Managing Care In Late Stages
, March 3, 2017
What to expect in the late stages of Parkinsons disease and the challenges of caring with those difficulties and needs. Tips for helping someone overcome freezing, accomplishing activities of daily living as long as possible, managing medications and swallowing issues, and ways to minimize caregiver stress.
How Can I Support Someone With Parkinson’s Towards The End Of Life
In the advanced stages of Parkinsons, your patients care needs may be more complex and require careful planning along with the patient, their family and other health and social care professionals involved.
Palliative care should be holistic, considering the whole person to support the personal, social, psychological and spiritual needs of your patient and their family. It should give your patient some control and choice over areas such as treatment options and where they will be cared for, as well as providing advice and support to all the people involved in their care.
Palliative care in Parkinsons may be supported by a number of professionals, including a Parkinsons nurse specialist, local hospice or specialist palliative care team, physiotherapist, occupational therapist, speech and language therapist or dietitian. Many people with Parkinson’s also find complementary therapies beneficial.
It is important that you find out whether the person has a care plan in place regarding their preferences for how the issues surrounding advanced Parkinsons should be managed. This could include legal documentation such as a Lasting Power of Attorney and an advance care plan. Advance care plans include information on what the persons wishes and preferences are for their care in the future. They may include decisions on any treatments the person does not want to have in the future this is called an Advance Directive, Advance Decision to Refuse Treatment or Living Will.
What Are The Different Stages Of Parkinsons Disease
Each person with Parkinsons disease experiences symptoms in in their own unique way. Not everyone experiences all symptoms of Parkinsons disease. You may not experience symptoms in the same order as others. Some people may have mild symptoms others may have intense symptoms. How quickly symptoms worsen also varies from individual to individual and is difficult to impossible to predict at the outset.
In general, the disease progresses from early stage to mid-stage to mid-late-stage to advanced stage. This is what typically occurs during each of these stages:
Early stage
Early symptoms of Parkinsons disease are usually mild and typically occur slowly and do not interfere with daily activities. Sometimes early symptoms are not easy to detect or you may think early symptoms are simply normal signs of aging. You may have fatigue or a general sense of uneasiness. You may feel a slight tremor or have difficulty standing.
Often, a family member or friend notices some of the subtle signs before you do. They may notice things like body stiffness or lack of normal movement slow or small handwriting, lack of expression in your face, or difficulty getting out of a chair.
Mid stage
Mid-late stage
Standing and walking are becoming more difficult and may require assistance with a walker. You may need full time help to continue to live at home.
Advanced stage
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What Are The Stages Of Parkinson’s
Healthcare professionals often refer to different ‘stages’ of Parkinson’s. These include:
- Early or diagnosis stage. The time when someone is first experiencing symptoms, being diagnosed and then coming to terms with this.
- Maintenance stage. When symptoms are controlled, perhaps by medication.
- Advanced stage. Often called the ‘complex phase’.
- Palliative stage. Providing relief from the symptoms, stress and pain of the condition.
Everyone with Parkinson’s is different and symptoms will progress at a different rate. It’s nothing to do with your age or how long you’ve had Parkinson’s.
Delphi Criteria For Apd
Delphi criteria for APD were developed as a staging tool to help clinicians identify patients with APD using consistent characterization, which therefore will assist in optimizing patient treatment care . The Delphi versus physician judgment comparison was a pre-defined end point. Patients were first assessed by the investigator using their own physicians judgment and then assessed using the Delphi criteria. Independent assessments were not possible as the outcomes were determined by the same investigator. In this study, patients were assessed by movement disorder specialists using 11 indicators of suspected APD identified through a Delphi consensus methodology by an international movement disorder specialists expert group. Patients having any of the indicators were identified as having APD . As APD was determined by individual physician judgment, no comparison to other scales was conducted. Patients with ongoing DAT were not assessed using the Delphi criteria as the comparison was considered invalid as they would usually experience better clinical outcomes.
Table 1 Delphi criteria for APD
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What Are The Early Warning Signs Of Parkinson’s Disease
Parkinsons warning signs can be motor symptoms like slow movements, tremors or stiffness. However, they can also be non-motor symptoms. Many of the possible non-motor symptoms can appear years or even decades ahead of motor symptoms. However, non-motor symptoms can also be vague, making it difficult to connect them to Parkinson’s disease.
Non-motor symptoms that might be early warning signs include:
How Is Parkinsons Disease Dementia Diagnosed
No single test can diagnose Parkinsons disease dementia. Instead, doctors rely on a series or combination of tests and indicators.
Your neurologist will likely diagnose you with Parkinsons and then track your progression. They may monitor you for signs of dementia. As you get older, your risk for Parkinsons dementia increases.
Your doctor is more likely to conduct regular testing to monitor your cognitive functions, memory recall, and mental health.
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Parkinsons Disease: Causes Symptoms And Treatments
Parkinsons disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination.
Symptoms usually begin gradually and worsen over time. As the disease progresses, people may have difficulty walking and talking. They may also have mental and behavioral changes, sleep problems, depression, memory difficulties, and fatigue.
