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Caring for Loved Ones With Parkinson’s Disease
The document provides information for caregivers of those with Parkinson's disease (PD). It describes PD as a progressive movement disorder caused by nerve cell death in the brain. Symptoms include tremors, slow movement, stiffness, and impaired balance. Caregivers should educate themselves about PD, understand that symptoms vary daily and manage the disease through equipment, documentation, and home modifications. Communication is important and caregivers should acknowledge their own feelings by talking to support groups. The document offers tips on caring for issues like freezing, swallowing difficulties, and tremors.
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Similar to Caring for Loved Ones With Parkinson’s Disease
Caring for Loved Ones With Parkinson’s Disease
- 1. Caring for LovedOnes With Parkinson’s Disease
- 2. Caring for LovedOnes With Parkinson’s Disease Objectives • Overview of Parkinson’s Disease • Symptoms of PD • Keys to Caregiving • Caregiving Tips The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 3. What is it? •Chronicand progressive movement disorder •Involves the malfunction/death of vital nerve cells in the brain The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 4. Who’s affected? •Nearly onemillion people in the US live with PD •Approximately 50,000 Americans are diagnosed each year •More likely to affect men •Incidence increases with age The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 5. What’s the cause? •EnvironmentalFactors –Environmental toxin –Traumatic brain injury The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 6. What’s the cause? •GeneticFactors –Not directly inherited The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 7. What are thesymptoms? Primary Motor Symptoms •tremor - hands, arms, legs, jaw and face •bradykinesia - slowness of movement •rigidity - stiffness of the limbs and trunk •postural instability - impaired balance/coordination The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 8. What are thesymptoms? Secondary Motor Symptoms •Freezing •Stooped posture •Speech problems •Difficulty swallowing The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 9. What are thesymptoms? Non-Motor Symptoms •Loss of sense of smell •Sleep disorder •Mood disorder The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 10. Keys to Caregiving •Beeducated •Understand PD is unpredictable •Manage the disease •Acknowledge feelings The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 11. Keys to Caregiving EducateYourself •PD is complicated •Symptoms and challenges vary greatly •It is a progressive illness The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 12. Keys to Caregiving UnderstandPD is Unpredictable •Symptoms of severity can vary throughout the day. •Proper medical management is key to keeping the most predictable response to treatment. •Report abrupt changes in a person’s ability to move. The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 13. Keys to Caregiving Managingthe Disease •Obtain any adaptive equipment or clothing needed. •Document any noticeable changes in your loved one. •Modify any areas you need to within the home to promote safety. The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 14. Keys to Caregiving Acknowledgeyour Feelings •Avoid acting on emotions with unconstructive behaviors. •Talk to someone about what you are feeling. •Join support groups. The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 15. Basic Caregiving Tips •Learnwhen to help and when not to. •Allow time for your loved one to do things for themselves, even if it takes longer. •Good communication is very important. •Watch for signs of depression. •Encourage exercise. The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 16. How to Copewith Freezing •Management method (STOP, THINK, PLAN, DO) •Weight shift method •Sound and vision methods •Floor strips The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 17. How to Copewith Difficulty Swallowing •Sit person upright and tilt head forward. •Cut food into small bites and encourage small sips of liquid. •If they tire while eating, serve smaller meals more often. •Serve well-cooked, smoother textured food and more tender cuts of meat. The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 18. How to Copewith Tremors •Hold the affected limb in a variety of positions •Have your loved one hold on to something •Press the upper arm against the body The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 19. General Meal PlanningTips •Eat a nutritionally balanced diet (plenty of fruits, vegetables, and whole grains) •Reduce sugar intake •Reduce sodium intake The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 20. Special Challenges ofCaring for Someone with PD •Incidence and severity of PD symptoms varies •Takes time and ongoing education to learn the multiple symptoms of PD and somewhat complicated medication regimes The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 21. Resources •National Institute ofNeurological Disorders and Stroke (www.ninds.nih.gov) •National Parkinson’s Foundation (www.parkinson.org) •Parkinson’s Disease Foundation (www.pdf.org) •Home Helpers Caregiver Training Curriculum The information contained on these pages is of a general nature and intended to provide a public information service. The information is not intended to be a substitute for consulting with a medical care provider.
- 22.
