The Progression Of Caregiving In Pd
The role of the caregiver in Parkinsons disease is ever changing, with the demands increasing as the disease progresses and symptoms worsen. In the early stages of the disease, caregivers are helping their loved one cope with the diagnosis and learning how to manage the medications. Caregivers may encourage and support their loved one in completing daily physical therapy exercises and assist them due to their slowness in movement.4
As an individuals disease progresses into mid-stage, the caregivers duties and burden significantly increase. Fatigue and excessive daytime sleepiness may derail daily plans, and frustrations around communication increase.1
In the late stage of PD, caregivers face significant responsibility and challenges. Their loved one may have significant mobility impairments, and caregivers often provide much hands-on assistance. Many people with late stage PD experience freezing episodes, sudden but temporary inability to move. Freezing episodes can contribute to falls, and fall prevention is important in the late stage of PD. Many assistive devices are available to help people with late stage PD with eating, dressing, and walking. Late stage PD may also mean changes to the way a person thinks, including forgetfulness, confusion, and sometimes, dementia. It is important to remember that not everyone experiences all the symptoms of PD, and the role of the caregiver will also vary based on the needs of their loved one.1
Peace Of Mind And Reassurance
Rated Outstanding by the Care Quality Commission
The Good Care Group is the only live-in care provider in the UK to achieve an Outstanding rating by CQC across all five categories safe, effective, caring, responsive and well-led. We know this provides families with peace of mind that their loved one is receiving the best possible care.
A fully managed and regulated Parkinsons care service
We provide a fully managed and regulated Parkinsons care service which offers families reassurance at a time they need it most. Unlike introduction agencies who are not regulated by CQC, all our professional carers are directly employed and managed by us. We ensure they are supervised by an experienced manager and supported by clinical experts 24 hour a day, 7 days a week.
Local teams with national coverage
We operate nationwide with a local approach to management of our teams near you. Each dedicated care manager has as small portfolio of clients to support, enabling the care team to provide a tailored one-to-one approach with unrivalled levels of monitoringand support.
Maintaining Independence In Daily Tasks
In addition to impaired mobility, Parkinsons can make seemingly simple tasks like brushing teeth and eating very difficult. But staying as independent as possible is important for your older adults self-esteem and well-being.
Assistive devices like dressing aids, shower chairs, and reacher grabbers can allow older adults to accomplish more tasks on their own. Plus, there are products that are designed specifically for Parkinsons that counteract symptoms like tremors and contracture. For example, spoons for people with Parkinsons are specially designed to make feeding oneself easier and less messy.
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Causes Of Parkinsons Disease
Parkinsons disease is an idiopathic illness, which means that its cause is unknown.
The signs and symptoms it present are caused by the loss of nerve cells in the part of the brain called substantia nigra.
This part of the brain is responsible for the production of dopamine, a neurotransmitter that links the brain and nervous system to coordinate body movements.
Loss of dopamine results in uncoordinated body movements, thereby producing the signs and symptoms of the disease.
Though the exact cause of Parkinsons disease is still unknown, there are possible explanations that may be responsible for the condition, such as:
- Genetics. Studies have shown that a minority of cases of PD have genetic involvement.
- Environmental factors. Exposure to pesticides, herbicides, and industrial pollution is now being looked at as a possible cause of PD. However, the results are still inconclusive.
- Presence of Lewy bodies. Lewy bodies are clumps of substances in the brain cells. These are often seen in people with Parkinsons disease. The studies about them are still inconclusive, but researchers believe that these substances hold useful information to what causes PD. Researchers are also focusing into alpha-synuclein found in the Lewy bodies.
The following are the associated risk factors in developing Parkinsons disease:
A Specialist Pathway For Palliative Care At Home
For those with a life-limiting illness or a terminal condition, most of us given the choice would wish to end our days in the comfort of our own home. However, the percentage of people in the general population who can do that is as low as 19%. By comparison, our approach to one-to-one palliative care at home has enabled 81% of our clients to pass away in the place they love most their own home.
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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
Sidebar: Advances In Circuitry Research
The brain contains numerous connections among neurons known as neural circuits.
Research on such connections and networks within the brain have advanced rapidly in the past few years. A wide spectrum of tools and techniques can now map connections between neural circuits. Using animal models, scientists have shown how circuits in the brain can be turned on and off. For example, researchers can see correlations between the firing patterns of neurons in a zebrafishs brain and precise behavioral responses such as seeking and capturing food.
Potential opportunities to influence the brains circuitry are starting to emerge. Optogenetics is an experimental technique that involves the delivery of light-sensitive proteins to specific populations of brain cells. Once in place, these light-sensitive proteins can be inhibited or stimulated by exposure to light delivered via fiber optics. Optogenetics has never been used in people, however the success of the approach in animal models demonstrates a proof of principal: A neural network can be precisely targeted.
Thanks in part to the BRAIN Initiative, research on neural circuitry is gaining momentum. The Brain Research through Advancing Innovative Neurotechnologies Initiative is accelerating the development and application of new technologies that enable researchers to produce dynamic pictures of the brain that show how individual brain cells and complex neural circuits interact at the speed of thought.
NIH Publication No. 15-5595
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Home Safety Considerations For Parkinsons Disease
Mobility problems are common symptoms of Parkinsons disease, therefore maximizing the safety and accessibility of a patients home is a top priority. Since seniors with PD often use mobility aids like canes, walkers, rollators or wheelchairs, wide, clear pathways in rooms and hallways are important. The following home elements can make it difficult for a person with limited mobility to get around their home safely.
