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Caring For Someone With Parkinson’s Dementia

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How Is Parkinson Disease Diagnosed

Coping with Dementia in Parkinson’s disease for Care Partners

Parkinson disease can be hard to diagnose. No single test can identify it. Parkinson can be easily mistaken for another health condition. A healthcare provider will usually take a medical history, including a family history to find out if anyone else in your family has Parkinson’s disease. He or she will also do a neurological exam. Sometimes, an MRI or CT scan, or some other imaging scan of the brain can identify other problems or rule out other diseases.

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.

Home And Occupational Environments

Patient activities and environmental precautions. Patients should take reasonable care to avoid devices that generate strong EMI, which may cause the neurostimulation system to unintentionally turn on or off. Patients should also avoid any activities that would be potentially unsafe if their symptoms were to return unexpectedly. These activities include but are not limited to climbing ladders and operating potentially dangerous machinery, power tools, and vehicles. Sudden loss of stimulation may cause patients to fall or lose control of equipment or vehicles, injure others, or bring injury upon themselves.

Control of the patient controller.Advise patients to keep the patient controller away from children and pets in order to avoid potential damage or other hazards.

Activities requiring excessive twisting or stretching. Patients should avoid activities that may put undue stress on the implanted components of the neurostimulation system. Activities that include sudden, excessive or repetitive bending, twisting, or stretching can cause component fracture or dislodgement. Component fracture or dislodgement may result in loss of stimulation, intermittent stimulation, stimulation at the fracture site, and additional surgery to replace or reposition the component.

Household appliances. Household appliances that contain magnets may unintentionally cause the neurostimulation system to turn on or turn off.

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Paying For Assisted Living

As you consider whether or not assisted living is a good option for your loved one living with Parkinsons, youre also probably considering how to pay for it. The good news is that assisted living can be much more affordable than nursing home care or long-term in-home care. If an assisted living community is right for you or your loved one, here are some creative ways to pay for it.

The Basics Of Assisted Living

Caring for Someone with Parkinsons Disease: Key Facts and Helpful Tips ...

An assisted living community could be an apartment building, a campus-like setting, or even a large converted house. According to the Assisted Living Federation of America , most have between 24 and 120 units that vary in size from a single room to a full apartment. Residents generally have a lot of freedom in terms of what they do and when they do it, but they should also get plenty of support from trained caregivers.

Assisted living is regulated by each state rather than by the federal government, so you can expect wide variation in what each community offers, which is especially important to understand when considering this option for someone living with Parkinsons.

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What Is Parkinson’s Disease Dementia

Parkinsons disease dementia is a brain disorder that occurs in somebut not allpeople living with Parkinsons disease. The brain cell damage caused by the disease can lead to a loss of memory and other cognitive functions such as problem solving and speed of thinking. These changes in thinking and behavior can impact your daily living, independence, and relationships.

In those who do develop Parkinsons disease dementia, there is at least one yearand usually 10 to 15 yearsbetween the Parkinsons diagnosis and the onset of dementia. According to estimates by the Alzheimers Association, 50% or more of people with Parkinson’s disease eventually experience dementia, although there are a number of risk factors that impact the likelihood of developing symptoms:

  • Parkinsons patients who experience hallucinations, excessive daytime sleepiness, and more severe motor control problems are at higher risk for dementia.
  • Dementia is more common in people who are older at onset of Parkinsons.
  • Dementia is a bigger risk factor in non-tremor predominant Parkinsons.
  • Overwhelming stress, cardiovascular disease, and adverse reactions to the Parkinson’s disease drug levodopa can also indicate an increased risk for developing dementia.
  • Dementia is relatively rare in people who develop Parkinsons before age 50, no matter how long they have had the disease.

Tips For Caregivers And Families Of People With Dementia

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A caregiver, sometimes referred to as a caretaker, refers to anyone who provides care for another person. Millions of people living in the United States take care of a friend or family member with Alzheimers disease or a related dementia. Sometimes caregivers live with the person or nearby, other times they live far away. For many families, caring for a person with dementia isnt just one persons job, but the role of many people who share tasks and responsibilities. No matter what kind of caregiver you are, taking care of another person can be overwhelming at times. These tips and suggestions may help with everyday care and tasks.

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The Symptoms Of Parkinsons Disease

Parkinsons disease gradually impairs a persons ability to move, walk, talk and swallow, and it typically develops when patients are in their 50s or 60s . For some people, the condition can be severely debilitating in the long term, while others are able to function relatively well even after 25 years of living with the disorder.

Drugs Used To Treat Parkinsons Disease

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Medications can help manage problems with limb movement, mobility, and tremors. Since Parkinsons in the elderly varies from person to person, your loved ones doctor will likely prescribe medications based on their individual symptoms and medical history. All medications have side effects, so its important to talk to a medical provider about whether a certain drug is right for your parent with Parkinsons disease.