- 23. Home Helpers:Home Helpers: DebbieHumphrey, PresidentDebbie Humphrey, President www.TarponSpringsHomeCare.cowww.TarponSpringsHomeCare.co mm
Editor's Notes
- #4 Parkinson's disease (PD) is a chronic and progressive movement disorder, meaning that symptoms continue and worsen over time. Parkinson’s involves the malfunction and death of vital nerve cells in the brain, called neurons. Parkinson's primarily affects neurons in deep parts of the brain that control movement. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination. As PD progresses, the amount of dopamine produced in the brain decreases, leaving a person unable to control movement normally. http://www.pdf.org/en/about_pd
- #5 Nearly one million people in the US are living with Parkinson's disease. The cause is unknown, and although there is presently no cure, there are treatment options such as medication and surgery to manage its symptoms. Approximately 50,000 Americans are diagnosed with Parkinson's disease each year; however, this number does not reflect the thousands of cases that go undetected. Experts say that determining an actual count may be impossible as many people in the early stages of the disease assume their symptoms are the result of normal aging and do not seek help from a physician. Also, diagnosis is sometimes difficult and uncertain because other conditions may produce symptoms of PD and there is no definitive test for the disease. Men are one and a half times more likely to have Parkinson's than women, although it’s unclear why there is a discrepancy. Incidence of Parkinson’s increases with age, but an estimated four percent of people with PD are diagnosed before the age of 50. http://www.ninds.nih.gov/disorders/parkinsons_disease/detail_parkinsons_disease.htm#195683159
- #6 The causes of Parkinson’s remain unknown, despite decades of intensive study. Many experts think that the disease is caused by a combination of genetic and environmental factors, which may vary from person to person. Environmental Theory: Some scientists have suggested that Parkinson's disease may result from exposure to an environmental toxin or injury. Research has identified several factors that may be linked to Parkinson’s, including rural living, well water, manganese and pesticides. It is important to note that a simple exposure to an environmental toxin is never enough to cause Parkinson’s. http://www.pdf.org/en/genetics__parkinsons_gwinn
- #7 Genetic Theory: The vast majority of Parkinson's cases are not directly inherited. About 15 to 25 percent of people with Parkinson’s report having a relative with the disease. In large population studies, researchers have found that people with an affected first-degree relative, such as a parent or sibling, have a four to nine percent higher chance of developing PD, as compared to the general population. So, if a person’s parent has PD, his or her chances of developing the disease are slightly higher than the risk among the general population. http://www.pdf.org/en/genetics__parkinsons_gwinn
- #8 The specific group of symptoms that an individual experiences varies from person to person. Primary motor signs of Parkinson’s disease include: TREMOR, BRADYKINESIA, RIGIDITY, POSTURAL INSTABILITY. Resting Tremor: In the early stages of the disease, about 70 percent of people experience a slight tremor in the hand or foot on one side of the body, or less commonly in the jaw or face. The tremor consists of a shaking movement, and usually appears when a person's muscles are relaxed, hence the term "resting tremor." The affected body part trembles when it is not performing an action. Typically, the fingers or hand will tremble when folded in the lap, or when the arm is held loosely at the side. The tremor usually ceases when a person begins an action. Some people with PD have noticed that they can stop a hand tremor by keeping the hand in motion or in a flexed grip. The tremor of PD can be made worse by stress or excitement, sometimes attracting unwanted notice. The tremor often spreads to the other side of the body as the disease progresses, but usually remains most apparent on the initially affected side. Although tremor is the most noticeable outward sign of the disease, not all people with PD will develop tremors. Bradykinesia: Bradykinesia means “slow movement.” A defining feature of Parkinson’s, bradykinesia also describes a general reduction of spontaneous movement, which can give the appearance of abnormal stillness and a decrease in facial expressivity. Bradykinesia causes difficulty with repetitive movements, such as finger tapping. Due to bradykinesia, a person with Parkinson’s may have difficulty performing everyday functions, such as buttoning a shirt, cutting food or brushing his or her teeth. People who experience bradykinesia may walk with short, shuffling steps. The reduction in