A Conversation With Dr. Beate Ritz, M.D, Ph.D. About Parkinson’s Disease, Lewy Body Dementia and Autism (Sept. 1, 2020)
From ElderLaw Report: Article Authored By Jane M. Fearn-Zimmer, Esq.
Recently, I spoke with Dr. Beate Ritz, M.D., Ph.D, who is currently Professor of Epidemiology at the University of California at Los Angeles Fielding School of Public Health, with a co-appointment in Neurology. She is one of the nation’s foremost experts in Parkinson’s Disease (PD) research. In 2011, she was recognized for her outstanding contributions to the field by the American Parkinson’s Disease Association (APDA). She has spent more than a decade as the co-director of the University of California at Los Angeles Center for Gene-Environment Studies in Parkinson’s Disease and is the Interim Director for the APDA Center of Excellence in Parkinson’s Disease Research.
Dr. Ritz has been investigating the long-term effects of pesticide exposures on PD and cancers since 1995. For the past two decades, she has also studied the effects of air pollution on adverse birth outcomes as well as asthma, autism, and cancers in children in Southern California.
Here are some of the insights she shared into her work with patients with PD, Lewy Body Disease (LBD), how a combination of factors including genetics, the environment and the individual’s accumulated exposures to toxic chemical compounds over a lifetime can impact the progression of PD, LBD, and even Alzheimer’s disease, and what methodologies we can glean from the German health system in caring for individuals with PD and LBD.
Chemical and environmental factors. Dr. Ritz has done a lot of work regarding the influence of environmental and chemical factors on whether an individual will develop PD. Chemical and environmental factors are very important. We now know that certain pesticides have something to do with PD, genes play a role as do neurotoxins. Over a lifetime, you may accumulate a lot of insults to the brain that lead you to develop PD and even Alzheimer’s disease.
Cognitive decline research. Among other topics, Dr. Ritz is known for her research into the rate of cognitive decline and motor progression in PD. [Paul, Schulz, Bronstein, Lill, and Ritz, Association of Polygenic Risk Score with Cognitive Decline and Motor Progression in Parkinson Disease, JAMA Neurology, 2018 Mar; 75(3); 360-366, available online at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5885856/ ]. So I asked Dr. Ritz if there was technology or testing available which could predict the rate of progression and cognitive decline in clients with PD, LBD and other forms of dementia. If elder law attorneys and their clients could reliably predict the rate of progression of cognitive impairment, they would know with more precision when caregiver burden would increase, and would be better able to fine-tune their long term care and asset protection plans for non-crisis clients, since those plans are prepared well in advance and are subject to revision with changes in the client’s care and care costs. The ability to predict the rate of progression would also be relevant in the long term care industry.
Hard to predict outcomes. According to Dr. Ritz, the relationship between genetics and aging outcomes, including cognitive decline and death, is very complex. The rate of progression of PD can be very hard to predict. She repeated a saying in the Parkinson’s community that if you have seen one Parkinson’s patient, you have seen one Parkinson’s patient. You have to watch your patients and see how they progress. What we do know is that the rate (and even the possibility of) progression will vary depending upon the pathology of the client.
Dr. Ritz explained that more than one-third of patients with PD and dementia (PDD) also have considerable additional Alzheimer pathology and others, have vascular pathology ( i.e., transient ischemic attacks, mini-strokes) or some combination thereof responsible for progression and cognitive dysfunction. If the client is diagnosed with LBD, dementia precedes motor dysfunction and the Lewy bodies spread through the brain in a different pattern.
Dr. Ritz observed that rarely do we encounter cases of pure PD without some other factor. There is a growing consensus in the scientific community that LBD and PD are different manifestations of the same disease in different regions of the brain. Cognitive dysfunction generally precedes the onset of motor symptoms in LBD; PD is indicated when motor symptoms are detected first, with cognitive impairment evident later.
Series of “insults.” Dr. Ritz likened the aging process to a series of “insults” (or assaults) to the brain and the body over the course of the client’s lifetime. Like drops of rain that fill a bucket, the accumulated insults over a lifetime can influence an individual’s susceptibility to a range of diseases, including PD disease, and disease progression in multiple domains. “Insults” can be genes, environmental factors such as pollution, neuro-toxins or chemical exposures, or physical factors ( i.e., vascular disease or Levy body formation). The more different “insults” the brain receives, the greater the likelihood is that the client will experience dysfunctions, such as depression, cognitive decline, and pain. And we know statistically and through our experience as elder law attorneys that the greater the cognitive decline, the greater the caregiver burden, and it is caregiver burden that drives the long term care planning industry.
Pollution factor. Based on Dr. Ritz’s research, the elder law community should take an active interest in federal and state governmental policy interventions regarding pollution. National health and nutrition surveys that collect stratified random population samples have found pesticides in urine and blood, but exposure profiles may be higher in individuals who live near a golf course, an airport, or a harbor, and in people who spray for spray for insects in the garden.
