Caring For Someone With Parkinsons
Practice patience and understanding when dealing with Parkinsons. You may be very frustrated and challenged as a caregiver, but those with Parkinsons are just as frustrated. Their physical and mental conditions can be debilitating, depressing, and humiliating.
Diet and nutrition can have a huge impact on the health and comfort of a Parkinson patient. Eating well, getting more rest, sleeping well, fresh air, and exercise can make a difference. Getting the right medication and complementary therapies is also important.
As Parkinsons impacts a patients motor skills, modifications to the living environment may have to be made to accommodate wheelchairs and limited mobility issues. Professional in-home assistance for Parkinsons can allow Parkinson patients to remain independent and can enhance quality of life.
Most importantly, seek help and support from family, friends, and caregiving support groups. Take advantage of the resources in your community. Shouldering all the burden can take a toll on a caregiver.
Take care of yourself or you wont be able to take care of your loved one. Follow the preventive advice provided above for yourself as well, and take deep breaths!
Resources
What Are The Complications Of Parkinson Disease
Parkinson disease causes physical symptoms at first. Problems with cognitive function, including forgetfulness and trouble with concentration, may arise later. As the disease gets worse with time, many people develop dementia. This can cause profound memory loss and makes it hard to maintain relationships.
Parkinson disease dementia can cause problems with:
- Speaking and communicating with others
- Problem solving
- Forgetfulness
- Paying attention
If you have Parkinson disease and dementia, in time, you likely won’t be able to live by yourself. Dementia affects your ability to care of yourself, even if you can still physically do daily tasks.
Experts don’t understand how or why dementia often occurs with Parkinson disease. Its clear, though, that dementia and problems with cognitive function are linked to changes in the brain that cause problems with movement. As with Parkinson disease, dementia occurs when nerve cells degenerate, leading to chemical changes in the brain. Parkinson disease dementia may be treated with medicines also used to treat Alzheimer’s disease, another type of dementia.
How Is Parkinson Disease Treated
Parkinson disease can’t be cured. But there are different therapies that can help control symptoms. Many of the medicines used to treat Parkinson disease help to offset the loss of the chemical dopamine in the brain. Most of these medicines help manage symptoms quite successfully.
A procedure called deep brain stimulation may also be used to treat Parkinson disease. It sends electrical impulses into the brain to help control tremors and twitching movements. Some people may need surgery to manage Parkinson disease symptoms. Surgery may involve destroying small areas of brain tissue responsible for the symptoms. However, these surgeries are rarely done since deep brain stimulation is now available.
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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.
Dementia And Parkinsons Disease
The most recognizable symptom of Parkinsons disease is muscle rigidity that makes walking and mobility difficult. Tremors are also seen frequently in people with PD, and cognitive issues can develop later as the disease progresses. As symptoms begin to worsen, changes in memory, concentration, and focus may also occur. Dementia often appears 10-15 years after diagnosis as a seniors cognitive function declines. This memory loss can cause problems with the ability to communicate verbally, inhibit problem solving skills and abstract reasoning, reduce your loved ones attention span, and hinder his or her ability to relate to other people.
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What Causes Lewy Body Dementia
The causes of LBD are not yet well understood, but research is ongoing in this area. There are probably multiple factors involved, including genetic and environmental risk factors that combine with natural aging processes to make someone susceptible to LBD.
For more information, visit www.lbda.org.
Modified with permission from the Lewy Body Dementia Association
To learn more about motor symptoms related to Parkinsons, visit here.
To learn more about non-motor symptoms related to Parkinsons, visit here.
Parkinsons Doesnt Always Cause Dementia
While cognitive decline is common in both Alzheimers and Parkinsons, it is less likely to occur in Parkinsons patients. According to studies, only half of those with Parkinsons develop cognitive difficulties. This can range from mild forgetfulness to full-blown dementia.
When dementia does manifest itself with Parkinson, it occurs in the subcortical area of the brain. Alzheimers dementia occurs in the cortical area of the brain. As a result of this, the clinical symptoms of these two dementias can be somewhat different.
