Parkinson's Care
Home » Blog » Parkinson’s Care

Parkinson’s Care

How to Care for Parkinson's Disease Patients

The National Institute on Aging defines Parkinson’s Disease (PD) as a neurological disorder that’s marked by tremors, stiffness, mobility issues, and coordination difficulties. It can also lead to Parkinson’s dementia, in which the patient has cognitive and memory decline. Most people who develop the disease are in their early 60s and older, though there are many cases reported of early onset.

What Are the Early Signs of PD?

Parkinson’s Disease can effect people differently. While these are the early signs of the disease, some people may not present with every one of them. The symptoms are:

  • Slight hand tremors
  • Constantly rubbing the thumb against the index finger (called pill-rolling)
  • Small, cramped handwriting (micrographia)
  • Difficulty with balance and walking
  • Sleep Issues
  • Slow Bowels (Constipation)
  • Loss of Smell
  • Flat Affect (Parkinson’s mask)
  • Stooped Posture
  • Slow Movement
  • Dizziness or Fainting
  • Depression
  • Anxiety
  • Hallucinations

What Are the Symptoms of PD?

As with its early signs, the symptoms of Parkinson’s Disease may vary according to the person. Some patients may experience mild symptoms, while others have a greater severity. The disease usually affects one side of the body worse than the other. These are the general symptoms of Parkinson’s that a neurologist will check:

  • Tremors in the hands and fingers
  • Head tremors – Tremors in the head cause abnormal movements. When the head twitches from side to side, it’s called the no-no tremor. When the tremors cause the head to shake up and down, it’s called the yes-yes tremor.
  • Rigid, stiff muscles, especially the arms and legs, making movement and walking difficult
  • Impaired movements that are usually natural, like blinking or swinging the arms while walking
  • Digestive issues, usually constipation because of slower movement in the bowels
  • Swallowing difficulties/choking risks
  • Flat affect – The patient lacks any emotional facial expressions, or their faces aren’t congruent with their emotions. It’s commonly called a Parkinson’s mask.
  • Speech Changes – The cadence becomes slower, and words are often softer and slurred.
  • Ambulation and voluntary movement are slower and more complex

What Are the Main Causes of PD?

Johns Hopkins Medicine explains that experts haven’t pinpointed a definite cause of PD. However, most believe that it’s probably a mixture of genetic and environmental factors. Whatever the reason, the disease affects dopamine levels in the brain. Most cases of PD are idiopathic, which means the specialist can’t identify any reason behind the disease.

Can PD Be Inherited?

The Parkinson’s Foundation states that it’s possible to inherit the disease genetically. At least 10 to 15 percent of diagnosed PD patients could be traced genetically; however, most cases have no genetic roots.

What to Expect Living With PD?

For now, there are no cures for people who’ve been diagnosed with PD. The good news is that the symptoms can be effectively managed through a healthy lifestyle, medication, and possible procedures. Patients and their families learn how to cope with PD symptoms and create a new normal. These coping tools may include:

  • Continuing education for identifying and managing PD symptoms
  • Fitness classes and/or physical therapy tailored for the patient’s needs
  • Consultation with a registered dietitian for healthy menu ideas that are geared for PD patients
  • Prescription medication that targets PD symptoms. Although they don’t provide a cure, they may help manage and slow the progression of the disease.
  • Working with a health care provider and team who specializes in PD diagnosis and care
  • As the disease progresses, patients usually require disability benefits. These can be through private disability insurance or Social Security. Legal advisors can help patients and their families navigate the system and discuss a plan best for them.

How Does Parkinson’s Effect the Daily Life of Parkinson’s Patients?

Those who’ve been diagnosed with PD often have a lot of questions and challenges for the future. Everyday activities for daily living (ADLs) become slower and more complex. Patients are usually entirely reliant on assistance in the middle and final stages. These are the five stages of PD and how patients are traditionally affected each day.

Stage 1: This is when patients have noticed enough red flags to be diagnosed with PD. Tremors are usually mild and usually affect just one side of the body. Working with the hands may become more complex.

Stage 2: The initial symptoms worsen and usually affect both sides of the patient’s body. Balance, posture, and ambulation are noticeably impaired. While PD patients can manage most things independently in this stage, it takes longer and is more challenging.

Stage 3: When patients are midway through the course of the disease, ambulation and movements are even more difficult. Patients often lose their balance and are at risk for trips and falls. They require more assistance than usual for ADLs.

