How To Care for a Loved One with Parkinson's Disease

Parkinson's disease is one of the most common and dreaded diseases among older adults. Nearly one million people in the United States are living with Parkinson’s disease today, and this number is expected to rise to 1.2 million by 2030.

As Parkinson’s becomes more widespread, family caregivers are taking on unique responsibilities. We all want the best for our loved ones, but it's not always clear how to provide the right kind of support.

In this article, we'll discuss what Parkinson's Disease is, what to expect as the disease progresses, and how you can offer compassionate, effective care for someone living with Parkinson's.  

What Is Parkinson’s Disease?

Parkinson’s disease (PD) is a neurodegenerative condition that affects the nervous system. Parkinson's gets progressively worse with time and age, causing debilitating movement difficulties. 

The causes of the disease are unknown; however, scientists know it involves a loss of neurons associated with dopamine. This decrease in dopamine leads to PD symptoms like difficulty with speech and movement. 

Parkinson's is also correlated with the presence of Lewy bodies, a type of protein found in Parkinson's, and some forms of dementia. These clumps of protein are hard to break down and prevent vital connections from happening within the brain, which eventually leads to cell death.  

Symptoms of Parkinson’s Disease

Symptoms of Parkinson's disease usually develop slowly over time. Symptoms are both cognitive and physical, impacting almost every area of life and eventually leading to a need for long-term care.

Physical symptoms include:

• Tremors: This is one of the most recognizable signs of PD, where hands shake when moving and resting, making fine motor functions more difficult.

• Stiffness & slow movements (Bradykinesia): Movements become slower, stiffer, and more deliberate.

• Increased fall risks and decreased balance: Parkinson's often leads to difficulty walking and balancing. People may also have trouble with normal body movements, like swinging their arms when walking.

• Difficulty with facial movements: Smiling, blinking, and other expressions may become difficult. Eating, chewing, drinking, or swallowing may also be difficult, leading to slurred speech.

• Difficulty with bladder or bowel movements: Parkinson's can cause bladder movements to feel more urgent and decrease overall bowel movements, leading to constipation.

In addition to physical symptoms, some people with Parkinson's also experience cognitive and emotional symptoms such as depression, anxiety, brain fog, memory problems, sleep disturbances, and other mental health struggles. 

Risk Factors for Parkinson’s Disease

Scientists are not sure what causes Parkinson's disease. However, there are a few factors that can put individuals more at risk:

• Age: Individuals over the age of 60 are more likely to develop Parkinson's than younger individuals.

• Gender: Men have a higher rate of Parkinson's than women; the cause of this is unknown.

• Genetics: About 10-20% of Parkinson's cases are linked to genetics. Those with a family history may be more likely to develop Parkinson's because of changes to DNA.

• Environmental factors: People who have prolonged exposure to heavy metals and toxic chemicals like pesticides or herbicides may be more likely to develop PD.

• Head trauma: Traumatic brain injuries may put individuals at higher risk of developing Parkinson's disease.

Parkinson’s Treatment Options

There is no cure for Parkinson's disease. However, various treatment options are available to help manage symptoms and improve quality of life.

These treatments include a combination of:

• Medications.

• Lifestyle adjustments.

• Surgical interventions (for advanced cases).

Medications are the most common way to treat Parkinson's. They don't cure Parkinson's but can help relieve symptoms such as tremors, stiffness, and slowed movement.

The most frequently prescribed drugs aim to increase dopamine levels as an attempt to encourage dopamine-producing neurons and help individuals regain movement.

Lifestyle adjustments can also help treat the symptoms of Parkinson's disease. Specific exercises and activities can help preserve and maintain independence. Changes to diet and eating habits can help with medication absorption and increase energy levels.

Another treatment option is surgical intervention. This option is only for those with advanced Parkinson's who are no longer responding well to medication options.

The most common procedure is Deep Brain Stimulation (DBS), which involves implanting electrodes into specific parts of the brain that control movement. These electrodes deliver electrical impulses that help regulate abnormal brain activity.

Everyone responds differently to Parkinson's treatments. Some may respond really well to one drug but not another, and others may need surgery to improve their quality of life significantly.

The combination of treatment methods used will depend on the following:

• Stage of the disease.

• Severity of symptoms.

• Responsiveness to specific treatments.

• Overall health.

Doctors will work with you and your loved one to determine the best treatment plan on an ongoing basis.      

How To Take Care of Someone with Parkinson’s Disease

When someone you love is living with Parkinson’s disease, daily life can change in ways you never imagined. As the disease progresses, so do their care needs.  

While early stages may only need minor adjustments, the advanced stages of Parkinson’s can demand substantial, specialized long-term care services.

Parkinson’s affects both movement and cognitive abilities. That means care needs are often twofold: physical support and cognitive support.

Over time, help with activities of daily living (ADLs) like bathing, dressing, and eating will become more necessary. At the same time, challenges like memory problems, emotional changes, and difficulty communicating can make caregiving more complex.

Many people with Parkinson’s initially benefit from in-home care, especially when combined with physical therapy and occupational therapy. Home health aides can assist with daily routines while therapists focus on maintaining mobility, balance, and strength.

