Complications Related To Parkinson’s Can Affect Survival
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology. She is an associate professor of neurology at Tufts Medical School and medical director of the Lahey Clinic Multiple Sclerosis Center in Lexington, Massachusetts.
Parkinson’s is a common neurodegenerative disease, and although it is not fatal, research suggests it may influence life expectancy.
A 2012 study in Archives of Neurology examined the six-year survival of nearly 140,000 Medicare beneficiaries with Parkinson’s disease in the United States. During the six-year period, 64% of the participants with Parkinson’s disease passed away.
The risk of death of those with Parkinson’s was then compared to Medicare beneficiaries who did not have Parkinson’s or any other common diseases, including:
When controlling for variables like age, race, and gender, the six-year risk of death among people with Parkinson’s was found to be nearly four times greater than those Medicare beneficiaries without the disease or other common diseases.
At the same time, the rate of death among those with Parkinson’s disease was similar to those with hip fracture, Alzheimer’s dementia, or a recent heart attackalthough it was higher than those who had been newly diagnosed with either colorectal cancer, stroke, ischemic heart disease, or chronic obstructive pulmonary disease.
Living With Parkinsons Disease
Patients living with PD can take steps to ensure they get quality care from their healthcare team, as well as take good care of themselves.
Staying as active as possible with help from an occupational therapist who can show you how to modify daily activities, eating a healthy and well-balanced diet, and taking medications as prescribed can all help optimize your health and promote well-being. Talking with the doctor about any challenges or concerns can also help you brainstorm solutions to problems or help create a plan to address issues.
Don’t neglect emotional health, as well. Depression and anxiety affect up to half of those living with PD.5
Mood disorders and changes like these can actually worsen symptoms and affect overall health, so proper treatment is crucial. Tell the doctor if youre noticing changes in mood at all, so this can be addressed with treatment, whether its medication, counseling, or both. Spending time with other people friends, family members, activity groups can also help decrease feelings of isolation or loneliness.
The Role Of Dementia And Age
Dementia also plays an important role in survival with Parkinson’s. By the end of the above study, nearly 70% of the population with Parkinson’s had been diagnosed with dementia, and those with dementia had a lower survival rate as compared to those without.
This means that those with dementia were more likely to die during the six-year period than those without dementia. In addition, scientific studies have shown that increasing age is linked to an increased risk of death.
It’s important to remember that how a person’s Parkinson’s disease manifests and progresses is variable, and a person’s neurologist cannot accurately predict individual life expectancy.
There are simply no key signs or symptoms that allow a doctor to perfectly predict longevity. An older age and the presence of dementia are simply associated with an increased risk of dying.
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Average Life Expectancy For Seniors With Parkinsons
On average, a person with Parkinsons disease dies at the age of 81, which is equal to national life expectancy rates. Depending on age and location, overall life expectancy is somewhere between the ages of 78 and 81. However, overall life expectancy rates are skewed a little by the fact that more young people engage in risky behavior that can cause earlier death. Those who manage to survive to the age of 65 actually have a longer life expectancy84 to 86 yearswhich means seniors with Parkinsons have a slightly shorter life span than other seniors, but they still have a fairly normal life span when compared to the general population.
The Reality Of Managing Symptoms
Dr. Benjamin Walter, of the Center for Neuro-Restoration at Cleveland Clinic, said that the average person isnt accustomed to the strict regimen of multiple medications a day thats part of everyday life for people with Parkinsons.
Most people feel burdened just taking an antibiotic, which can be difficult to remember. Now, imagine someone who has Parkinsons the minimal dosing is usually three times a day, Walter said.
He explained that the need to frequently take medication is because it usually only lasts in a persons bloodstream for 90 minutes.
Once the medication gets into the brain, its converted to dopamine and stored in dopamine neurons, which recycles and reuses that medication over and over until it is depleted. Now, its not uncommon to have patients on meds four or five times a day, he said.
Walter stressed that when discussing Parkinsons and off periods, no two people are the same.
Parkinsons is a highly variable disease. Some people will experience different motor symptoms and tremors than others.
For example, some people freeze when they walk, while others dont.
He said the off periods can be terrifying for many people and also cause a different symptom anxiety.
Walter said that its important for those taking care of a person with Parkinsons to understand how dangerous off periods can be.
He stressed the importance of making sure patients get their medications on schedule so that everything is kept in working order.