Stage 4: Patients in this PD stage experience severe mobility issues and need standing, sitting, and walking assistance. At this point, they usually require assistance with ADLs, and it’s unsafe for them to live by themselves.

Stage 5: Advanced stage PD is when patients are completely debilitated by their symptoms. The muscles are so rigid that a wheelchair must transport the patient. Tremors are perpetual, and the patient is often bedridden due to weakness. In addition to limited speech, the patient may experience mental and cognitive issues because of Parkinson’s dementia. At this stage, the patient requires 24/7 care.

How Does PD Affect Family Caregivers

Caring for a family member with PD is a labor of love. It can be heartbreaking and emotionally draining. In the final stages, caregivers may experience burnout, depression, and anxiety because of the constant care. According to the Parkinson’s Foundation, family caregivers are susceptible to health issues themselves and should be aware of these signs:

  • Too busy and stressed to care about their own physical and mental health
  • A deep feeling of isolation with the impression that nobody understands
  • Increased anxiety and worry about the future
  • Mixed feelings of helplessness, anger, and guilt
  • Profound exhaustion that isn’t relieved by sleep
  • Increased stress that manifests as physical aches and pains
  • Inability to make decisions or to focus
  • Bitter feelings against other family members who aren’t helping as much
  • Deep depression and feelings of hopelessness
  • Tendency to self-medicate with substance abuse, i.e., tobacco, alcohol, drugs

How to Speak to Someone with PD?

Just because someone’s movement and speech are impaired by PD doesn’t mean they don’t understand and feel emotion. They need loving support and the presence of their family and friends. It’s best to maintain good eye contact and be patient as the person speaks slowly. Offer gentle cues and “be with” the patient if dementia makes their facts a bit skewed. Don’t ever argue with them as this can only add to the confusion and cause agitation.

What is Parkinson’s Care?

People diagnosed with PD and their families need a robust support system to help them travel this difficult journey. Parkinson’s care usually includes general neurologists, movement specialists, nurses, therapists, and non-medical support. These professionals work as a team to manage the patient’s symptoms and provide education and support as needed.

Can Parkinson’s Disease be Treated?

There may not be a cure for PD now, but the symptoms can be effectively managed to slow the disease progression. These are some common PD treatments according to the Parkinson’s Foundation.

  • Prescriptions targeting tremors
  • Physical and occupational therapy to address mobility issues
  • Surgical treatment options, such as deep brain stimulation
  • Complementary therapies like massage, yoga, and acupuncture
  • Medical marijuana by prescription

Can PD Be Transmitted?

While PD can be genetically transmitted, it is a neurological disease that isn’t contagious.

What Are the Parkinson’s Care Settings?

There are several care options for PD patients and their families. Each one depends on the patient’s needs and budget, and they are available in most areas. Some of the services are available in the patient’s home, such as home care, home health, and hospice.

Others are based in long-term facilities like skilled nursing facilities, assisted living, inpatient care, and PD adult daycare services. Statistics show that at least 25 percent of PD patients in America reside in facilities due to their ongoing care needs.

1. Care Home for Parkinson’s Patients

A Parkinson’s care home (also known as Parkinson’s Care Facility) can be a skilled nursing facility specializing in PD care. Depending on the facility, patients can have private or shared rooms. There are common areas for dining and activities. At least one registered nurse is on duty around the clock, and other staff help patients with their ADLs.

Services Provided:

  • One-on-one skilled nursing
  • Fall prevention
  • Meal preparation
  • Assistance with ADLs
  • Housekeeping
  • Non-medical Transportation
  • Companionship/Activities

Professional Staff Involved:

  • Doctors
  • Nurses (RN/LPN/STNA)
  • Registered Dietitian
  • Physical/Speech Therapists
  • Social Workers
  • Activity Coordinator/Trained Volunteers
  • Spiritual Care Staff

Pros:

  • 24/7 medical attention
  • Companionship
  • Help with ADLs

Cons:

  • Can be expensive
  • Some may feel lonely and isolated from their loved ones in a facility, so they prefer to be home.

Wow Is It Paid?

Average Cost: $$$

Per Medicare, these payment options are the same as for skilled nursing facilities.

Long-term Care Insurance
Medicaid
Personal Resources

2. Parkinson’s Daycare

These facilities offer care for PD patients during the day while their families are working. The cost of PD daycare  depends on the provided services, per a study. It’s an ideal service when patients can’t be safely left alone during the day. The staff provides appropriate activities and social interactions for each patient. They usually serve a meal and snacks and will occasionally have fun outings.