movement and the limited range of movement caused by bradykinesia can affect a person’s speech, which may become quieter and less distinct as Parkinson’s progresses. Rigidity: Rigidity causes stiffness and inflexibility of the limbs, neck and trunk. Muscles normally stretch when they move, and then relax when they are at rest. In Parkinson’s rigidity, the muscle tone of an affected limb is always stiff and does not relax, sometimes contributing to a decreased range of motion. People with PD most commonly experience tightness of the neck, shoulder and leg. A person with rigidity and bradykinesia tends to not swing his or her arms when walking. Rigidity can be uncomfortable or even painful. Postural Instability : One of the most important signs of Parkinson’s is postural instability, a tendency to be unstable when standing upright. A person with postural instability has lost some of the reflexes needed for maintaining an upright posture, and may topple backwards if jostled even slightly. Some develop a dangerous tendency to sway backwards when rising from a chair, standing or turning. This problem is called retropulsion and may result in a backwards fall. People with balance problems may have particular difficulty when pivoting or making turns or quick movements. http://www.ninds.nih.gov/disorders/parkinsons_disease/detail_parkinsons_disease.htm#195683159
- #9 Though not all people with Parkinson’s will experience all of these…additional secondary motor symptoms include: Freezing – which is stopping suddenly while walking Stooped posture, a tendency to lean forward Impaired fine motor dexterity and motor coordination Impaired gross motor coordination Decreased arm swing Speech problems, such as softness of voice or slurred speech caused by lack of muscle control AND Difficulty swallowing & chewing – also due to muscles working less efficiently http://www.pdf.org/symptoms_secondary
- #10 In addition to motor symptoms, most people with Parkinson’s experience nonmotor symptoms, those that do not involve movement, coordination, physical tasks or mobility. While a person’s family and friends may not be able to see them, these so-called “invisible” symptoms can actually be more troublesome for some people than the motor impairments of PD. Early Symptoms Many researchers believe that non-motor symptoms may precede motor symptoms — and a Parkinson’s diagnosis — by years. The most recognizable early symptoms include: loss of sense of smell sleep disorder - difficulty staying asleep at night, restless sleep, nightmares and emotional dreams, and drowsiness or sudden sleep onset during the day mood disorders - Emotional changes such as fear and anxiety - Some people become fearful and insecure. Perhaps they fear they cannot cope with new situations. They may not want to travel, go to parties, or socialize with friends. Some lose their motivation and become dependent on family members. Others may become irritable or uncharacteristically pessimistic. Depression - This is a common problem and may appear early in the course of the disease, even before other symptoms are noticed. Fortunately, depression usually can be successfully treated with antidepressant medications. If a person has one or more of these symptoms, it does not necessarily mean that individual will develop Parkinson’s, but these markers are helping scientists to better understand the disease process. Other Nonmotor Symptoms fatigue and loss of energy - The unusual demands of living with PD often lead to problems with fatigue, especially late in the day. Fatigue may be associated with depression or sleep disorders, but it also may result from muscle stress or from overdoing activity when the person feels well. skin problems – The skin may become very oily or very dry. These problems are also the result of an improperly functioning autonomic nervous system. Standard treatments for skin problems can help. cognitive issues - Some, but not all, people may develop memory problems and slow thinking. In some of these cases, cognitive problems become more severe, leading to a condition called Parkinson's dementia late in the course of the disease. This dementia may affect memory, social judgment, language, reasoning, or other mental skills. http://www.ninds.nih.gov/disorders/parkinsons_disease/detail_parkinsons_disease.htm#195683159
- #12 One of the keys to caregiving is to be educated on Parkinson’s Disease. PD is complicated. Symptoms will change and often worsen over time. Understanding that this will occur can help prepare for the future. Keep in mind that PD and its treatment can create a situation of “more questions than answers.” Not every symptom of the disease can be managed by medical treatment. A better understanding of Parkinson’s will result in more effective coping, proper long-term management and a more successful therapeutic outcome.
