Saturday, April 13, 2024

Caring For Someone With Parkinson’s

Drug Therapy And Research

CareMAP: Caring for Someone with Advanced Parkinson’s

If the disease progresses beyond minor symptoms, drug treatment may be indicated. Drug therapy for Parkinsonâs typically provides relief for 10â15 years or more. The most commonly prescribed medication is L-dopa , and this helps replenish some of the depleted dopamine in the brain. Sinemet, a combination of levodopa and carbidopa, is the drug most doctors use to treat Parkinsonâs disease. Recent clinical studies have suggested, in the younger person, the class of drugs called âdopamine agonistsâ should be used prior to levodopa-carpidopa except in patients with cognitive problems or hallucinations. In those older than 75, dopamine agonists should be used cautiously because of an added risk of hallucinations.

Other drugs are also used, and new drugs are continually being tested. It is common for multiple drugs to be prescribed because many of them work well together to control symptoms and reduce side effects. Contrary to past beliefs, starting Sinemet in newly diagnosed people does not lead to early symptoms of dyskinesia . Current knowledge is that the disease progression causes dyskinesias, not a âresistanceâ to the drug.

Quality of life studies show that early treatment with dopaminergic medications improves daily functioning, prevents falls, and improves a personâs sense of well-being.

Navigating The Moods Of The Patient

People with PD may have emotions come up as they grieve the loss of their former abilities. Sometimes they may feel frustrated and lash out in anger or insist on doing something they should not, such as climbing a ladder when they have balance impairment. As the care partner, you may need to establish limits on their activities and have compassion for their emotional outbursts. Many people with PD also experience mood changes, such as anxiety and depression, and these symptoms should be discussed with the patients doctor to facilitate proper treatment.1

Volunteer To Help Out

Everyday responsibilities like shopping, cooking, and cleaning become much more difficult when you have a movement disorder. Sometimes people with Parkinsons need help with these and other tasks, but they may be too proud or embarrassed to ask for it. Step in and offer to run errands, prepare meals, drive to medical appointments, pick up medications at the drug store, and help with any other day-to-day tasks they have difficulty with on their own.

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Coping With Cognitive Changes And Parkinsons

Cognitive decline and behavioral changes often occur in the middle and late stages of Parkinsons disease. Caregivers must be particularly understanding and flexible when loved ones begin experiencing changes in memory and thinking. A PD patient may have trouble with planning, problem-solving, multitasking and spatial reasoning, which can make daily activities frustrating, impossible or even dangerous. Its important to encourage independence but remain focused on ensuring their safety.

Changes in a loved ones brain may also affect their ability to communicate. Approximately 89 percent of people diagnosed with Parkinsons disease also have some type of progressive motor speech disorder. A PD patients voice may become softer or hoarser, they may have difficulty finding words, or their speech may become slurred. Working with a speech therapist can help an elder maintain their communication skills and confidence in social settings. Continue to encourage open communication, minimize distractions, and allow more time for responses as well as verbalized requests.

Read:Parkinsons Disease Top Tips: Communicating in Spite of Speech and Voice Disorders

Tips For Caring For Someone With Parkinsons Disease

Carers in Derbyshire

Parkinsons disease is a neurodegenerative disorder that affects predominantly dopamine-producing neurons in a specific area of the brain called substantia nigra. While genetic markers and environmental triggers can be contributing risk factors, the root cause is unknown. The end result, however, is that dopaminergic neurons gradually break down or die. As dopamine levels decrease, abnormal brain activity takes place, leading to impaired movement. People usually develop the disease around age 60 or older, and men are more at risk than women.

Symptoms of this progressive nervous system disorder generally develop slowly over years, and typically include tremors, stiffness, slowing of movement, walking or balance problems, decreased ability of automatic movements , and slurred speech. Non-motor-related symptoms also often manifest, such as apathy, depression, constipation, sleep behavior disorders, loss of sense of smell, and cognitive impairment. While there is no cure for PD, medications and even surgery might significantly improve symptoms. The disease itself is not fatal, but disease complications can be serious.

Grooming Try having them use an electric toothbrush and/or razor if their fingers are often stiff. If you help with brushing or flossing, try not to touch the back of the tongue to prevent gagging. Keep a small towel handy for any drooling.

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How Does It Work

This course will give you access to multimedia resources about how to best support the families and care partners of people living with Parkinson’s. You’ll be able to read, watch and listen to multimedia and interactive resources that have been chosen by experts, and knowledgeable care partners. You’ll then attend an optional webinar to discuss what you have learnt, the challenges and solutions. You’ll then take an assessment to demonstrate what you’ve learnt.