While virtually anyone could be at risk for developing Parkinsons, some research studies suggest this disease affects more men than women. Its unclear why, but studies are underway to understand factors that may increase a persons risk. One clear risk is age: Although most people with Parkinsons first develop the disease after age 60, about 5% to 10% experience onset before the age of 50. Early-onset forms of Parkinsons are often, but not always, inherited, and some forms have been linked to specific gene mutations.
Medicines For Parkinsons Disease
Medicines can help treat the symptoms of Parkinsons by:
- Increasing the level of dopamine in the brain
- Having an effect on other brain chemicals, such as neurotransmitters, which transfer information between brain cells
- Helping control non-movement symptoms
The main therapy for Parkinsons is levodopa. Nerve cells use levodopa to make dopamine to replenish the brains dwindling supply. Usually, people take levodopa along with another medication called carbidopa. Carbidopa prevents or reduces some of the side effects of levodopa therapy such as nausea, vomiting, low blood pressure, and restlessness and reduces the amount of levodopa needed to improve symptoms.
People living with Parkinsons disease should never stop taking levodopa without telling their doctor. Suddenly stopping the drug may have serious side effects, like being unable to move or having difficulty breathing.
The doctor may prescribe other medicines to treat Parkinsons symptoms, including:
- Dopamine agonists to stimulate the production of dopamine in the brain
- Enzyme inhibitors to increase the amount of dopamine by slowing down the enzymes that break down dopamine in the brain
- Amantadine to help reduce involuntary movements
- Anticholinergic drugs to reduce tremors and muscle rigidity
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How Does This Condition Affect My Body
Parkinsons disease causes a specific area of your brain, the basal ganglia, to deteriorate. As this area deteriorates, you lose the abilities those areas once controlled. Researchers have uncovered that Parkinsons disease causes a major shift in your brain chemistry.
Under normal circumstances, your brain uses chemicals known as neurotransmitters to control how your brain cells communicate with each other. When you have Parkinsons disease, you dont have enough dopamine, one of the most important neurotransmitters.
When your brain sends activation signals that tell your muscles to move, it fine-tunes your movements using cells that require dopamine. Thats why lack of dopamine causes the slowed movements and tremors symptoms of Parkinson’s disease.
As Parkinson’s disease progresses, the symptoms expand and intensify. Later stages of the disease often affect how your brain functions, causing dementia-like symptoms and depression.
Caregiver Burden And Questionnaire Assessment
The mean ZBI score shows a tendency to be lower in LCIG group compared to CSAI or CU group, even if no statistically significant difference was found among groups . The boxplot of the ZBI Score showed that LCIG and CU populations have a very similar distribution . The CSAI ZBI boxplot distribution is slightly wider but not statistically different . The aggregated results on ZBI scores never/rarely vs. sometimes/quite frequently/nearly always did not show a significant difference between groups for each question, except for the question number 6, regarding the negative influence of the assistance on the relationship with other relatives or friends in this case, a difference was found between LCIG and CSAI . The following variables were correlated with the ZBI score: caregivers change in capability to perform family duties and leisure activities,caregivers change in work,need of professional assistance,patients judgment on QoL, and caregivers judgment on QoL.18 The analysis of the distribution of these significant associations is described in Figure 2A and B. The UPDRS-IV item 39 and the H& Y stage did not show any association with the ZBI score .
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Figure 1 Frequency of symptoms reported by caregivers and kind of mood change in each group. |
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Table 3 Aggregated Results for ZBI Scores in the Three Groups of Treatment. The Total Percentage in Each Group Were Computed Excluding the Missing Data |
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What Causes Parkinson Disease
Parkinson disease arises from decreased dopamine production in the brain. The absence of dopamine makes it hard for the brain to coordinate muscle movements. Low dopamine also contributes to mood and cognitive problems later in the course of the disease. Experts don’t know what triggers the development of Parkinson disease most of the time. Early onset Parkinson disease is often inherited and is the result of certain gene defects.
What To Do With Deep Brain Stimulation At The End Of Life
Deep brain stimulation uses an Implantable Pulse Generator, usually placed in the infraclavicular area, connected to leads within the brain. There is a remote programmer, and also a charging unit in the case of a rechargeable device, which are given to the patient and their carer. It improves dyskinesias and also has a levodopa sparing effect.37
Deactivation of DBS may lead to increased symptom burden as mentioned in the section above and so awareness of features of PHS should be considered if there is failure at the end of life. Supportive treatment should be given if possible,38 and anticipation of symptoms of distress from rigidity and fever.
After death, deactivation of the device with the patients handheld programmer is required before removing the pulse generator and battery in the case of a cremation.
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What Tests Will Be Done To Diagnose This Condition
When healthcare providers suspect Parkinsons disease or need to rule out other conditions, various imaging and diagnostic tests are possible. These include:
New lab tests are possible
Researchers have found possible ways to test for possible indicators or Parkinsons disease. Both of these new tests involve the alpha-synuclein protein but test for it in new, unusual ways. While these tests cant tell you what conditions you have because of misfolded alpha-synuclein proteins, that information can still help your provider make a diagnosis.