Other changes like home modifications and lifestyle adjustments can help further extend the time someone can safely stay at home. However, Parkinson's is a progressive disease.

As it advances, even the best home care arrangements may no longer be enough. Many families eventually transition their loved ones into an assisted living community, memory care unit, or skilled nursing facility, where round-the-clock help with personal care, medication management, and physical safety is available.

According to the LTC News Cost of Care Calculator, the average cost for skilled nursing care now exceeds $125,000 annually in most states.

Traditional health insurance and Medicare will only pay for a limited amount of skilled care, making planning for long-term care more crucial than ever before.

In addition to professional help, there are several things you can do at home and on your own to make caregiving for Parkinson's easier and take care of yourself in the meantime:

1. Education. 

2. Utilizing your care team and support network. 

3. Lifestyle, ADLs, and diet changes. 

4. Home modifications and adjustments. 

5. Prioritize your relationship.

6. Local resources for family caregivers. 

1. Learn About Parkinson’s Disease

As with many progressive neurological conditions, Parkinson's affects everyone differently, meaning a treatment that works for one person may not work for another. 

Understanding the symptoms, treatment options, and disease progression can help you stay prepared, make informed decisions, and offer more effective support. 

Involving your loved one in the learning process can help give them a sense of control and encourage active participation in their care plan.

Education can also help doctor visits feel less overwhelming. Familiarity with Parkinson’s terminology and treatment options helps you ask the right questions, leading to more compassionate, coordinated, and personalized care. 

2. Utilize Professional Help

A coordinated care team of doctors, therapists, specialists, and caregivers is necessary to treat Parkinson's. Common medical professionals that help with Parkinson’s include: 

• Primary care physicians

• Speech therapists, physical therapists, and occupational therapists

• Dietitians

• Social workers

One mistake people make is not asking enough questions. Your loved one's healthcare team is there to help and give you the best care possible. However, they're not in the room with your loved one every day. 

This is why it's important for you to speak up, share observations, and ask questions. Let the care team know what has and hasn't been working. Open communication and feedback help guide treatment decisions and ensure your loved one receives treatments that are actually working to better their condition. 

Your loved one will get the most value from you and the care team engaging in the plan of care. Your insights can make a real difference and help inform doctors about the symptoms and problems that only a family caregiver can see. 

3. Activities of Daily Living, Diet, & Lifestyle

Many people living with Parkinson's find it difficult to complete activities of daily living (ADLs), such as bathing, dressing, transferring, or eating on their own. 

However, Parkinson's doesn't have to mean the end of your loved one's independence.

There are ways to help prevent Parkinson's disease from interfering with daily life, even if it means making some changes. 

For example, you could switch out your loved one's clothing to make it easier for them to get dressed on their own. Simple changes can go a long way:

• Swap button-down shirts for Velcro. (You can even keep the button on the front, but just for show, with Velcro underneath.)

• Swap tight-fitting clothing for stretchy, loose-fitting, breathable materials like cotton.

• Swap dress shoes or rubber soles for slip-ons or more flexible materials.

One of the hardest lifestyle adjustments to help with Parkinson's is diet. A balanced diet can reduce the severity of symptoms and help medications work better. 

A common Parkinson's drug, Levodopa, works best when taken on an empty stomach. A diet high in protein can prohibit Levodopa from absorbing well or quickly.  

Here are some dietary tips to help with Parkinson's:

• High fiber: Add whole grains, vegetables, and fruits to your diet. Higher fiber intake can help with constipation, a common problem in Parkinson's.

• High calcium: Calcium-rich foods like dairy and cheese can help prevent osteoporosis.

• Avoid sugars, fats, high cholesterol, and empty carbs: Junk foods exacerbate the symptoms of Parkinson's and can be detrimental to those already in declining health. PD alone is difficult to cope with; you don't need junk foods, accelerating health decline.

• Avoid crumbly foods: Dry, crumbly crackers can get caught in the throat and be harder to swallow.

• Drink lots of water: Hydration is important for everyone, but those with Parkinson's are at an increased risk of dehydration, so it is essential to stay in check.

In addition to a healthy diet and support with daily activities, certain lifestyle changes can be beneficial for individuals living with Parkinson’s disease.

Some important lifestyle changes include:

• Practice regular exercise: Physical activities like walking, stretching, or yoga can help individuals retain their range of motion as Parkinson's progresses.

• Participate in low-stress hobbies: Staying committed to passions and hobbies as you age can be tough, especially with a debilitating illness. However, mental stimulation, relaxation, and emotional health improvements are invaluable.

• Maintain a consistent sleep schedule: Parkinson’s can affect sleep patterns, so going to bed and waking up at the same time each day, avoiding caffeine before bed, and creating a calming bedtime routine can promote better rest.

• Social engagement: Stay in touch with friends, family, neighbors, and community members. Social connections not only help our emotional health, but they also give those with PD regular practice talking, smiling, and using their facial muscles, which often suffer due to the disease.