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Treatments For Parkinsons Disease Dementia And Dementia With Lewy Bodies
Treatments for DLB are similar to PDD and are aimed at symptom control. The motor symptoms of slowness, stiffness and walking difficulties can be treated with Levodopa. However, Levodopa can cause or exacerbate hallucinations, making it difficult to use it as a treatment for patients who have or are at risk of having hallucinations. Sometimes, clinicians will need to treat the hallucinations more aggressively in order for a patient to tolerate Levodopa given to help the motor symptoms. On the flipside, anti-psychotic medications to control hallucinations can worsen motor symptoms, so treating all the symptoms of LBD simultaneously can be a tricky balancing act.
Parkinsons Dementia Vs Alzheimers Dementia
According to experts, Parkinsons dementia can cause impaired physical activity and impacts motor skills. Two neurotransmitters called dopamine and serotonin tend to be damaged by Parkinsons.
In addition to causing issues with movement and coordination, this form of dementia can also cause a slower thought process and memory problems. This is usually less pronounced however, until the later stages of the disease.
With Alzheimers, two types of proteins in the brain, tangles and plaques , accumulate and kill brain cells. This Alzheimers-induced dementia affects memory, clear thinking, language skills, and orientation. It reduces comprehension, learning capacity, and judgement. Storing new information and memory retrieval are impacted more than motor skills.
Distinguishing between these neurodegenerative conditions is important to determine the best treatment approach. Medications for one of condition might create problems when given to a patient with the other condition.
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Can You Have Both Parkinsons And Alzheimers
People who already have Parkinsons disease and later develop signs of dementia are diagnosed with Parkinsons dementia.6 However, if you first have Alzheimers disease and develop signs of movement difficulties, you can also have a diagnosis of Parkinsons disease.
Tell us about your experience in the comments below, or with the community.
Is Dementia A Symptom Of Both
One of the biggest similarities between PD and LBD is dementia. Some studies have found that approximately 78 percent of PD patients will eventually develop dementia.4 More specifically, almost half of Parkinsons patients will develop a certain type of dementia called Parkinsons Dementia, usually 10-15 years after their initial PD diagnosis.3 People with Parkinsons Dementia commonly experience poor memory and concentration, slowed thinking, confusion, depression, emotional changes, delusions, and visual hallucinations.
Parkinsons dementia is different than LBD, mainly in which symptoms occur first . Patients with Parkinsons Dementia will first show Parkinsons motor symptoms, followed by dementia many years after diagnosis. Conversely, LBD patients will first show dementia symptoms and may show motor symptoms later.3
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Behaviors Seen In Parkinsons Disease Dementia
As dementia progresses, managing disorientation, confusion, agitation, and impulsivity can be a key component of care.
Some patients experience hallucinations or delusions as a complication of Parkinsons disease. These may be frightening and debilitating. Approximately 50 percent of those with the disease may experience them.
The best thing to do when giving care to someone experiencing hallucinations or delusions from Parkinsons disease dementia is to keep them calm and reduce their stress.
Take note of their symptoms and what they were doing before they exhibited signs of hallucinating and then let their doctor know.
This element of the disease can be particularly challenging for caregivers. Patients may become unable to care for themselves or be left alone.
Some ways to make caregiving easier include:
- sticking to a normal routine whenever possible
- being extra comforting after any medical procedures
- limiting distractions
- using curtains, nightlights, and clocks to help stick to a regular sleep schedule
- remembering that the behaviors are a factor of the disease and not the person
Managing The Effects Of Parkinsons Disease
Currently there is no cure for Parkinsons disease but UK and international research is ongoing.