- #13 Another KEY TO CAREGIVING - Understand that PD is unpredictable. Symptoms of severity can vary throughout the day. Proper medical management is key to keeping the most predictable response to treatment. It is important to remember, most people with PD are performing at their personal best. Report abrupt changes in your loved one’s ability to move. It’s suggested by medical professionals, that any abrupt changes in a Parkinson’s patient should be recorded in a journal or diary, so that members of the treatment team can all be aware of the patient’s current condition. Home Helpers Caregiver Training Curriculum
- #14 A 3 rd key to caregiving is managing the disease. Since there is an increased risk of injuries in people who are physically disabled, accomplishing daily tasks should be made as easy and safe as possible. Obtain any adaptive equipment or clothing needed. You may using specially designed eating utensils or choosing clothing with Velcro rather than buttons. Document any noticeable changes in your loved one. Just like it’s recommended to keep a journal of abrupt changes in your loved ones’ ability to move….include in the journal any other noticeable changes. Modify any areas you need to within the home to promote safety. You may suggest customizing seating, toilets, tubs, & showers or installing grab bars where appropriate . Build relationships - Build relationships with everyone that is part of the “team” – other family members, doctors, caregivers, and friends. This assures that your loved one is getting the best treatment possible and that everyone is on the same page. The goal is to maximize the independence. The physical and mental tolls of the disease make it all the more important that the person feels they have control over as much of their life as possible. Home Helpers Caregiver Training Curriculum
- #15 Caring for a loved one with Parkinson’s can sometimes be frustrating. Family caregivers need to develop a support system for themselves. You must also realize you are not super human. Set realistic, attainable goals, and then strive to attain them. Don’t expect to tackle every problem right away. Avoid acting on emotions with unconstructive behaviors. Having an understanding of Parkinson’s and what your loved one is facing will likely help to eliminate frustration and allow you to be more patient with them. Talk to someone about what you are feeling. Join a support group so that you can share mutual experiences, learn together, and even receive support in coping with a common problem. Adopt some survival strategies. Remember that what works one day may not work another day. Home Helpers Caregiver Training Curriculum
- #16 Let’s move on to some basic caregiving tips: Learn when to help and when not to. Also, it’s important to allow time for your loved one to do things for themselves when possible – even if it does take longer. Good communication is critical! Communication is more than just speaking; gestures, a look, a shrug, the written word are all ways of conveying meaning. Make the most of the communication skills that your loved one has. Some communication hints: Ask them to repeat what they’ve said, if you do not understand it Ask them to speak more slowly. Echo their phrases to help slow them down and to show understanding. Be aware that talking may be frustrating and tiring for them. Give them time to respond. Allow them to finish their thought. Do not try to anticipate what you think they want to say. Watch for signs of depression . According to the Parkinson’s Disease Foundation, up to 60% of Parkinson’s patients experience mild or moderate depressive symptoms. It can be difficult to diagnose as some of the symptoms of depression are similar to those of PD, such as low energy, insomnia, excessive sleep, weight loss etc. Encourage Exercise, as appropriate – Exercise maintains joint mobility, reduces rigidity and joint stiffness, prevents muscle weakness and wasting, improves endurance and functional ability, improves circulation, and most importantly, it enhances mood and general well-being. Newest research suggests that exercise may influence the progression of Parkinson’s disease. Be certain to consult a physician, physical therapist or occupational therapist before beginning any exercise plan. Home Helpers Caregiver Training Curriculum
- #17 One of the secondary motor symptoms we mentioned earlier is freezing. Many people with Parkinson’s describe freezing as times when their feet get ‘glued to the ground’. They might not be able to move forward again for several seconds or minutes. They might feel like their feet are ‘frozen’ or stuck, but that the top half of their body is still able to move. They might freeze when they start to walk or when they try to turn around. But freezing does not just affect walking. Some people freeze during speaking or during a repetitive movement like writing or brushing their teeth. While experts do not know what causes freezing, it often happens when something interrupts or gets in the way of a sequence of movement. Some techniques you can try with your loved one: Management Method: • STOP: calm yourself. • THINK: what do you want to do? • PLAN: how are you going to do it? • DO: complete the task or movement. Weight Shift Method: • When they freeze, remind them to not try and move forward right away. Instead, have them gently move most of their weight to one leg (this is what normally happens when you go to walk). A shift of weight to their supporting leg will let them then step forward with the opposite leg. • They may be able to re-start walking again by gently rocking their head and shoulders from side to side. This