The two tests use the following methods.
- Spinal tap. One of these tests looks for misfolded alpha-synuclein proteins in cerebrospinal fluid, which is the fluid that surrounds your brain and spinal cord. This test involves a spinal tap , where a healthcare provider inserts a needle into your spinal canal to collect some cerebrospinal fluid for testing.
- Skin biopsy. Another possible test involves a biopsy of surface nerve tissue. A biopsy includes collecting a small sample of your skin, including the nerves in the skin. The samples come from a spot on your back and two spots on your leg. Analyzing the samples can help determine if your alpha-synuclein has a certain kind of malfunction that could increase the risk of developing Parkinsons disease.
How Do I Take Care Of Myself
If you have Parkinsons disease, the best thing you can do is follow the guidance of your healthcare provider on how to take care of yourself.
- Take your medication as prescribed. Taking your medications can make a huge difference in the symptoms of Parkinson’s disease. You should take your medications as prescribed and talk to your provider if you notice side effects or start to feel like your medications aren’t as effective.
- See your provider as recommended. Your healthcare provider will set up a schedule for you to see them. These visits are especially important to help with managing your conditions and finding the right medications and dosages.
- Dont ignore or avoid symptoms. Parkinsons disease can cause a wide range of symptoms, many of which are treatable by treating the condition or the symptoms themselves. Treatment can make a major difference in keeping symptoms from having worse effects.
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What Causes Parkinsons Disease
Parkinsons disease causes are still unknown. However, there is a vast amount of research directed at getting answers to its origin, treatment and prevention.
Parkinsons has been linked to declining levels of dopamine, an important brain chemical. Dopamine is a neurotransmitter. It plays a role in controlling movement and coordination. Parkinsons also causes the nerve endings to die on another neurotransmitter called norepinephrine. Norepinephrine controls automatic functions of the body, which contributes to Parkinsons symptoms such as fatigue, constipation and blood pressure changes .
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What Causes The Condition
Although there are several recognized risk factors for Parkinsons disease, such as exposure to pesticides, for now, the only confirmed causes of Parkinsons disease are genetic. When Parkinsons disease isnt genetic, experts classify it as idiopathic . That means they dont know exactly why it happens.
Many conditions look like Parkinson’s disease but are instead parkinsonism from a specific cause like some psychiatric medications.
Familial Parkinsons disease
Parkinsons disease can have a familial cause, which means you can inherit it from one or both of your parents. However, this only makes up about 10% of all cases.
Experts have linked at least seven different genes to Parkinson’s disease. They’ve linked three of those to early-onset of the condition . Some genetic mutations also cause unique, distinguishing features.
Idiopathic Parkinsons disease
Experts believe idiopathic Parkinsons disease happens because of problems with how your body uses a protein called -synuclein . Proteins are chemical molecules that have a very specific shape. When some proteins dont have the correct shape a problem known as protein misfolding your body cant use them and can’t break them down.
With nowhere to go, the proteins build up in various places or in certain cells . The buildup of these Lewy bodies causes toxic effects and cell damage.
Induced Parkinsonism
The possible causes are:
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Symptoms Of Parkinsons Disease
Parkinsons has four main symptoms:
- Tremor in hands, arms, legs, jaw, or head
- Muscle stiffness, where muscle remains contracted for a long time
- Slowness of movement
- Impaired balance and coordination, sometimes leading to falls
Other symptoms may include:
The symptoms of Parkinsons and the rate of progression differ among individuals. Early symptoms of this disease are subtle and occur gradually. For example, people may feel mild tremors or have difficulty getting out of a chair. They may notice that they speak too softly, or that their handwriting is slow and looks cramped or small. Friends or family members may be the first to notice changes in someone with early Parkinsons. They may see that the persons face lacks expression and animation, or that the person does not move an arm or leg normally.
People with Parkinson’s disease often develop a parkinsonian gait that includes a tendency to lean forward take small, quick steps and reduce swinging their arms. They also may have trouble initiating or continuing movement.
Symptoms often begin on one side of the body or even in one limb on one side of the body. As the disease progresses, it eventually affects both sides. However, the symptoms may still be more severe on one side than on the other.
What Are The Symptoms Of Parkinson Disease
Parkinson disease symptoms usually start out mild, and then progressively get much worse. The first signs are often so subtle that many people don’t seek medical attention at first. These are common symptoms of Parkinson disease:
- Tremors that affect the face and jaw, legs, arms, and hands
- Slow, stiff walking
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Stage One Of Parkinsons Disease
In stage one, the earliest stage, the symptoms of PD are mild and only seen on one side of the body , and there is usually minimal or no functional impairment.
The symptoms of PD at stage one may be so mild that the person doesnt seek medical attention or the physician is unable to make a diagnosis. Symptoms at stage one may include tremor, such as intermittent tremor of one hand, rigidity, or one hand or leg may feel more clumsy than another, or one side of the face may be affected, impacting the expression.
This stage is very difficult to diagnose and a physician may wait to see if the symptoms get worse over time before making a formal diagnosis.