With Parkinsons disease the interventions are focused on support, management of the changes, working with the person and their family to ensure they can live as well as possible with the condition. The physical effects of Parkinsons disease can be managed by:
- adapting the home environment so any trip hazards are removed and risks minimised
- a referral to Speech and Language Therapy if there are speech or swallowing problems
- a referral to a physiotherapist if there are movement issues
- a referral to an occupational therapist for aids and devices that may help around the house
If the person with Parkinsons has significant communication or cognitive issues they can be reduced by:
- reviewing the medication given for Parkinsons as this may be worsening the cognitive symptoms
- speaking slowly and clearly if understanding and thought processes are slowed
- reducing distractions
- giving time for communication it may take longer to respond
- asking questions to narrow down the answer, give choices or use yes/no cards or picture cards the person may have word finding difficulties as well as needing longer to respond
- using a mobile phone, tablet or electronic communication aid
- avoid unfamiliar or noisy places as they can cause distress
- providing a routine and activities that the person enjoys and feels comfortable with
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Epidemiology Of Dementia And Parkinson’s Disease
Dementia and PD are both diagnosed frequently and increase mortality . Perhaps dementia is perceived more so as a memory problem and a disease of old age, but the incidence of dementia and PD in younger age is similar. In the Netherlands, for dementia, the incidence per 1,000 person-years is 0.4 among those aged 6064 , and for PD, it is 0.3 . Dementia incidence patterns, however, show a much steeper increase with age; mounting to 27 per 1,000 person-years for those 85 and over, compared to 4 for PD over 85. In view of similar mortality , therefore, the prevalence of dementia in the general population is much higher than prevalence of PD . However, adjusted for age and other factors, 6-year mortality in PD is higher than in Alzheimer’s dementia . Age adjustment is relevant also as it shows that comorbid disease may be equally prevalent for Alzheimer’sa main type of dementiaand PD across the same age groups .
See A Doctor If Youre Noticing Symptoms Beyond Parkinsons
Sometimes the mood or memory changes a person experiences cannot entirely be explained just by Parkinsons. If this is the case, the caregiver should explore other diagnoses, because if something cannot be explained by Parkinsons, theres certainly a risk of it being dementia, Oguh said.
She added that some signs to look for include increased memory and behavioral problems, like mood swings, anxiety or depression. Psychiatric behaviors, like hallucinations, delusions or paranoia, cannot just be explained by Parkinsons, and are more likely to be caused by a form of dementia like Lewy body dementia.
Oguh urged caregivers to be aware of changing symptoms like these.
I think sometimes family members are able to realize sooner than the patient, Oguh said. Often the patient might lack insight as to what is happening. I would encourage family members to seek expert opinion and treatment options.
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Lewy Bodies: More Than Lbd
LBD is characterized by the presence of Lewy bodies in the nerve cells of the brain, meaning that LBD patients have Lewy bodies in the brain.2 However, Lewy bodies are also common with other conditions, such as Alzheimer’s and Parkinsons disease. In fact, most people with PD also have Lewy bodies in their brain. However, even if they have Lewy bodies, not all Parkinsons patients will also develop LBD.2
Other Causes Of Dementia
Dementia isnt the only reason for someone with Parkinsons to have dementia-like symptoms. They could also be caused by mental disorders, treatable conditions, or medication side effects.
Common mental disorders in Parkinsons disease could also cause dementia-like symptoms, including:
- Depression sadness, tearfulness, fatigue, withdrawal, loss of interest in activities once enjoyed, sleeping too much or too little, weight gain or loss
- Anxiety excessive worry or fear that disrupts everyday activities or relationships, restlessness, extreme fatigue, muscle tension, sleeping problems
- Psychosis inability to think realistically, hallucinations, delusions , paranoia , and problems with thinking clearly
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How Are Parkinsons And Dementia Related
Parkinsons and dementia are two of the most common degenerative neurological conditions in this country, affecting many thousands of people. However, there are a lot of myths and misunderstandings about the illnesses.
If you have been told that you have either condition, the future may seem bleak and bewildering. Whether youve found this blog having been recently been diagnosed, or are worried about a loved one, then read on, hopefully, we can help you to gain some understanding.
Lewy Body Dementia: A Common Yet Underdiagnosed Dementia
While its not a household word yet, Lewy body dementia is not a rare disease. It affects an estimated 1.4 million individuals and their families in the United States. Because LBD symptoms can closely resemble other more commonly known disorders like Alzheimers disease and Parkinsons, it is often underdiagnosed or misdiagnosed. In fact, many doctors or other medical professionals still are not familiar with LBD.
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What Is Parkinsons Disease Dementia
Parkinsons disease dementia has symptoms similar to those found in Lewy body dementia so it can sometimes be tough to diagnose.
But according to the Alzheimers Association, someone has Parkinsons disease dementia if they were originally diagnosed with Parkinsons based on movement symptoms and their dementia symptoms didnt appear until a year or more later.
Things You Should Know About The Link Between Parkinsons And Dementia
Both Parkinsons disease and dementia were ravaging the brain and behavior of actor Robin Williams before his death, but at the time, he didnt realize he had the latter.