Control risk. Developing PD at a younger age is usually associated with a strong genetic risk related to familial PD. Polygenetic PD risk scores relate to PD susceptibility and it has also been shown that individuals with elevated scores tend to experience faster cognitive and motor decline after being diagnosed with PD, but genetic factors are not the only factor influencing progression. The environment also must be taken into account, because these genetic component may only contribute to a part of the overall risk. More importantly, it is the environmental factors that we can control – at least somewhat – even if they only push the extra “drops” of risk into the bucket., Thus, the client will be well advised to eat lots of organic fruits and vegetables, adhere to the Mediterranean diet, engage in physical exercise, and cognitive activity, and partake in activities geared to help maintain an agile mind and adequate social support from families and communities.
Clients and their families should be counseled to purchase long-term care insurance; the client who is already diagnosed with PD will not likely be able to qualify for a policy post-diagnosis, but the healthy spouse, if there is one, could benefit from his or her own long-term care insurance policy, and so will the adult children, who may be an increased risk of PD.
As far as what to expect with a PD diagnosis, eventually the client will not be able to move around well, they will start tripping and falling, they will become physically more and more impaired, but what is worse for the relatives is the depression, the feeling of being a burden to their family and, in some cases, the apathy i.e. not being motivated to do anything. These symptoms are much harder for the family to tolerate. Dr. Ritz notes that the motor dysfunction will keep clients from doing things that they could do with effort, and she encourages caregivers not to do too much for their loved ones with a PD diagnosis, to avoid learned helplessness. PD patients will learn not to do things themselves, which further decreases their level of functionality due to the increasing inactivity. This is why it is important to encourage PD patients to do as much as they can for themselves. The importance of avoiding learned helplessness could be incorporated as a theme in your life care planning practice and your PD support group or in an elder law blog post.
Support network crucial. It is critical for caregivers to have a strong social support network and opportunities for respite. It is also very important for PD patients to be encouraged to attend a support group, and to learn from other PD patients what has worked and what has not worked, as some things may be very individual. Your elder law office could market your legal and life care planning services and support existing clients and caregivers by organizing a support group. Another service to your prospective and active clients is to keep literature on PD and related non-profits in your waiting room. Materials prominently displayed in your waiting room or conference room could include grants for respite care. Your firm might consider banding together with other professionals in the elder care industries to start a “go fund me” page to fund respite care for a lucky caregiver. As for end of life care, PD clients, like other clients, should be encouraged to seek hospice care and supports.
Determine the “best care plan.” So if a client recently diagnosed with LBD or PD comes into your office, and you are a life care planning practice, how do you determine the best care plan that client? Do you refer them to a university medical center with a neurology clinic? Dr. Ritz did not think this was necessary in many cases. Rather, if the client is diagnosed with plain PD and presents with minimal motor symptoms, that client’s care could probably be managed by a local specialist, where he or she can receive speech therapy, physical therapy and all of the other medical care and therapies that an individual needs to maintain their level of functionality as long as possible. According to Dr. Ritz, a good reason to seek care at a university hospital is to participate in experimental treatments that may slow the progression of the disease. Absent such interventions, it makes sense for the client to have a good relation with a local specialist, and to receive the therapies needed to maintain the current level of functionality as long as possible.
Dr. Ritz attended medical school in Germany and worked in the German health system, which has a lot of different options when it comes to elder care. Germany has a system of mandatory health care with different options and, depending on the insurance options you select, there are levels of care; for instance, there may be greater access to physical therapy sessions in one system than another. The Germans are also very strong believers in traditional cures such as “taking the waters” and it is common to spend a period of three to six weeks at a facility to “take the cure” and receive physical therapy, emotional therapy, occupational and other types of therapies, along with social support groups. So in the German health care system, there are a lot of ancillary services that elderly individuals can take advantage of that can help them maintain their maximum level of functionality as long as possible.
COVID-19. As for the impact of the COVID-19 pandemic on PD populations, Dr. Ritz notes that these patients are extremely vulnerable. As soon as they are quarantined or confined to the home, they are probably much less physically active, they are probably not exercising or swimming, and this may increase the rate of motor decline impact. The lack of exercise and socialization is also bad for their psyches, placing them at greater risk for depression and loneliness, which will worsen as their cognitive decline progresses, and they are going to have to work much harder to maintain their level of functionality.
Autism study. Dr. Ritz also does a lot of research relating to autism and says that there are now therapeutic interventions that can help some individuals who are not too severe on the autism spectrum to gain certain functions that they would not have otherwise had. California’s Department of Developmental Services has had some success in gaining and preserving functionality in this cohort of children with autism spectrum disorder through early intervention services with very intense training, both physical and mental. It also very important to help the parents cope and understand what is going on and to guide them and provide support for the lifelong journey that they are embarking on with children with autism spectrum disorder.
If you can pick up autistic features by age one or earlier, you can guide the parents into talking to their children earlier, and there is the possibility of making early gains prior to the time the child reaches 18 months in age. After that time, it is much more difficult to make strides with speech therapy.
Dr. Ritz commented that it is very difficult to pick up autism before age one, but you would look for behaviors such as the lack of eye contact with the mother when being fed or a lack of returning a smile. Dr. Ritz described post-natal care in the German system, which is very stringent. The mother is required to return to the pediatrician with the child after two weeks, four weeks, three months, six months, one year, and 18 months, and there is a stronger screening process. The pediatrician enters all of the immunization and development information in the baby’s health book, and the information in this book is used to symptomatically screen for changes and conditions like autism earlier in the child’s life than would be the case in the United States health system.
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