Eating Drinking And Parkinson’s Disease
- Don’t rush your meals. Allow the extra time you need to finish your meal. Rest your elbows on the table to provide more motion at your wrist and hand.
- Sit with your knees and hips bent at a 90-degree angle in a straight-back chair.
- Use utensils with built-up, lightweight handles, or use a “spork” — a spoon and fork in one. Use a rocker knife for cutting food.
- Use a non-skid mat to stabilize objects on the table.
- Use a plate guard or plate with a raised lip to prevent food from spilling.
- Use a long straw with a non-spill cup or use a plastic mug with a large handle.
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Related Diagnosis: Lewy Body Dementia
Current research is helping to differentiate dementia related conditions in relationship to Parkinsonâs disease. Doctorâs use a 12-month arbitrary rule to aid in diagnosis. When dementia is present before or within 1 year of Parkinsonâs motor symptoms developing, an individual is diagnosed with DLB. Those who have an existing diagnosis of Parkinsonâs for more than a year, and later develop dementia, are diagnosed with PDD.
In the simplest terms, Lewy bodies are abnormal clumps of proteins that develop in nerve cells. Cholinesterase inhibitors, medications originally developed for Alzheimerâs disease, are the standard treatment today for cognitive DLB and PDD symptoms. Early diagnosis is important, as DLB patients may respond differently than Alzheimerâs disease patients to certain drug, behavioral, and dementia care treatments.
This challenging, multi-system disorder involving movement, cognition, behavior, sleep, and autonomic function requires a comprehensive treatment approach to maximize the quality of life for both the care recipient and their caregiver. It is very important to pay attention to symptoms of dementia and to search for an expert clinician who can diagnose the condition accurately.
How Parkinsons Symptoms Affect Daily Life
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.
Recommended Reading: Do All Parkinson’s Patients Get Dementia
What Is Included In Our Service
Our highly personalised Parkinsons disease home care includes:
- Full assessment before care starts
- Bespoke and flexible care plan developed with input from the family and other healthcare professionals
- Matching of the most suitable care team to meet the holistic needs of our clients
- Dedicated care team led by an expert regional care manager
- Meal planning and household tasks
- Social activities and lifestyle enhancement
- Specialist support and expertise – 24 hours a day, 7 days a week
- Access to clinical expertise and medical support
Getting Dressed With Parkinsons Disease
Dressing someone with Parkinsons disease may become a time- and labor-intensive task as their motor skills and strength wane. In addition, muscle stiffness and painful muscle cramps can make dressing difficult and unpleasant. Whenever possible, replace buttons or zippers with Velcro or magnetized fasteners. Opt for loose-fitting clothing, which is easier and more comfortable to get on and off. An extra-long shoehorn can help with putting on shoes while seated. One of the most important things for a caregiver to remember when providing assistance with dressing is to go slow and set aside plenty of time for this activity of daily living .
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Complications Of Parkinsons Disease
What To Expect When A Loved One Has Parkinsons Disease
Parkinsons disease is a progressive neurological disorder that causes a gradual loss of muscle control. Although the disorder generally occurs in elderly people, it is occasionally seen in younger adults. In fact, roughly 5-to-10% of all Parkinsons disease cases occur before the age of 50.
Parkinsons disease usually evolves in five distinct stages:
It is important to remember that Parkinsons disease affects each patient differently. While some may remain in Stage 1 for years, others advance quickly. Some people might even skip one more stage of disease progression entirely.
There is no cure for Parkinsons disease, but prescription medications, deep brain stimulation, and certain therapies will usually alleviate or lessen symptoms. A healthy diet and regular exercise can also help people with Parkinsons disease improve muscle strength and balance.
While Parkinsons disease itself is not fatal, its debilitating effects do increase the potential for deadly complications. Because swallowing issues may cause aspiration of food or liquids into their lungs, pneumonia is the most common cause of death among people with Parkinsons disease. Worsening mobility and balance problems also increase their risk for fatal falls.
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What Is Parkinsons Disease
Parkinsonâs disease is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinsonâs disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.
Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesnât get communicated. By the time a person starts to experience motor symptoms of Parkinsonâs, theyâve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.
Caremap For Advanced Parkinsons Disease
One of the valuable tools the Parkinsons Foundation provides is called CareMap. Think of it as a how-to guide to coping with problems that may arise as a result of advanced Parkinsons.
There are videos to help with dressing, eating, using the restroom, and a ton more, as well as caregiver stories and tips.
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Parkinson’s Care At Home
At The Good Care Group, we have been supporting people to live a purposeful and meaningful life with Parkinsons disease for over 10 years. We know how worrying it can be for families when faced with the reality that a loved one is living with the condition. However, a Parkinsons diagnosis does not mean you cannot live well with the disease, maintaining as much independence as possible with the right level of care and support.
Getting Dressed With Parkinson’s Disease
- Get dressed while sitting in a chair that has armrests — this will help you keep your balance.
- Roll from side to side to get pants over your hips. You can do this while sitting in a chair or lying down on your bed.
- Wear clothes that are loose fitting and have elastic waistbands.
- Choose wrap-around clothing instead of the pullover type. Also choose clothing that opens in the front, not the back so you don’t have to reach behind you.
- Wear clothing with large, flat buttons, zippers, or Velcro closures.
- Use a button hook to button clothing.
- Use a dressing stick if you have shoulder weakness to get your coat or shirt on or off.
- Use a zipper pull or attach a leather loop on the end of the zipper to zip pants or jackets.
- Wear slip-on shoes or buy elastic shoelaces that allow you to slip your shoes on and off without untying the laces. Use devices such as a sock donner and long-handled shoehorn for additional assistance.
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