Despite the fact that the signs of this combination can be confusing, the double diagnosis of Parkinsons and dementia impacts a large number of people. Of the one million people who have Parkinsons in the U.S., 50 to 80 percent may have dementiaeither as a result of Parkinsons pathology, or separately.
Robin Williams widow, Susan, wrote an editorial published in Neurology that was addressed to neurologists after his death. In it, she shared what it was like seeing her husband experience both Parkinsons disease and Lewy body dementia firsthand.
My hope is that it will help you understand your patients along with their spouses and caregivers a little more, Susan wrote.
Williams was first diagnosed with Parkinsons disease, which at first seemed to provide some answers for his out-of-character symptoms.
But it wasnt until after his death that an autopsy revealed he had been in the later stages of Lewy body dementiaa common form of dementia characterized by deposits of Lewy body proteins in the brain, which can impact physical movement, mood, memory and behavior.
I will never know the true depth of his suffering, nor just how hard he was fighting, Susan wrote. But from where I stood, I saw the bravest man in the world playing the hardest role of his life.
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What Muddles Memory
Parkinson’s is a neurodegenerative condition, so it’s not surprising that memory loss is often part of it. The disease is associated with a decline in acetylcholine, a neurotransmitter that’s important for memory, Liang explains. In patients who have more serious dementia, the buildup of alpha-synuclein proteins in areas of the brain that are important for memory, thinking or language is likely to blame, says Michael Okun, M.D., national medical adviser to the Parkinson’s Foundation and executive director of the Norman Fixel Institute for Neurological Diseases at University of Florida Health.
Research confirms that alpha-synuclein plays a major role, but tau and amyloid beta may also be factors in some patients. A 2019 review of studies, published in the Journal of Neurology, Neurosurgery, & Psychiatry, found that a significant number of deceased Parkinson’s patients who suffered from dementia also had tau and amyloid-beta buildup in their brains.
It’s worth noting that not everyone with Parkinson’s faces an equal risk of memory trouble. Those who develop cognitive impairment tend to be older and living with the disease for longer. Patients who have the most severe motor problems and require high doses of dopamine-promoting medication are also at greatest risk, according to research published in Movement Disorders.
What Happens In Pdd
People with PDD may have trouble focusing, remembering things or making sound judgments. They may develop depression, anxiety or irritability. They may also hallucinate and see people, objects or animals that are not there. Sleep disturbances are common in PDD and can include difficulties with sleep/wake cycle or REM behavior disorder, which involves acting out dreams.
PDD is a disease that changes with time. A person with PDD can live many years with the disease. Research suggests that a person with PDD may live an average of 57 years with the disease, although this can vary from person to person.
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What Is The Best Way To Communicate With A Person With Pdd
PD-related mood and motor changes can impact communication; cognitive changes and Parkinsons disease dementia can further these difficulties.
- It is not usually helpful to try to reason or argue with someone experiencing a hallucination or delusion. Stay calm and be patient. If the person is frightened by the hallucination or delusion, try to redirect their attention to something else.
- You may find acknowledging what the person is seeing, even if you do not see it, can reduce stress.
- Speak slowly and at eye level. Communicate in simple sentences.
- Ask one question at a time and wait for an answer.
- Limit distractions. Turn off the TV or radio before asking a person with PDD to do something.
- Consider causes behind disruptive behavior: the person may be hungry, thirsty, tired, in pain, frustrated, lonely or bored.
- If the person is stuck on an idea, try agreeing with them, then changing the subject.
- Its OK to use humor to diffuse stressful situations but avoid negative humor or sarcasm these can be misunderstood.
Page reviewed by Dr. Jori Fleisher, MSCE, Assistant Professor, Department of Neurological Sciences at Rush University Medical Center, a Parkinsons Foundation Center of Excellence.
Core Features Of Probable Pdd
The primary defining feature of PDD is dementia that develops in the setting of established PD . Therefore, the critical first step in the diagnosis process is to identify idiopathic PD, prior to the development of dementia. For a diagnosis of PDD, two core features must be present: a diagnosis of PD according to the Queen Square Brain Bank criteria and PD developed prior to the onset of dementia .
