years. It affects every single family and the caregivers very profoundly, who are also the customers of senior living,” Hoit said.
Right now there is not enough funding or innovation, she explained, so Social Impact Partners is working to pull together all the major trade groups with ties to Alzheimer’s and dementia, to make a difference, and quickly. “This is an opportunity for all of the people to work together, a chance for the for-profits, the non-profits, the business people, the vendors….”
Staffing at Core of Problem
Beyond the specific issues tied to solving the Alzheimer’s disease and dementia puzzle is a more general barrier impacting senior living and all levels of healthcare, which is staffing. Hoit said “one of the real crises in this industry is not only the funding and innovation around this, it is the fact that we have no people and we are massively understaffed as an industry. And, so we have to also entice young people into this industry to get into the battle.”
Words only do so much, she noted, so to take action Hoit’s group is starting something called the Innovation Olympics. “This is a chance for our members to get into the battle and gather together around the question of how could we orient our businesses toward healthy aging and brain health.”
The Innovation Olympics will see student teams from leading universities and from all over the globe participants, which she hopes will lead to competition amid the schools and even more innovation to help those with Alzheimer’s and dementia.
“And of course, it’s going to be matchmaking. The hope is that these innovators enter our industry with fresh ideas, and I believe we need to talk to the younger generation differently. One of my past startups was AmeriCorp, which was our domestic Peace Corps, And, people were really proud to be a part of that,” Hoit said.
“When I put out a job description for employees for my Connected Living technology company, I get hundreds of resumes. When the senior living groups put it out, they get very few,” she said. “Part of this discrepancy is about how we’re talking to people. So, the goal is create this whole corps of young people who are engaged around our members, wanting their opinions, eliciting their participation and innovation, and then grabbing them into the business is just a match made in heaven.”
Learn more about Social Impact Partners and the Innovation Olympics at https://socialimpact.partners/. For the Alzheimer’s Association, go to www.alz.org, and for AARP, go to www.aarp.org.