Ann Longterm Care. 2017. Published online October 13, 2017.
The author has no relevant financial relationships to disclose.
Associate Director of Research and Director, Center for Neurodegenerative Science, Van Andel Research Institute, Grand Rapids, MI
With age as the most important risk factor for Parkinson disease (PD), diagnosis and management of this neurological disorder are ever-present concerns for geriatricians and other long-term care (LTC) professionals. Indeed, PD is the second-most common neurodegenerative disorder affecting the older adult population1—a population steadily increasing everyday. Being equipped with the latest research related to caring for older adults with PD is essential in order to provide them with the highest quality medical care.
The occurance and intensity of PD symptoms can vary from day to day, and patients with PD may even be unaware of changing physical abilities, making it necessary for facilitites to retain clinicians and LTC professionals with skill and patience when it comes to daily care for these residents.2 Improved rates of survivorship along with the increasing rate of the over-65 population means that more and more people with PD will reside in LTC settings in need of enhanced and individualized care.3 Ongoing education in the wide variety of PD symtoms and complex medication regimens is important for these professionals.2
With constant advances in research and clinical care knowledge, Van Andel Research Institute Associate Director of Research and Director of the Center for Neurodegenerative Science (Grand Rapids, MI), Patrik Brundin, MD, PhD, and his coauthors endeavored to review the newest discoveries in the study of PD in order to supply clinicians with an in-depth, cumulative summary of PD pathology and molecular pathogenesis, outlining the newest advances in clinical diagnostics, screening standards, and current and future therapies as well.
For more insight into how this comprehensive primer on PD1 practically translates to LTC professionals’ daily work, Annals of Long-Term Care: Clinical Care and Aging spoke with Dr Brundin about LTC-specific concerns related to the care of older adults with PD. As one of the top-cited researchers in the field of neuroscience and with more than 300 publications on PD and related topics, Dr Brundin is well-positioned to discuss the most applicable findings from the review.
Please discuss the prevalence of PD in the older adult population in the community as well as PD prevalence in nursing facility settings. What impact does PD prevalence have on health care resources and professionals in these settings?
The strongest risk factor for developing PD is age, with the majority of cases diagnosed after age 50. In the United States alone, about 60,000 people are diagnosed each year, and between seven and 10 million people have the disease worldwide. To put that into context, about 2% to 3% of the global population over the age of 65 has PD.
A 2015 Neurology report from Safarpour and colleagues3 indicated that, in 2002, almost 25% of the 469,055 Medicare beneficiaries with PD identified by the team lived in long-term care facilities (LTCFs). For many of these patients, dementia and hip fracture were significant factors in their placement. As the global population ages, these figures are slated to increase. Between 2005 and 2030, the number of people with PD is expected to double due to improvements in health care that have extended average lifespan across the board. This fact also means years lived with disability are rising as well, underscoring the importance of focusing on patients’ quality of life. As a result, health professionals who work in LTCFs will likely require additional resources to sustain a high-level of patient care.
Please outline the best strategies and tools for the diagnosis of PD in nursing facilities based on the latest research.
One of the greatest unmet needs in PD treatment is the lack of a definitive, objective test for the disease, such as a blood test or a brain scan. Currently, physicians rely on detailed medical histories coupled with a neurological examination in search of bradykinesia (slowed movement) and at least one other main indicator of PD, such as rigidity, tremor, or postural instability.
A positive response to levodopa—the gold standard treatment for PD—also is a strong signal that the person has the disease. However, without an effective test and in light of the disease’s likeness to other neurological conditions, such as multiple system atrophy and progressive supranuclear palsy, misdiagnosis is still a problem. Given these factors, it is strongly recommended that patients consult a movement disorders specialist.
An additional note on medical histories: most people who are eventually diagnosed with PD may show symptoms—such as loss of sense of smell, difficulty sleeping, or gastrointestinal issues—years or even decades before onset of the disease’s hallmark motor symptoms. It is critical that questions about these precursor conditions be included in any medical history.
Given the advanced age of most residents with PD, what does the latest research recommend in terms of treatment, management of symptoms, and palliative care? What factors should be considered while making clinical treatment decisions for PD?
Currently, there are no established treatments that slow or stop disease progression or that repair damage. Although levodopa mitigates motor symptoms by replacing lost dopamine in the brain, it can come with side effects such as dyskinesias (uncontrolled movement), and it typically becomes less effective over time. Some patients opt for deep-brain stimulation (DBS) surgery in which a small power source is implanted in the chest and wires run into the brain, delivering minute doses of electricity to alleviate some of the motor symptoms. However, there are substantial exclusion criteria associated with the surgery. As such, most people who undergo DBS are younger.
Nonmotor symptoms such as depression, constipation, and trouble sleeping also must be managed to ensure quality of life. How this is done is largely up to the patient and their physician; there is no one-size-fits-all solution. Care regimens should be tailored to each individual person.
