Optimism is hard to muster in the face of recent statistics on dementia in Kentucky – particularly Alzheimer’s disease – but some sense that slow progress is occurring emerges from a pair of researchers who each have over three decades of experience in the field.
Linda J. Van Eldik, Ph.D., director of the Sanders-Brown Center on Aging (SBCoA) and the UK Alzheimer’s Disease Center (UK-ADC), and Greg Jicha, M.D., Ph.D., a clinical neurologist at UK, co-director of the UK-ADC and director of Telemedicine Cognitive Clinic, have dedicated their professional careers to dementia research, provider and caregiver education, and clinical treatment of patients with dementia.
At the start of our discussion, both doctors stressed two critical points:
• Problems in thinking and memory loss are not normal facets of aging.
• Alzheimer’s disease is not the only form of dementia affecting people in Kentucky.
Alzheimer’s is the most prevalent, but there are other forms of memory loss. Some problems are attributable to complications from vascular disease and sometimes can be treated. When a family member or friend is struggling with problems in memory or thinking, it’s important to determine a cause before jumping to conclusions.
“Alzheimer’s is a disease. Like any other chronic illness, it has a recognizable pathology. Unfortunately, it is one for which medications and treatments have thus far not been very effective,” Van Eldik said. “But there are times when we find people are suffering for reasons that can be treated.”
As research advances understanding of dementia and its effect on the brain, expectation grows that there will be a breakthrough. In the meantime, though, the disease exacts a steep emotional and economic cost – one that extends far beyond patients and their families.
Over $236 billion was spent on hospice, home care and long-term care for the needs of those suffering from some form of dementia, according to the 2016 Alzheimer’s Disease Facts and Figures report, published by the Alzheimer’s Association.
And that’s just half the story. The $236 billion figure only counts what was billed.
Unpaid caregivers, family members and volunteers provide the clear majority, about 83 percent, of care to patients with dementia, said Bari Lewis, director of communications and advocacy for the Greater Kentucky and Southern Indiana chapter of the Alzheimer’s Association.
Nationally, in 2015, unpaid caregivers provided approximately 18.1 billion hours of assistance to people with dementia. In economic terms, it was a contribution of over $221 billion in unpaid care. For perspective, the Alzheimer’s Association said the amount of unpaid care in the United States was about “47 percent of the net value of Walmart sales ($473.1 billion) and eight times the total revenue of McDonald’s restaurants ($27.4 billion) in 2014.”
In Kentucky, the numbers are similar. The estimated hours of unpaid caregiving in the Bluegrass state affect 270,000 people, not including patients. Those people provide about 307 million hours in unpaid care at an estimated worth of over $3.7 billion. Add an extra $166 million in overall added healthcare expenses, job and wage losses to provide care, and reduction in available workforce.
There has been a decline in Kentuckians diagnosed with some form of dementia in recent years, Van Eldik added, but the patient population hovers between 68,000 and 80,000 adults.
32nd year of NIH funding at UK
The UK Alzheimer’s Disease Center at SBCoA is entering its 32nd year of continuous research funding from the National Institutes of Health. It is one of the first Alzheimer’s centers to be NIH-funded and remains one of eight centers in the United States to continue receiving funding. In fact, last September, NIH renewed its long association with the UK-ADC with a five-year, $8.25 million grant to continue its research and clinical initiatives.
One of the keystones of UK-ADC’s NIH research is an ongoing longitudinal study of about 800 volunteers. These people annually undergo extensive neural imaging, donate spinal fluid and participate in a battery of exams to track the health of their brain. It’s given the center an incredible amount of data regarding the cognitive health of a stratified population of individuals. Members of this cohort cover a wide demographic involving several generations, including some children of former volunteers, Van Eldik said.
“Sanders-Brown is blessed with an amazing population of volunteers for our cohort and other independent research trials. Following them for over 30 years has given us a ton of data on people whose brains remained cognitively healthy their entire lives, others who developed some level of cognitive impairment, and some who developed Alzheimer’s Disease or some other form of dementia.”