You can log in at any time to this self-directed learning to work through the course and assessment at a pace that suits you. A certificate and digital badge are available to download once you have passed the quiz. The course, webinar and assessment should take a minimum of 3 hours to complete. The 3 hours are split between the initial discussion presentations, the additional learning/resources and the webinar. Each of these takes approximately 1 hour. If you fully engage with all the supporting resources and guidance it will take longer.

What Does It Mean To Be A Parksinons Disease Care Partner

Being a care partner for someone with Parkinsons disease is a whirlwind of challenges, responsibilities, setbacks and victories. It is a very difficult, but potentially very rewarding role. Knowing that many of you reading this are trying to navigate the complexities of being a care partner, we thought it would be helpful to hear from others in your situation. If you havent already, you might find that reading our Becoming a Care Partner overview will be helpful as well.

For todays blog, I spoke with three care partners to bring their unique perspectives to our readers who might be grappling with similar issues. Remember, every person with PD is different, their disease progression is different, and each care partner is different so keep that in mind as you read on. But despite those differences, we think you will find helpful advice, bits of inspiration, and some solace in their stories. All names have been changed for privacy.

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Caring For Someone With Advanced Parkinsons

As Parkinsons advances, there is a shift in overall daily caregiving responsibilities. You will face many challenges, but you can ensure best care with thoughtful planning and knowledge. This video provides an overview of what you need to know as the caregiver of someone with advanced Parkinsons. Watch the rest of the videos in the series, and refer to them as needed, for more information and tips on a variety of caregiving issues.

The information here offers suggestions and helpful hints, but is not designed to answer all questions. Each person with Parkinsons is unique, so the suggestions may need to be modified for your particular situation. You are strongly recommended to seek and build a team of professionals in your local area to help you on your caregiving journey. If you have questions or need a referral to a local provider, call the Parkinsons Foundation Helpline at 1-800-4PD-INFO .

In 2016, the Parkinsons Foundation hosted a Caregiver Summit that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for coping with the complex problems that arise as a result of Parkinsons. If you missed the event, dont worry! All the general sessions were recorded and are available on our YouTube channel.

Build A Good Relationship

Caring For Someone With Advanced Parkinson’s Disease

Caring for a loved one with Parkinsons can place a great deal of stress on your relationship. A person you love is changing both physically and mentally, and both of you are needing to adapt.

The Michael J. Fox Foundation recommends keeping communication as open as possible and being flexible with your changing roles. Be aware that some changes, such as new apathy or irritability, is not directed personally at you.

If both you and your loved one are willing, consider consulting a therapist together. You can work through any of the anger, denial, or upset you are feeling, and find ways to keep your relationship healthy and loving.

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Be Realistic About Your Experiences And Needs

  • Friends and family members who have infrequent contact with the person with Parkinsons often underestimate the severity of symptoms as well as your level of caregiver burden. At the same time, they might be able to help identify serious changes in the persons status that you did not notice because things progress gradually over time.
  • Providing physical care to someone with advanced PD, such as re-positioning or helping with bathing, can be exhausting and even cause physical injury to the caregiver.
  • Caregivers focus on loved ones, but need to remember to care for themselves. This includes building a support network, recognizing stressors and reaching out for help or a break, when needed.
  • To order free caregiver resources or speak with PD specialists, call the Parkinsons Foundation Helpline at 1-800-4PD-INFO .

Advice For Care Partners

Being a care partner can sometimes be challenging, but having a care partner is essential to the well-being of every person with Parkinsons. Here are three areas to focus on as you adjust to your new role as a care partner while maintaining a healthy and supportive relationship with your loved one.

Managing Your Loved One’s Care

Even though care partners do not need special medical training, they play a central role in the medical care of people with PD. Accompany your loved one to doctor’s appointments, with their permission. You can offer an outside view on how the person with Parkinson’s has been doing in the interim since the last visit. You may also recognize new symptoms or subtle changes that the person with Parkinson’s doesn’t, such as changes in mood or behaviors, withdrawal from social interaction, or speech that has become softer or more monotone.

When you and your care partner attend appointments together, you both hear what the doctor has to say. You can compare notes afterword and together discuss management options offered. And, you can both be clear on the treatment plan.

Keeping track of all the details associated with medical care can be overwhelming. Here are some tips to help:

Parkinson’s and Your Relationship

If you feel comfortable doing so, visit a counselor or therapist together or individually to work through the many changes and emotions you are experiencing and to learn how you can have a healthy and supportive relationship.

Caring for Yourself

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How Can Parkinson’s Affect Someone At The Advanced Or Palliative Stage

Parkinsons progresses in stages: diagnosis, maintenance, advanced and palliative. Professionals should have talk to people with Parkinsons about advance care planning in the earlier stages of the disease. This can allow them to express their wishes and preferences for their care in the later stages of the disease and make plans for the future.

Although the condition progresses differently and at a different speed for each person, the advanced stage can potentially cover a long period of time.