rocking can help them shift body weight to the supporting leg. • Try walking on the spot/in place, to keep the stepping rhythm going, when stopping to open a door, for example. Using counting, sound or a rhythm can help – so you may like to try some of the ideas below: • Decide which foot you are going to step with first, then step forward after saying something like ‘one, two, three, step’ or ‘ready, steady, go’. You can say this aloud or silently to yourself, or it could be said by someone who is with you when you freeze. Whichever you choose, a strong, clear voice will encourage you to get started again. • Count your steps from one to 10 (start counting again when you get to 10), or chanting, ‘one, two, one, two, one, two’ or ‘left, right, left, right, left, right’. • Try re-starting your walking by saying a trigger word or phrase such as ‘step’, ‘big step’ or ‘go’. Encourage listening to music with a good rhythm on an MP3 player as you walk to prevent freezing. Floor strips If they tend to freeze in the same places at home and the previous methods described here don’t work, you could try using floor strips to help in overcoming freezing trouble spots. These are strips of tape stuck to the floor. They can help in doorways, corners, hallways, or in other narrow areas. 1. Take some sticky tape, such as masking or electrical insulating tape, in a color that contrasts with the floor or carpet. 2. Cut the tape to lengths of around 40cm to 55cm. 3. Stick them firmly to the floor or carpet, around 35cm to 50cm apart. 4. Where there is a corner, place the strips in a fan shape around the bend. 5. If the floor color or texture changes through a doorway, put a strip on the joint. If the flooring is the same on each side of the doorway, put strips the same distance on each side of the threshold. When walking over the strips, don’t worry where feet are placed. Step on or between the lines to suit yourself. These are simply methods that can give ‘cues’ to trigger one to move again once they’ve frozen. http://www.parkinsons.org.uk/PDF/FS63_FreezinginParkinsons.pdf
- #18 Difficulty swallowing is another symptom. Some ways to help cope with this: Make sure they are sitting upright and help them tilt their head forward. Cut food into small bites and encourage them to take small sips of liquid. If they tire while eating, serve smaller meals more often. Try serving well-cooked, smoother-textured food and more tender cuts of meat. You can also chop food in a food processor. See that your loved one eats a balanced diet and consumes enough to maintain proper weight. A good, nutritious, balanced diet is the key to good health in patients with PD, as it is with the general population. One point that came up repeatedly during the research was the importance of caregivers for Parkinson’s patients knowing the Heimlich maneuver which, or course, could save a choking person’s life. Home Helpers Caregiver Training Curriculum
- #19 Tremors can be bothersome and are among the most early and common symptoms. It may help to hold the affected limb in certain positions or have the person hold on to something for stability. They may also try holding the upper arm against the body. If tremors occur or worsen at the end or beginning of a dosing period, this may indicate the person is experiencing “wear off.” As a caregiver, you should communicate what you are seeing. The physician may need to be consulted as a change in medication may be needed – such as the dosage or time of day the dosage is given. This can greatly help to reduce tremors.
- #20 Certain lifestyle changes also may help make living with Parkinson's disease easier. Encourage your loved one to eat a nutritionally balanced diet that contains plenty of fruits, vegetables and whole grains. A balanced diet also provides nutrients, such as omega-3 fatty acids, that may be beneficial for people with PD. Reduce sugar intake! A diet with lots of sugar can have too many calories and too few nutrients. Reduce how much salt and sodium you eat to help reduce your loved one’s risk of high blood pressure. Help them to maintain or improve their weight to reduce chances of having high blood pressure, heart disease, stroke, certain cancers and most common types of diabetes. People with PD often lose weight without meaning to, due to nausea, loss of appetite, depression, and slowed movement. Unplanned weight loss together with malnutrition can lead to an weakened immune system, muscle wasting, loss of vital nutrients and risk for other diseases.
- #21 The incidence and severity of PD symptoms varies from day to day, even from one time of day to another. It takes skill and patience to know when to assist with a task, and when to simply allow the person more time to do the task independently. It also takes time and ongoing education to learn the multiple symptoms of PD and somewhat complicated medication regimes that offer the most symptom relief and improve quality of life. Caregivers must closely observe the Person with Parkinson’s (PWP) over time to detect and respond helpfully to subtle changes in motor (how we move) and mood (how we think and feel). Providing physical care to someone with advanced PD, such as re-positioning or help with bathing, can be exhausting and even cause injury to the caregiver. One source of information - National Parkinson’s Foundation - has a plethora of resources in regard to specific safety tips. You can find information on bedroom, bathroom, kitchen safety…how to maintain a healthy diet, exercise tips, etc. http://www.parkinson.org/Parkinson-s-Disease/Living-Well/Caring-for-Someone-with-PD-101/What-are-the-special-challenges-of-caring-for-some