• Establish a daily routine: Having structure can reduce anxiety, improve time management, and support memory and concentration, making daily life more manageable.

4. Home Modifications

Sometimes, caregiving isn't about providing care but preventing accidents and increasing independence. One of the best ways to do this is through home modifications.

Home modifications can be as simple as rearranging furniture or as complex as redoing a bathroom. You can make your loved one's home safer and help create an environment where someone with mobility issues can thrive.

Here's a list of possible home modifications to help:

• Install grab bars and railings: These provide crucial support for balance and mobility, helping older adults navigate stairs and transitions more safely and independently.

• Replace tubs with walk-in showers: Tubs can be difficult and dangerous to enter. Walk-in showers, especially with seating, make bathing safer and more comfortable.

• Set up emergency alert systems: Install call buttons, speakers, or wearable devices to ensure help is accessible during emergencies. You can set this up so the system calls family, neighbors, or emergency services directly.

• Simplify phone access: Enlarge app icons, remove unnecessary apps or contacts, and add emergency contacts to speed dial. Consider adding medical and health tracking apps to keep track of medications and quickly contact nurses, doctors, and other healthcare professionals.

• Rearrange furniture for safety: Declutter and adjust furniture layout to create clear, open paths. Consider switching the couch or chairs if one is too high or too low.

• Improve lighting: Brighten up dim areas, especially walkways. Motion-sensor night lights can reduce the risk of nighttime falls.

• Add non-slip surfaces: Use rugs with non-slip backing in high-risk areas like bathrooms and kitchens. 

• Make kitchen items accessible: Move frequently used items to counter-height shelves to avoid reaching or bending, reducing strain and fall risk.

You can also do a few quick things to help increase safety, such as checking carbon monoxide and smoke detectors.

Other simple fixes involve avoiding space heaters and electric blankets, which can easily become fire hazards in the wrong circumstances. Some hair products, like a curling iron or razor may not be safe for those with tremors or decreased stability. 

5. Maintaining a Healthy Relationship

When our loved one's care needs become more advanced, it can be hard to find time to enjoy their company without involving their care needs.

However, even with these needs, it's important to remember that you're family first. Your relationship with your loved one is more important than being there for them 100% of the time. When the caregiving job becomes overwhelming, it may be time to consider professional care, even if your loved one is against the idea. 

Caregiver burnout is a real thing; it happens when you're so overwhelmed by the combination of your responsibilities that you start to experience depression, lack of motivation, or resentment towards your loved one.  

This is a serious matter, and when you feel burnt out, it's important to be honest about exactly how much care and financial support you can provide for your loved one and fill the gaps with professional help or the help of other family and friends. 

The most important thing is your relationship and spending quality time with your loved one in their golden years. 

6. Resources for Family Caregivers

There are an estimated 53 million family caregivers in the United States, and many organizations and programs are working to ensure these caregivers have access to the help they need.

There are a few major types of resources for family caregivers, including:

• Respite care services: This is when a professional caregiver temporarily steps in to take over caregiving duties, giving family caregivers a much-needed break. Respite care can happen at a home where a caregiver comes directly to your loved one or at an adult day care center where you drop off a loved one for care during the day. Several organizations can help you arrange respite care services, such as a local Area Agency on Aging (AAA).

• Caregiver support groups: Many communities and organizations offer support groups to help caregivers connect. Talking with those who have shared experiences can be incredibly therapeutic.

• Community services: There may be local organizations dedicated to helping caregivers. This could include respite care providers, access to transportation services or home delivered meals, and workshops and other educational resources aimed at helping caregivers.

• Get paid for family caregiving: Getting paid for caregiving can be tricky, but some Medicaid-associated programs, like self-directed services, allow care recipients to hire family members as paid caregivers. Other local programs may also be able to provide supplemental income or financial support.

Living Well with Parkinson’s Disease

Parkinson's disease is a degenerative disease that makes it difficult to move and think. Caring for someone with Parkinson's is incredibly challenging and complex; each individual responds well to different treatment measures. 

The right combination of support, education, lifestyle changes, and home modifications can make family caregiving for someone with Parkinson's easier. 

However, long-term informal caregiving isn't viable for everyone. For those looking for professional care options, LTC News can help. LTC News's Long-Term Care Directory contains thousands of high-quality caregivers and facilities. 

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This tool can help you find and compare options in your area so you can find a professional you trust to help your loved one. In addition, LTC News also has resources on caregiving and long-term care: 

• Managing Caregiver Burnout: Causes, Symptoms and Solutions – Caregiver burnout happens when responsibilities from work, caregiving, and family pile up leading to overwhelm, stress, and even depression. This article explains how to recognize and cope with caregiver burnout. 

• How To Balance Caregiving Responsibilities and a Career – This article explores ways to manage a career alongside caregiving responsibilities. Some of the most important parts of balancing involve being honest with what you can and can’t handle and having open communication about your caregiving responsibilities. 

• How To Pay For Long-Term Care – This article offers solutions to plan and pay for long-term care needs. Long-term care is not covered under traditional health insurance, so it’s important to have another way to cover care costs.