Problems that affect someone with advanced Parkinsons may include:

  • medicines being less effective at managing symptoms than before
  • having to take lots of medicines to manage symptoms and side effects
  • more off periods when the effects of medication are reduced, and people experience movement fluctuations and involuntary movements
  • increased mobility problems and falls
  • swallowing difficulties
  • less control of their Parkinsons symptoms, which become less predictable
  • pain.

Some of the more advanced symptoms can lead to increased disability and poor health, which can make someone more vulnerable to infection, such as pneumonia. People with Parkinsons most often die because of an infection or another condition, usually caused by Parkinsons.

How To Help Someone With Parkinsons Disease Thrive

What to Expect When Caring for Someone with Parkinson

The symptoms of Parkinsons can have a significant impact on physical, mental and social abilities, but family caregivers can make life much easier for seniors who are living with this condition. By learning about PD and planning ahead, a caregiver may be able to anticipate changing needs and abilities and resolve issues before they negatively affect a loved one. Taking proactive steps to ensure a PD patients safety, extend their independence and preserve their functional abilities will help them remain in their own home longer and have a beneficial impact on their overall quality of life.

Caregiver Tips For Parkinson’s Psychosis

While it can be difficult to take care of someone with psychosis, these suggestions may help:

Learn to spot the signs. Its important that caregivers get training in how to recognize psychosis,” says Michael S. Okun, MD, a professor and the chairperson of the Department of Neurology at the University of Florida College of Medicine, in Gainesville, and the national medical director of the Parkinsons Foundation. “The patients spouse may be embarrassed or not aware of the hallucination or delusion.” Because Kathie is a nurse, she says that she knew she had to talk to medical professionals when she had concerns, and speaking with them helped her cope.

Be reassuring. When hallucinations or delusions occur, confront your loved one gently, not aggressively, Dr. Okun says. Your doctor can give you advice about how to address the problem medically.

Dont take psychotic behavior personally. The main thing is to always remember that psychosis is part of the disease, Okun says. The delusions, even if they are clearly incorrect and directed at you, seem very real to the patient.

Being A Health Care Advocate

Part of being a care partner is helping get the patient to doctors appointments and taking part in the discussions with the doctor. Its often helpful to have two people listening to the doctors recommendations, as well as asking questions. Find a healthcare professional with whom you feel comfortable, and feel free to get a second opinion if you want additional options or a different course of treatment.1

Q: What Is Your Favorite Activity To Do With Your Partner With Pd

Ellen: We enjoy good food and wine, so have been trying to put extra effort into meals since we are not dining out due to COVID-19. We also enjoy the arts but have been more limited with COVID. We have been able to find streaming concerts online.

Gary: We enjoy preparing and sharing meals, walks, exercising, solving problems and playing Gin Rummy.

Brenda: We love to share meals and watch TV together.

How Parkinsons Symptoms Affect Daily Life

Caring For a Loved One With Parkinson’s Disease

Symptoms of Parkinsons primarily affect how the body moves, which significantly changes daily life for both you and your older adult.

Symptoms may include:

  • Tremors a main symptom of Parkinsons. It often begins in the hands, arms, and legs, often happening when the body is not moving and going away when movement starts.
  • Slowed movements a key marker of Parkinsons, it may look like dragging feet on the floor or taking an extremely long time to complete basic tasks.
  • Contracture a growing rigidity of muscles and joints that limit range of motion and flexibility. It can even lead to skeletal deformities.
  • Balance problems weakness, muscle rigidity, and slowed movements all contribute to balance problems and increased risk of falling.
  • Speech changes decrease in voice volume as well as slurred or slowed speech accompanies progression of Parkinsons

Additional non-motor symptoms can also impact daily life. These include excessive sweating, loss of smell, mood/personality changes, constipation, urinary urgency, difficulty writing, trouble sleeping, hallucinations, and even neck pain.

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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.

How Is Parkinson’s Managed

There is currently no cure for Parkinsons but there are medications and therapies that can help to manage Parkinsons symptoms.

Medicines that increase the level of dopamine in the brain are the main treatment used to manage the symptoms of Parkinson’s. Medicines are tailored to each individuals needs.

Symptoms will get worse when someones Parkinsons medicines are wearing off and improve again after Parkinsons medicines are taken. If people with Parkinsons dont get their medication at the right time, it leads to their motor symptoms becoming uncontrolled. It can take some time to get their symptoms under control again. If you work in a hospital or care home, it is important to be aware that medicine timings will vary from person to person and may be different to ward medicine rounds.

As well as medicines, surgical options are available for some people with Parkinson’s, depending on their symptoms.

Treatments can help to manage the symptoms, but may become less effective in the later stages of the condition.

Parkinsons UK has more information on how Parkinsons affects people and how it can be managed.

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