Since people with Parkinsons disease have low brain dopamine concentrations, many of these medicines increase or substitute for dopamine, according to Mayo Clinic. Twenty-four different drugs are currently approved by the Food and Drug Administration for the treatment of Parkinsons disease, and that list continues to grow as new research progresses. Consult your doctor for more information about individual medicines that may help your loved one. Some common families of medications to reduce PD symptoms include the following:

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Who Gets Early Onset Parkinsons Disease

About 10%-20% of those diagnosed with Parkinsons disease are under age 50, and about half of those are diagnosed before age 40. Approximately 60,000 new cases of Parkinsons are diagnosed each year in the United States, meaning somewhere around 6,000 12,000 are young onset patients.

Is it genetic or hereditary?

The cause of Parkinsons disease is not yet known. However, Parkinsons disease has appeared across several generations of some families, which could indicate that certain forms of the disease are hereditary or genetic. Many researchers think that Parkinsons disease may be caused by genetic factors combined with other external factors. The field of genetics is playing an ever greater role in Parkinsons disease research, and scientists are continually working towards determining the cause or causes of PD.

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Make Plans For The End Of Life

Advance care planning is an important part of end of life care. Planning ahead can improve the quality of life of the person with LBD and their caregivers and help ensure that the person with LBD has input into health care and legal and financial decisions. Having these conversations early allows the person to actively participate in the decision-making process and express their personal wishes.

For health care providers and caregivers who donât have experience with LBD, it can be challenging to recognize the end of life. LBD is unpredictable. It can be hard to know when the person will die, and the process may be shorter or longer than expected, which may make coping more difficult. Staying in touch with the personâs physician can help you decide when to pursue end of life care and what to expect towards the end of life. Some physicians may be unlikely to initiate end of life conversations. It is important for caregivers to take an active role during appointments and come prepared.

Spending time and doing simple activities together towards the end of life may help ease the process. Listening to music, spending time outdoors, or watching a favorite television show are just a few examples of activities you can do. Some family members find a lot of value in simply holding their loved oneâs hand and talking to them in their last few days.

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How To Care For Someone With Parkinsons

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Youve just learned that your loved one has Parkinsons disease, and youre freaking out. Youve only heard about Parkinsons disease from movies and books, but it was all abstract until now.

How do you take care of someone with Parkinsons disease? Are you strong enough to handle the change? As the primary caregiver, how do you keep yourself from breaking down? How Can you be a successful Parkinsons disease caregiver?

All these questions and emotions are valid and normal. But to succeed as a caregiver, you must learn about Parkinsons disease and what your loved one will need.

Heres a short guide to get you started.

Stay On Top Of Insurance

Parkinsons Awareness Training

If you were always the one who handled questions of insurance coverage, great but if not, you may want to familiarize yourself with the terms of your health insurance. Youll need to know details about if and to what extent your plan covers prescriptions, therapy sessions and other unexpected items.

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Tips For Changes In Communication And Behavior For People With Dementia

Communication can be hard for people with Alzheimers and related dementias because they have trouble remembering things. They also can become agitated and anxious, even angry. In some forms of dementia, language abilities are affected such that people have trouble finding the right words or have difficulty speaking. You may feel frustrated or impatient, but it is important to understand that the disease is causing the change in communication skills. To help make communication easier, you can:

  • Reassure the person. Speak calmly. Listen to his or her concerns and frustrations. Try to show that you understand if the person is angry or fearful.
  • Allow the person to keep as much control in his or her life as possible.
  • Respect the persons personal space.
  • Build quiet times into the day, along with activities.
  • Keep well-loved objects and photographs around the house to help the person feel more secure.
  • Remind the person who you are if he or she doesnt remember, but try not to say, Dont you remember?
  • Encourage a two-way conversation for as long as possible.
  • Try distracting the person with an activity, such as a familiar book or photo album, if you are having trouble communicating with words.

Caring For A Person With Lewy Body Dementia

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As someone caring for a person with Lewy body dementia , you will take on many different responsibilities over time. You do not have to face these responsibilities alone. Many sources of help are available, from adult day centers and respite care to online and in-person support groups.

Below are some actions you can take to adjust to your new roles, be realistic about your situation, and care for yourself.