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Reported Standardised Mortality Ratios From 1935 To 2001
The SMRs or mortality ratios comparing PD cases and controls from 39 studies from 1935 to 2006 are reported in table 1. The SMRs ranged from 1, indicating no differences compared with the general population, to 3.4, indicating more than threefold higher mortality in PD. The time trend of estimates is inconsistent, although there appears to be a decrease in the 1970s, corresponding to the introduction of levodopa trials during that time period .). A geographical trend is not apparent, as the SMRs within each geographical region are as variable as between regions .
Table 1Summary of studies that have reported a standardised mortality ratio, comparing Parkinsons disease patients with a general population
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When To Seek Hospice Care
When you or your loved one have a life expectancy of six months or less, you become eligible for hospice care a type of comfort care provided at the end of life for someone living with end-stage Parkinsons disease. Hospice provides extra support so your loved one can live as comfortably as possible.
If you have experienced a significant decline in your ability to move, speak, or participate in activities of daily living without caregiver assistance, its time to speak with a hospice professional.
Read more: What is hospice care?
Some of the things that determine whether your loved one with end-stage Parkinsons is eligible for hospice include: difficulty breathing, bed bound, unintelligible speech, inability to eat or drink sufficiently, and/or complications including pneumonia or sepsis.
If you live in South Jersey, our nurse care coordinator can answer your questions and decide if your loved one is ready for hospice care. Call us 24/7 at 229-8183.
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Give Yourself Time To Adjust
Over time, youll likely become an expert in Parkinsons disease but right now, youre a newbie. Give yourself time for the diagnosis and all it might mean to sink in. Then, get educated: Ask your doctor for information you can take home and read, find other people with Parkinsons in your community or online to talk to, and browse sites like the National Parkinson Foundation and the Michael J. Fox Foundation for Parkinsons Research.
Want More Practical Articles Like This
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Catching The Early Warning Signs
This disease is usually diagnosed after the age of 60, but some people develop mild symptoms years before that. In the earliest stages of Parkinsons, people usually notice problems with their hands. They might have a difficult time writing or manipulating small items. Others feel as if theyre losing their strength or can no longer move as quickly as they used to. While those symptoms can be caused by many different health conditions, theyre very common among people with Parkinsons. As this disease progresses, people may experience symptoms that impact their quality of life, including muscle tremors, impaired posture and balance, and speech problems.
Mobility limitations and other safety issues in the advanced stages of Parkinsons disease can make caring for aging adults increasingly challenging. Aging in place can present a few unique challenges for older adults. Some only require part-time assistance with exercise or meal preparation, while others are living with serious illnesses and benefit more significantly from receiving live-in care. Mesa, Arizona, Home Care Assistance are leaders in the elderly in-home care industry for good reason. We tailor our care plans based on each seniors individual needs, our caregivers continue to receive updated training in senior care as new developments arise, and we also offer comprehensive care for seniors with Alzheimers, dementia, and Parkinsons.
Minimize Risk At Home
Use the Parkinsons Foundations Home Safety Considerations checklist to ensure your home is safe and easily accessible. Or request a Home Safety Evaluation from your doctor. An occupational therapist can perform an in-home assessment to make your home safer.
You may also want to research medical alert systems. These wearable devices can bring help quickly in an emergency.
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Whats Different About Young
The age of diagnosis matters for a variety of reasons, from probable causes of early cases to symptoms and treatment:
- Genetics. As with any case of Parkinsons disease, the exact cause is usually unknown. That said, The young-onset cases of Parkinsons disease are, on average, a bit more likely to be familial or genetic, says Gregory Pontone, M.D., director of the Johns Hopkins Movement Disorders Psychiatry Clinic.
- Symptoms. In many patients with YOPD, dystonia is an early symptom. People with YOPD also report more dyskinesia . They also tend to exhibit cognitive problems, such as dementia and memory issues, less frequently.
- Progression. Patients with young-onset Parkinsons appear to have a slower progression of the disease over time, says Pontone. They tend to have a milder course, staying functional and cognitively intact for much longer.
- Treatment. Most patients with Parkinsons take the medication levodopa. However, other drugs, such as MAO-B inhibitors, anticholinergics, amantadine, and dopamine receptor agonists, may be used before levodopa.
Length Of Time Seniors With Parkinsons Live After A Diagnosis
Another important statistic to consider is the amount of time a senior lives after the diagnosis. On average, people with Parkinsons die about 16 years after theyre diagnosed or begin to show symptoms. Those who are diagnosed at a very young age, such as around age 30, may live longer periods of up to 40 years with the disease. However, they may end up dying at a slightly younger age than seniors who are diagnosed at an older age. Essentially, those who dont exhibit symptoms until past the age of 65 end up spending less time living with Parkinsons and die at an older age overall.