Services Provided:

  • Socialization
  • Exercise
  • Fun activities in a safe environment
  • Health screening
  • Meals
  • Transportation

Professional Staff Involved:

  • Facility director
  • Registered nurse always on duty
  • Activity director and trained staff
  • Social worker

Pros:

  • Offers patient socialization in a safe environment
  • It gives families a break as needed

Cons:

  • Limited medical services
  • Limited hours during the day

How Is It Paid?

Average Cost: $$

According to Senior Advice, these are some PD daycare:

Medicaid
VA Benefits
Long-term Care Insurance
Private Resources

3. Nursing Home Care

Also called a skilled nursing home, these are for patients who can’t live alone and require 24/7 professional nursing care. They have the same outline as PD care homes, except residents may have one of many debilities.

Services Provided:

  • One-on-one skilled nursing
  • Fall prevention
  • Meal preparation
  • Assistance with ADLs
  • Housekeeping
  • Non-medical Transportation
  • Companionship/Activities

Professional Staff Involved

  • Doctors
  • Nurses (RN/LPN/STNA)
  • Registered Dietitian
  • Physical/Speech Therapists
  • Social Workers
  • Activity Coordinator/Trained Volunteers
  • Spiritual Care Staff

Pros:

  • 24/7 medical attention
  • Companionship
  • Help with ADLs

Cons:

  • Can be expensive
  • Some patients may feel lonely and isolated from family and prefer to stay home.

 

How Is It Paid?

Average Cost: $$$$

According to guidelines published by Medicare, here are some payment options for a skilled nursing facility:

  • Long-term Care Insurance
  • Medicaid
  • Personal Resources

4. Assisted Living Facility

This option is for patients who can live independently but still require help with their ADLs. Although the amenities vary by facility, most assisted living places provide individual apartments. These usually have a small kitchen, bedroom, and living room. Some higher-end facilities offer small cottages for their residents, but these come at a premium.

Services Provided:

  • Basic nursing care as needed
  • Prescription maintenance
  • Assistance with ADLs
  • Light Housekeeping
  • Non-medical Transportation
  • Companionship/Activities

Professional Staff Involved:

  • Facility Manager
  • Nursing staff: RN/CNAs
  • Cleaning staff
  • Activity Director/Staff

Pros:

  • Medical help as needed
  • Assistance with ADLs
  • Independent living as much as possible

Cons:

  • Depending on the place, these can be quite expensive
  • Medicare will not pay for any long-term care/daycare
  • Limited medical assistance

How Is It Paid?

Average Cost: $$$$$

Here are some options discussed by Caring:

  • VA benefits
  • Life Insurance Policies
  • Long-term Care Insurance
  • Reverse Mortgages
  • Bridge Loans
  • Family Resources
  • Medicaid/SSI
  • Renting out your private residence

5. Parkinson’s Inpatient Care

Most skilled nursing facilities and some hospitals offer temporary inpatient care for acute symptom management. When PD patients have symptoms out of control, the doctor may order temporary professional nursing care in a hospital or skilled nursing facility. As soon as the symptoms are resolved, the patient can go back to wherever they call home.

Services Provided:

  • One-on-one skilled nursing
  • Fall prevention
  • Meal preparation
  • Assistance with ADLs
  • Housekeeping
  • Non-medical Transportation
  • Companionship/Activities

Professional Staff Involved:

  • Doctors
  • Nurses (RN/LPN/STNA)
  • Registered Dietitian
  • Physical/Speech Therapists
  • Social Workers
  • Activity Coordinator/Trained Volunteers
  • Spiritual Care Staff

Pros:

  • 24/7 medical attention
  • Companionship
  • Help with ADLs

Cons:

  • Can be expensive
  • Can only be used for a limited time

How Is It Paid?

Average Cost: $$$$

According to an article published by Medical News Today, these are the payment options:

  • Medicare Part A will only pay for the first 90 days, and the patient has a co-payment. After this period, you are responsible for all costs.
  • Medicaid
  • Private Insurance/Private Pay

6. Home Care for Parkinson’s Patients

Parkinson’s home care services are useful for those patients who need help with the activities of daily living like toileting, bathing, dressing, eating, and daily chores like cleaning, transportation, and socialization. It is provided in the patient’s home and doesn’t require a doctor’s order.