In this case, a dementia syndrome is defined as impairment in at least two cognitive domains and cognitive deficiency severe enough to impair daily life that must be independent of impairment because of PD motor symptoms. The MDS Task Force recommended that the Mini-Mental State Examination may be useful as a screening instrument for identifying cognitive impairment in PDD patients the MMSE is a simple and universally applied scale that can be easily and quickly performed in the clinical setting . An MMSE score of 25 or below is proposed as the cut-off for identifying clinically significant cognitive impairment in this population .
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Dementia With Lewy Bodies And Parkinson Disease Dementia
, MD, PhD, Department of Neurology, University of Mississippi Medical Center
Dementia with Lewy bodiesParkinson disease dementia
Dementia is chronic, global, usually irreversible deterioration of cognition.
Dementia with Lewy bodies is the 3rd most common dementia. Age of onset is typically > 60.
Lewy bodies are spherical, eosinophilic, neuronal cytoplasmic inclusions composed of aggregates of alpha-synuclein, a synaptic protein. They occur in the cortex of some patients who have dementia with Lewy bodies. Neurotransmitter levels and neuronal pathways between the striatum and the neocortex are abnormal.
Lewy bodies also occur in the substantia nigra of patients with Parkinson disease, and dementia may develop late in the disease. About 40% of patients with Parkinson disease develop Parkinson disease dementia, usually after age 70 and about 10 to 15 years after Parkinson disease has been diagnosed.
Because Lewy bodies occur in dementia with Lewy bodies and in Parkinson disease dementia, some experts think that the two disorders may be part of a more generalized synucleinopathy affecting the central and peripheral nervous systems. Lewy bodies sometimes occur in patients with Alzheimer disease, and patients with dementia with Lewy bodies may have neuritic plaques and neurofibrillary tangles. Dementia with Lewy bodies, Parkinson disease, and Alzheimer disease overlap considerably. Further research is needed to clarify the relationships among them.
Coping With Dietary Problems
Many people with Parkinsons experience various eating and dietary problems, such as constipation, chewing and swallowing difficulties, and upset stomach. The following tips can help you minimize the symptoms.
If you suffer from constipation Drink lots of water and eat fiber-rich foods, including beans, brown rice, whole grains, and fruit.
If you have trouble chewing or swallowing food Cut foods into smaller portions to avoid choking and to encourage digestion, and remain upright for 30 minutes after eating.
If youre struggling with fatigueLimit the amount of sugar youre eating. Also avoid alcohol and caffeine, especially before bed, as they can reduce the quality of your sleep.
If you take levodopa Dont eat meat or other protein-rich foods for at least 30-60 minutes after taking levodopa, as protein blocks your bodys ability to absorb the medication.
If your medication gives you an upset stomach Take your medication with a full glass of water and a small non-protein based snack, such as a piece of toast or fruit.
Some Parkinsons disease medications need to be taken promptly at specified times before or after eating, so it can also help to establish a regular routine for meal and medication times.
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Advice For Carers Family And Friends
Living with or caring for someone with Parkinsons disease dementia can be challenging. Sometimes help and support will be relied on heavily but there will be times when it will be better to step back and allow the person with dementia to do things for themselves. This balance will be difficult to judge at first, but with time and patience new routines and approaches to day-to-day living can be established.
It is important to encourage, stimulate and help the person with dementia, but remember too that rest is important.
What Is Needed For A Parkinson’s Disease Dementia Diagnosis
There is no definitive medical test that confirms cognitive decline or dementia in Parkinson’s disease. The most accurate way to measure cognitive decline is through neuropsychological testing.
- The testing involves answering questions and performing tasks that have been carefully designed for this purpose. It is carried out by a specialist in this kind of testing.
- Neuropsychological testing addresses the individual’s appearance, mood, anxiety level, and experience of delusions or hallucinations.
- It assesses cognitive abilities such as memory, attention, orientation to time and place, use of language, and abilities to carry out various tasks and follow instructions.
- Reasoning, abstract thinking, and problem solving are tested.
- Neuropsychological testing gives a more accurate diagnosis of the problems and thus can help in treatment planning.
- The tests are repeated periodically to see how well treatment is working and check for new problems.
Imaging studies: Generally, brain scans such as CT scan and MRI are of little use in diagnosing dementia in people with Parkinson’s disease. Positron emission tomographic scan may help distinguish dementia from depression and similar conditions in Parkinson’s disease.
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