The accumulated research from SBCoA and the other national research centers has not found a consistently effective treatment for the disease but has enabled specialists to recognize the pathology of Alzheimer’s and to study individuals whose brains appear to be resistant to the disease.
“We can see the pathology in a person’s brain and identify the specific neural breakdown that is occurring, even if we haven’t yet figured out how to stop or reverse it,” Van Eldik said.
Intriguingly, some patients in the longitudinal study develop the pathology of Alzheimer’s but manage to maintain normal memory and thought processes for years. Van Eldik describes these patients as having what she termed a “cognitive reserve” or resilience to the disease. Others were profoundly affected by the exact same stage of the disease.
Researchers don’t know why one brain is resistant and another is not.
One thought is that persons with cognitive reserve may have developed a larger number of neural connections than others. Researchers do know that the brain has incredible “plasticity,” constantly building networks of neural pathways to process the constant barrage of information it receives. Throughout its life, even into old age, the brain can develop multiple new pathways that can, if necessary, operate like built-in redundancies.
Those who demonstrate cognitive reserve may have developed a dense network of pathways, Van Eldik explained, so that when Alzheimer’s manifests and begins destroying brain cells, the other pathways can compensate. This hypothesis is one of many being studied in research trials ongoing at SBCoA.
Being resistant, however, does not mean people are immune. Even in cases of cognitive resilience, there comes a point where patients enter a period of decline that’s often very rapid. For those who cannot tolerate the disease’s pathology, though, the process of decline tends to be a steady accumulation of problems. It can go on 10 to 15 years, Van Eldik said.
And it is this steady decline that tends to wreak the most havoc on families.
Telemedicine expands access to specialists
“There is a changing consciousness in America about aging people,” Jicha said in the breakroom of the clinical offices of the SBCoA in Lexington.
As more Kentucky families experience life as caregivers for dementia patients, there is an increasing emphasis on locating support services, Jicha said, but they often come up empty-handed in their own small communities and have to seek out services elsewhere.
The increasing desire for convenient access to local services is limited by fiscal realities. Aside from the concentrations of people in Louisville, Northern Kentucky and Lexington, Kentucky’s population is sparsely distributed, which makes specialized local care in smaller communities difficult for healthcare systems to provide.
The UK Telemedicine Cognitive Clinic represents a major innovation in clinical outreach, which the SBCoA pioneered a little more than decade ago.
“We in Kentucky need to think differently about how we can provide access to highly specialized health and support services to the population,” Jicha said. “Telemedicine has given UK leverage to provide people across the state access to medical specialists and still manage costs in terms of needed capital to maintain those programs, support services, and providers in highly specialized fields.”
At the time that Jicha became involved in telemedicine, there was no model on which to build a Telemedicine Memory Clinic. Jicha’s research team was awarded a grant to validate the use of telemedicine to conduct cognitive assessments of patients versus in-person interviews.
The results of these studies allowed the research team to definitively conclude that memory evaluation was equally valid through telemedicine as personal office contact. In two outlying examples, a patient and their family were even more honest in a telemedicine setting. It was not enough data to draw a definitive conclusion, but Jicha feels there are times when telemedicine’s distance enables people to be more honest than visiting the clinic – being in a home setting may be a factor.
The important outcome, though, is that the study confirmed the validity of telemedicine encounters, he said, and enabled Jicha to expand the reach of his clinical work to outlying areas of Kentucky. On a given day, he can conduct appointments for patients in Lexington and remote clinical assessments of patients from Calloway to Menifee County. Neither he nor his patients spend costly hours traveling, and patients gain the convenience, at a critical time in their lives, to access reliable care while in a place where they are most comfortable.
“Another novel development of the study is that our results were translational to other spheres of clinical service. What we do for memory can be easily translated to other research and clinical services in cardiac care, arthritis and other conditions,” Jicha said.
Caregiver networks and education
Perhaps more than any other disease, dementia strikes broader and harder on caregivers than trained professionals. When it comes to serving Kentucky patients with dementia, telemedicine’s powerful and expanding videoconferencing capabilities could be considered its most important innovation.