In recent years, the treatment of PD has expanded beyond drug and surgical interventions and into areas such as physical therapy, vocal therapy, and nutrition. The benefits of exercise cannot be overstated; an increasing body of evidence suggests that these activities help mitigate symptoms and improve well being. One recent study hinted that two-and-a-half hours of exercise per week4 was associated with a slower rate of decline over a 2-year period. The benefit was seen not only in those who regularly exercised before the study but also in a group who began regular exercise after enrolling in the study.
Some advantages also may be gained through vocal exercise, which may help people stave off the gradual onset of quiet speech. Lastly, ensuring a proper diet may aid in management of gastrointestinal issues, such as constipation.
Although we did not address palliative care in the Primer, I think the goal is the same in PD as in other end-of-life situations—ensuring the well being and comfort of the patient. Given the nature of PD and its progression, it may be difficult to determine exactly when this specialized care should begin. Close consultation with the patient and his or her movement disorders specialist and other medical professionals is essential. These conversations are difficult to have, especially earlier in the disease, but it is important that the patient’s wishes are made known.
What practical changes can LTC physicians and administrators make in their facilities to increase the quality of life for residents with PD? What can staff members do on a daily basis to improve the care for residents with PD?
Education, understanding, and compassion are critical. As we learn more about PD, it is becoming increasingly clear that it is not just a movement disorder—it is a complex constellation of conditions that vary greatly from person to person. There is no typical case—some people progess faster, some people respond better to treatment and person A may have vastly different syptoms from person B. Listening carefully to the person can go a long way.
It is also important to remember that people with PD are not immune to other health challenges that accompany advanced age, many of which can be exacerabated due to the disease’s presence. In fact, the majority of people with PD experience a host of nonmotor issues as their disease advances, which often play a role in LTCF placement. One study5 found that of people who lived more than 20 years with PD, 83% experienced dementia, 74% experienced hallucinations, and 71% experienced urinary incontinence. Depression also is frequently reported. In terms of motor symptoms, 81% had freezing of gait, 87% had postural instability and falling (35% of which led to fractures), and 48% experienced choking. Some of these symptoms, such as hallucinations and dyskinesia, may be side effects of the dopaminergic drugs used to treat PD rather than a result of the disease itself and require careful evalution by a physician.
Fall prevention is paramount, as this is a problem for the aging population in general and is even more pronounced in people with PD. Freezing, postural instability, and dyskinesias can all result in loss of balance and subsequent falls, the damage from which may be compounded by other age-associated conditions such as osteoporosis. Hip fracture is a special concern as it can lead to immobility and contribute to early mortality.
Overall, we must put an emphasis on caring for and treating the whole patient to ensure the highest quality of life possible. We also must listen carefully to people with PD and take their concerns and their input seriously. Treatment should be a collaborative effort.
Please discuss some of the most exciting findings that can be read about in the PD Primer related to the daily clinical management and treatment of PD in older adults.
Our goal with the Primer was to create a comprehensive review of the latest research as it relates to all aspects of PD, from underlying pathology to quality of life. On the basic science and translational sides, a major goal is finding disease-modifying therapies to slow or stop the disease. The field has come a long way in understanding the mechanisms that drive PD and is working to leverage those findings for therapeutic benefit. As a result, several clinical trials are underway in promising drugs, many of which were developed to treat other conditions such as diabetes.
On the clinical management side, the shift from considering PD solely as a movement disorder to viewing it as a multisystem disease with an array of associated conditions is critical. This change in approach opens new avenues of treatment aimed at improving quality of life by treating facets of the disease that for many years were thought to be unrelated. Much of this has come about thanks to the advocacy of people with PD, who are an invaluable asset in the fight to improve treatment and cure the disease.
1. Poewe W, Seppi K, Tanner CM, et al. Parkinson disease. Nat Rev Dis Primers. 2017;3:17013; doi:10.1038/nrdp.2017.13
2. National Parkinson Foundation. Special challenges of caring for someone with PD: understanding the disease and being realistic about experiences and needs. National Parkinson Foundation website. http://www.parkinson.org/understanding-parkinsons/caring-for-someone-with-parkinsons/special-challenges-of-caring-for-someone-with-parkinsons. Accessed July 20, 2017.
3. Safarpour D, Thibault DP, DeSanto CL, et al. Nursing home and end-of-life care in Parkinson disease. Neurol. 2015;85(5):413-419.
4. Rafferty MR, Schmidt PN, Luo ST, et al. Regular exercise, quality of life, and mobilityin Parkinson’s disease: a longitudinal analysis of National Parkinson Foundation Quality Improvement Initiative Data. J Parkinsons Dis. 2017;7(1):193-202.
5. Hely AM, Reid WGJ, Adena MA, Halliday GM, Morris JGL.The Sydney multicenter study of Parkinson’s disease: the inevitability of dementia at 20 years. Mov Dis. 2008;23(6):837-844.
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