Mobility limitations and other safety issues in the advanced stages of Parkinsons disease can make caring for seniors increasingly challenging. Aging in place can present a few unique challenges for older adults. Some only require part-time assistance with exercise or meal preparation, while others are living with serious illnesses and benefit more significantly from receiving live-in care. Anchorage, AK, Home Care Assistance are leaders in the elderly in-home care industry for good reason. We tailor our care plans based on each seniors individual needs, our caregivers continue to receive updated training in senior care as new developments arise, and we also offer comprehensive care for seniors with Alzheimers, dementia, and Parkinsons.
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What Makes Pd Hard To Predict
Parkinsonâs comes with two main buckets of possible symptoms. One affects your ability to move and leads to motor issues like tremors and rigid muscles. The other bucket has non-motor symptoms, like pain, loss of smell, and dementia.
You may not get all the symptoms. And you canât predict how bad theyâll be, or how fast theyâll get worse. One person may have slight tremors but severe dementia. Another might have major tremors but no issues with thinking or memory. And someone else may have severe symptoms all around.
On top of that, the drugs that treat Parkinsonâs work better for some people than others. All that adds up to a disease thatâs very hard to predict.
How Can Hospice Help Your Loved One In The Final Stages Of Parkinsons Disease
Hospice care is an extra layer of support to help you care for your loved one with end-stage Parkinsons disease. It is a special kind of care that provides comfort, support, and dignity at the end of life.
The comprehensive program focuses on physical, emotional, and spiritual quality of life through the help of a team of experts. The team includes a board-certified physician, nurse, social worker, certified home health aide , spiritual support counselor, and volunteer.
The nurse will explain the prognosis and what to expect in the upcoming days or weeks. They will also monitor pain and other symptoms. The CHHA helps with personal care needs like bathing and changing bed linens. The social worker helps address social, emotional and practical challenges including complex and inter-related needs. The spiritual support counselor helps explore spiritual concerns.
Most importantly, the hospice team will be there for you during this difficult time, bringing you peace of mind. The team is on call 24 hours a day even at 2:00 am.
Hospice is about making your final months and weeks as good as possible. This means focusing on what really matters to you.
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How Do I Prevent Falls From Common Hazards
- Floors: Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its usual place.
- Bathroom: Install grab bars and non-skid tape in the tub or shower. Use non-skid bath mats on the floor or install wall-to-wall carpeting.
- Lighting: Make sure halls, stairways, and entrances are well-lit. Install a night light in your bathroom or hallway and staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
- Kitchen: Install non-skid rubber mats near the sink and stove. Clean spills immediately.
- Stairs: Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it might be helpful to arrange most of your activities on the lower level to reduce the number of times you must climb the stairs.
- Entrances and doorways: Install metal handles on the walls adjacent to the doorknobs of all doors to make it more secure as you travel through the doorway.
Is There A Test To Diagnose Pd Dementia
There is no single test for PDD. The diagnosis is made clinically. If you or someone you spend time with notices cognitive changes, it is important to discuss them with your care team. If you dont have a care team in place, its important to find a specialist or physician familiar with dementia or geriatric medicine. Call the Parkinson’s Foundation Helpline 1-800-4PD-INFO for a referral.
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What Are The Symptoms Of Parkinsons Disease
Symptoms of Parkinsons disease and the rate of decline vary widely from person to person. The most common symptoms include:
Other symptoms include:
- Speech/vocal changes: Speech may be quick, become slurred or be soft in tone. You may hesitate before speaking. The pitch of your voice may become unchanged .
- Handwriting changes: You handwriting may become smaller and more difficult to read.
- Depression and anxiety.
- Sleeping disturbances including disrupted sleep, acting out your dreams, and restless leg syndrome.
- Pain, lack of interest , fatigue, change in weight, vision changes.
- Low blood pressure.
Can Parkinsons Disease Be Prevented
Unfortunately, no. Parkinsons disease is long-term disease that worsens over time. Although there is no way to prevent or cure the disease , medications may significantly relieve your symptoms. In some patients especially those with later-stage disease, surgery to improve symptoms may be an option.
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If You Live In South Jersey And Have Questions About The Final Stages Of Parkinsons Disease Or Hospice Care For Your Loved One Please Call Samaritan At 229
Samaritan is a member of the National Partnership for Healthcare and Hospice Innovation, a network of not-for-profit hospice and palliative providers across the country. If you know someone outside of our service area who is living with advanced illness and can benefit from hospice or palliative care, please call 1 -GET-NPHI for a referral to a not-for-profit provider in your area.