Sanders-Brown, in association with the Alzheimer’s Association, uses videoconferencing to host four major statewide training sessions for caregivers each year. The quarterly sessions enable specialists to update families across Kentucky on research and advice on care, but some think the most important aspect is the time allotted to families to relate stories, shared insights and personal experiences.
“Though I had experience as a nurse, I was frequently challenged by my mother-in-law’s needs. These educational sessions, combined with our community support network, gave me some practical feedback and let me know I was not alone,” said Mary Horsley, an RN whose mother-in-law, Mary Lois “Bingo” Horsley, was UK telemedicine service’s pilot patient in 2005.
Videoconferencing has expanded into continuing medical education programs for professionals at long-term care facilities. A further educational initiative application is being explored for first responders and community leaders to develop “dementia-friendly communities,” said Bari Lewis of the Alzheimer’s Association.
Future opportunities for growth in the private sector
“We are living in a society where there is a dichotomous split. If one is solely dependent upon Medicare or Medicaid, the availability of private-sector resources to help care for patients with Alzheimer’s is quite expensive,” Dr. Jicha said. There are nursing facilities especially designed for persons with dementia. They have resort-like features, but they can cost upwards of $5,000 to $10,000 a month, which is more than the average family can afford.
Hospice and home care services are growing to meet the rising demand. In terms of home health services and transportation, Kentucky is growing more and more sophisticated all the time, Jicha said. But one area has not been nearly as well developed.
In the realm of specialized technology for folks in the early stages of dementia, Kentucky is “behind the ball,” even though the means to produce these devices exists, Jicha said.
These devices can help people remain in their homes for longer periods of time, which is becoming more important with each passing year. There are badges people can wear or that can be sewn into clothing that would allow for improved GPS tracking should a loved one wander off. Automated pill dispensers which, in the latter stages of the disease, can be programmed, alarmed, and timed to reduce the incidence of medication errors. Phones with pictures and pre-programmed numbers are available but don’t have widespread distribution.
GPS devices to help people with mild cognitive impairment re-orient themselves to their location would reduce some unnecessary moments of stress and fear, he continued.
“There is an estimated population of some 1.5 million people over the age of 65. A percentage of them will develop some level of cognitive impairment. There is a tremendous market out there for anything that will permit individuals to live in their homes or with their families longer. But it’s a market where demand is not being met with the same vigor as other areas of medical device development. It’s only constrained by the imagination of what an aging population may need,” Jicha said.
Hope for the future
While lack of effective treatments for dementia persists, there are plenty of ways to measure progress. Decades into the fight against the disease, Jicha and Van Eldik say growing education and caregiver experience is helping society becoming more sophisticated in dealing with it. Families with Alzheimer’s patient experience are talking openly with and passing knowledge to others whose journey is beginning.
Alzheimer’s is complex and differs from patient to patient. At this stage in clinical research, Van Eldik said, there is a growing consensus among colleagues that no single silver bullet will be found. The prevailing sentiment is that successful treatment might be found in a medication “cocktail” such as has proven effective with HIV patients.
The Alzheimer’s Association awarded Van Eldik’s research team a two-year, $1 million “Part the Cloud” grant to test a drug that may reduce brain inflammation. Van Eldik is optimistic a balance of medications targeting symptoms can be formulated to help slow the progress or even temporarily halt pathology.
“There are estimates that if the onset of symptoms can be delayed through medications or other treatments for just five years, it could cut the rate of incidence for dementia in half. Eventually, we would like to find a cure, but if we could just find something to delay onset, that would be tremendous,” Van Eldik said.
Developing an effective combination approach is going to demand a lot more investment in research, but Van Eldik said federal, state and private funding for research into Alzheimer’s disease and dementia has increased, particularly in the last decade.
Although money spent on cancer or HIV research still dwarfs funding for Alzheimer’s research, she said, “a little goes a long, long way. There is a huge return on investment. Discoveries about the disease are being made at an increasing rate.” ■
Josh Shepherd is a correspondent for The Lane Report. He can be reached at [email protected]