Services Provided:

  • Meal preparation
  • Assistance with ADLs
  • Housekeeping
  • Non-medical Transportation
  • Companionship/Activities

Professional Staff Involved:

  • Home Care Agency Director
  • CNAs
  • Social worker as needed

Pros:

  • Services provided in patient’s home
  • Patients can live more independently
  • Cheaper alternative to long-term care

Cons:

Usually doesn’t offer medical treatment

How Is It Paid?

Average Cost: $$$

These are some options to pay for PD home care, per an article published by AARP:

  • Private pay: life insurance, annuities, long-term care insurance, loans
  • Medicare on a limited basis
  • Medicaid
  • Veteran’s Programs
  • Tax Deductions
  • Programs of All-Inclusive Care for the Elderly (PACE)

9. Home Health Care for Parkinson’s Disease

Sometimes, patients require skilled nursing for acute symptoms in their homes. According to doctors’ orders, home health care provides temporary help. It may be for symptoms unrelated to the PD, such as wound care acute symptoms from another disorder.

Services Provides:

  • One-on-one skilled nursing in patient’s home
  • Fall prevention
  • Assistance with ADLS
  • Non-medical Transportation
  • Companionship/Activities

Professional Staff Involved:

  • Nurses (RN/LPN/STNA)
  • Physical/Speech Therapists
  • Social Workers

Pros:

  • Skilled nursing at home
  • The patient’s doctor can continue care as needed

Cons: Medicare doesn’t always pay for these services.

 

How Is It Paid?

Average Cost: $$$

According to Aging Care, these are the payment options:

  • Private insurance
  • Medigap, which is Medicare supplemental insurance
  • Long-term care insurance
  • VA benefits
  • Medicaid

10. Parkinson’s Memory Care

A memory care facility provides most of the same services as a skilled nursing facility. However, they concentrate on cognitive decline disorders and may have patients who don’t require 24/7 nursing services. Other than that, the descriptions are the same.

11. Hospice Care for Parkinson’s

Many people with advanced PD receive a terminal diagnosis of six months or less and are eligible for hospice services. These services are available in a private residence or wherever the patient calls home. Hospice goals are to provide comfort and support to patients and their families within the patient’s limited life expectancy.

Services Provided:

  • One-on-one skilled nursing as needed
  • Fall prevention
  • Assistance with ADLs
  • Grief support
  • Support for end-of-life issues
  • Companionship

Professional Staff Involved:

  • Hospice medical director and patient’s doctor
  • Nurses (RN/LPN/STNA)
  • Physical/Speech Therapists (for palliative care)
  • Social Workers
  • Grief Counselors
  • Spiritual Care Coordinators
    Trained volunteers for companionship

Pros:

  • Comfort care as needed
  • Help with ADLs
  • Comfort care wherever the patient lives
  • Paid benefit from Medicare

How Is It Paid?

Average Cost: $

According to the Hospice Foundation of America, hospice is a paid Medicare benefit. Medicaid can pay for nominal prescription co-pay

13. Parkinson’s Respite Care

Respite care is provided for hospice patients in a skilled nursing facility or hospital when family caregivers need a break. It lasts for five consecutive days and is a paid Medicare hospice benefit, per Medicare Interactive.

Respite service can be requested once every 90 days. The services are the same as in a skilled nursing facility, plus they include assistance from a hospice provider.

Questions to Ask Parkinson’s Care Provider Before Signing on

Before signing anyone with a facility, it’s important to ask the following questions:

  1. Is the facility state-licensed?
  2. How long has it been in business?
  3. Is it Medicare/Medicaid Approved?
  4. What services are offered?
  5. Are all staff licensed and experienced?
  6. What are the state inspection ratings?
  7. Are care plans individualized?
  8. Is a registered nurse available around the clock?
  9. Will the staff keep in regular contact with the patient and family?

Sources

1. Parkinson’s disease – National Institute on Aging

2. 10 Early Signs – Parkinson’s Foundation

3. Parkinson’s Disease Risk Factors and Causes – Hopkins Medicine

4. Genetics & Parkinson’s – Parkinson’s Foundation

5. Caring for the Care Partner – Parkinson’s Foundation

6. Treatment – Parkinson’s Foundation

7. How can I pay for nursing home care? – Medicare.gov

8. How To Pay for Adult Daycare – SeniorAdvice

9. Parkinson’s Disease and Assisted Living – Caring.com

Similar Posts