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What To Avoid As A Caregiver For Parkinsons Disease

These are some things to avoid while caring for someone with Parkinsons disease:

  • Avoid changing their day-to-day schedule: Stick to a daily routine as far as possible, so the person knows what to expect at each time of day. They may struggle to cope with changes to their routine.
  • Avoid distracting stimuli: Try to keep the persons environment free of distractions, such as loud noises or brightly-patterned decor, as it can be confusing and disorienting.
  • Avoid changing their environment: Try not to make any changes to the persons surroundings, such as changes to the layout of the house. Keeping it the same can help prevent falls caused by disorientation.
  • Avoid confusing them: When you communicate with the person, use simple sentences and ask only yes or no questions. Avoid interrupting them or finishing their sentences. Though it may take them time to complete a sentence, interjecting in between can confuse and frustrate them.
  • Avoid losing your patience with them: Parkinsons disease can cause the person to speak and move slowly. Be patient with them and try to match their pace to make them more comfortable.
  • Avoid shouting at them: There may be times when you get angry or frustrated with your loved one. However, try to refrain from shouting at them or speaking to them sharply. The dementia that may accompany Parkinsons disease can cause them to respond aggressively. Stay calm and be still while you talk to them.

Challenges You As A Caregiver Are Likely To Face

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There are challenges that a person with Parkinson’s disease confronts. First, the disease can vary from day to day. There will be times when they can function almost normally and then other times when they will be very dependent. This is a natural part of the disease. But it can make a caregiver feel that the person is being unnecessarily demanding or manipulative. Keep in mind that Parkinson’s is unpredictable and each day can pose new challenges for you and your loved one.

Also, keep in mind that Parkinson’s is a progressive disorder. While medications and surgery can provide significant relief of symptoms, they do not stop the progression of the disease.

Depression is also very much a part of the disease. It is important to recognize the signs and symptoms of depression so you can help your loved one seek treatment promptly. And, if you are feeling depressed and having trouble coping, it’s just as important to get care for yourself.

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Parkinsons Symptoms: What To Expect

Parkinsons symptoms vary from person to person. Sometimes, early symptoms of PD may be dismissed as normal effects of aging, according to the National Institute on Aging. The onset of Parkinsons in the elderly may be subtle slower movements, impeded coordination, and mild tremors may not be particularly noticeable at first. Symptoms often begin on one side of the body but will likely come to affect both sides as the disease progresses.

Some symptoms of Parkinsons may include the following:

  • Trouble swallowing, chewing, and speaking
  • Sleep disruption

Parkinsons symptoms by stage

During the early stages of the disease, Parkinsons symptoms are often mild and dont interfere much with daily life. For this reason, diagnosis may be delayed, according to Cleveland Clinic. As PD progresses, symptoms become worse. In the middle stages, balance problems and falls become more common, and tremors may increase. While people can remain generally independent, activities of daily living can become more difficult.

For someone living with Parkinsons, help at home eventually may be necessary, as standing and walking may become harder over time. By the time PD reaches its later stages, dementia, hallucinations, and delusions are likely. Most people cant move independently when the disease reaches that point, and full-time nursing or family care becomes required.

How Caregivers Can Help People Who Have Parkinsons Dementia

Parkinsons dementia can be challenging for both the person dealing with the disease and their loved ones. But as a caregiver in their life, you offer one of the most critical components of their treatment.

Here, experts outline the best ways to care for someone with Parkinsons dementia.

Speak to your loved one in a calm and quiet manner. Raised voices and displays of frustration will typically worsen an already challenging situation.


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Other Tips For Caregivers

Arming yourself with the proper knowledge and preparing for the degenerating symptoms of the condition are the first and most essential steps for a caregiver taking care of a loved one with Parkinson’s disease.

Other tips that can make this challenging prospect a little more manageable include:

  • Maintain a healthy diet: Maintaining a healthy diet for your loved ones is as important as ensuring they stay on their medication and treatment plan.
  • Ask for help: Don’t feel like you have to take on all of the care alone. If you can afford it, you can hire assistance or reach out to other family and friends to help you with the care.

Can Parkinsons Dementia Be Reversed

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No specific cure has been identified for Parkinsons Disease Dementia. Rather, treatments have been aimed at reducing the symptoms of dementia and helping the patient maintain a high quality of life. Doctors treating patients of PD Dementia generally prescribe medications such as:

  • Antidepressants
  • Cholinesterase inhibitors
  • Clonazepam and L-dopa

Serotonin reuptake inhibitors are known to reduce depression symptoms. The ones widely prescribed by doctors include:

Cholinesterase inhibitors help reduce the effects of cognitive decline in people with dementia whereas Clonazepam helps enhance sleep quality. L-dopa helps reduce movement issues caused by PD but runs the risk of making confusion and dementia symptoms worse.

Doctors treating PD Dementia patients may also prescribe antipsychotic drugs but generally do so with caution, the reason being these reduce psychotic episodes but increase Parkinsons symptoms. The use of these drugs may also cause increased confusion and change in consciousness. For the record, Pimavanserin and Nuplazid have been identified as effective antipsychotic drugs.

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