The Imperfect Caregiver

Parkinson’s Disease and Dementia: A Caregiver’s Primer
By Leslie Vandever

Parkinson’s disease is a gradual, progressive, degenerative disorder of the central nervous system. It causes nerve cells in the brain to stop producing enough of the chemical dopamine, which is vital for regulating movement.

Parkinson’s diseases causes tremors, muscle stiffness, slowed movement, impaired balance, and problems with standing, walking, and gait, and reduced facial expression.

Other symptoms—called non-motor or dopamine non-responsive symptoms—may include cognitive impairment, trouble sleeping, mood disorders, constipation, problems with speech and swallowing, low blood pressure when standing, unexplained pain, drooling, and the loss of the sense of smell.

Dystonia—an involuntary, prolonged muscle contraction—is also common with Parkinson’s disease. Sometimes associated with pain, like cramps, dystonia can involve an isolated area or the entire body. Caused by a lack of dopamine in the brain cells, dystonia is generally treated with L-dopa (levodopa), a medication that raises dopamine levels.

Another symptom, dyskinesia, is “a difficulty or distortion in performing voluntary movements,” according to the Michael J. Fox Foundation for Parkinson’s Disease, This one, however, isn’t caused by the disease itself. It’s a side effect of long-term therapy with levodopa.

Depression and other mental health issues are also common.

Around a million people in the U.S. live with Parkinson’s disease, and about 5 million worldwide. One in 100 people over 60 get the disease, but people as young as 18 have been diagnosed. Men have a somewhat higher risk of getting the disease than women.

Scientists don’t know what causes Parkinson’s disease, or why some people get it and others don’t. Over the last 10 years researchers have started to find evidence that genetics and environmental factors, either by themselves or combined, may be involved. Most scientists agree with this theory.

There is no cure for Parkinson’s disease. But the research into better treatments—and eventually, a cure—is ongoing.

The disease is, by itself, a hugely disruptive—even devastating—turn in the life of anyone diagnosed with it. The same goes for the caretaker. As Parkinson’s progresses, the caretaker must manage medications—many of which are taken on a careful schedule that can’t be disrupted without causing consequences—and at the same time, help the patient cope with the characteristic physical and mental symptoms of the disease. It can be, in a word, exhausting.

Now, add progressive dementia into the mix. It strikes a minority of Parkinson’s patients, either in the form of Parkinson’s dementia or Lewy Body Dementia. “LBD” is the umbrella term for both, though their earliest symptoms differ. Generally, people whose dementia occurs within a year of their Parkinson’s diagnosis are also diagnosed with LBD.

Lewy Body Dementia is named for the scientist Friedrich H. Lewy, who, in 1900, discovered these abnormal protein deposits (bodies) in the brain. They disrupt its normal functioning, including perception, thinking, and behavior. LBD strikes each person differently, and the symptoms can fluctuate from hour-to-hour and day-to-day.

Symptoms may include impaired cognition, attention, and alertness; well-formed, detailed, recurring hallucinations; hallucinations of touch and hearing; visuospatial abnormalities; and loss of consciousness and falls. They may also include REM sleep behavior disorder (RBD), in which the patient may act out his dreams while sleeping.

Caregivers for people with Parkinson’s disease and RBD should, first and foremost, take care of themselves, both physically and mentally. It’s a huge task and responsibility. Don’t be afraid to ask for support from family, friends, and from your community. You can find a lot of information about both diseases, and where to get help, in the references below and by visiting Healthline.

Leslie Vandever is a professional journalist and freelance writer with more than 25 years of experience. She lives in the foothills of Northern California.

References:
• Coping with Dementia: Advice for Caregivers. (n.d.) Parkinson’s Disease Foundation. Retrieved on July 17, 2014 from http://www.pdf.org/en/spring03_dementia
• Caring for Someone with Parkinson’s. (n.d.) Parkinson’s UK. Retrieved on July 17, 2014 from http://www.parkinsons.org.uk/content/caring-someone-parkinsons
• Dementia and Parkinson’s. (n.d.) Parkinson’s UK. Retrieved on July 17, 2014 from http://www.parkinsons.org.uk/dementia
• Parkinson’s Disease and Parkinson’s Dementia. (n.d.) Helpguide.org. Retrieved on July 17, 2014 from http://www.helpguide.org/elder/parkinsons_disease.htm
• Whitlock, C. 5 Caregiving Tips for Lewy Body Dementia. (2013, March 15) National Parkinson Foundation. Retrieved on July 17, 2014 from http://www.parkinson.org/Caregivers/Caregivers—On-The-Blog/March-2013/5-Caregiving-Tips-for-Lewy-Body-Dementia
• Parkinson’s Disease. (2014, May 28) Mayo Clinic. Retrieved on July 17, 2014 from http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/definition/con-20028488
• NINDS Parkinson’s Disease Information Page. (2014, July 14) National Institute of Neurological Disorders and Stroke. National Institutes of Health. Retrieved on July 17, 2014 from http://www.ninds.nih.gov/disorders/parkinsons_disease/parkinsons_disease.htm
• What Causes Parkinson’s? (n.d.) The Michael J. Fox Foundation for Parkinson’s Disease. Retrieved on July 17, 2014 from https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?causes
• What is LBD? (n.d.) Lewy Body Dementia Association, Inc. Retrieved on July 18, 2014 from http://www.lbda.org/category/3437/what-is-lbd.htm