Long-Term Care for Parkinson’s Disease
ContentsWhat Is Parkinson’s Disease? Signs Of Parkinson’s Disease Treatment Of Parkinson’s Disease Care Needs With Parkinson’s Disease Selecting Healthcare Professionals For Parkinson’s Disease Transitioning Into Long-Term Care With Parkinson’s Disease Long-Term Care Options For Parkinson’s Disease Selecting A Long-Term Care Facility For Parkinson’s Disease Effects Of Parkinson’s Disease On Caregivers Financial Considerations With Parkinson’s Disease Legal Considerations With Parkinson’s Disease Support Organizations For Parkinson’s Disease FAQs About Parkinson’s Disease
Parkinson's disease (Parkinson's disease) is a nervous system disorder of the brain that affects movement. The disease is more commonly seen in older adults. Men are also 1.5 times more likely to develop Parkinson's disease than women. The disorder often leads to the need for long-term care, particularly with Parkinson’s disease progression. After reading this guide, you will have a better understanding of the stages of Parkinson's disease and the care needs and long-term care options available to those who have this disease.
What Is Parkinson’s Disease?
Parkinson's disease is a disease of the brain that affects the muscles of the body. The cause of the disease is unknown and there is no cure. Parkinson’s disease progression means that symptoms get worse over time. It often begins as a subtle hand tremor or it may begin with increased muscle stiffness or slower than normal movement.
As an individual becomes weaker and unable to care for themselves, family caregivers often help with care needs so the person may remain independent as long as possible. However, rigid muscles that prevent the individual from mobilizing safely or a serious fall may result in the need for long-term care.
Signs Of Parkinson’s Disease
Parkinson's disease symptoms are categorized as either motor symptoms or non-motor symptoms. Although Parkinson's disease patients share common symptoms, each person with the disease will have some symptoms that are more dominant than others.
There are five main Parkinson’s disease symptoms that have been identified which are also used by doctors to diagnose the disease although all five Parkinson’s symptoms do not need to be present to make a diagnosis. Symptoms of Parkinson’s disease include:
- Bradykinesia (slow movement)
- Muscle rigidity
- Tremors or shaking
- Unstable posture (poor balance)
- Problems walking
Non-motor symptoms may be common as well but may be harder for others to notice, especially with early Parkinson’s disease. These Parkinson’s disease symptoms may include:
- Changes in mood (anxiety, irritability, depression)
- Cognitive difficulties including problems with memory, reduced attention span, and personality changes
- Delusions and hallucinations
- Feeling full eating little food
- Oily skin
- Profuse sweating (even little physical activity)
- Postural hypotension (blood pressure rapidly decreases upon standing)
- Sleep problems
- Vision problems
Sexual dysfunction in Parkinson's disease is common and affects men more often than women. Sexual dysfunction occurs with Parkinson's disease due to a loss of dopamine, the main neurochemical responsible for feelings of reward and pleasure in the brain.
Treatment Of Parkinson’s Disease
Treatment of the stages of Parkinson's disease is highly individualized and dependent on the symptoms one is experiencing and their severity. Treating Parkinson’s disease includes medications and sometimes a form of surgery known as deep brain stimulation (DBS).
It is common for people to take a variety of medications to manage Parkinson’s symptoms. Finding the right Parkinson’s medications, dosages, schedule, and formulations (such as pill vs. patch) is a process that requires some time and observation of different medication effects on symptoms.
Parkinson’s disease medication is available to treat both motor and non-motor symptoms. It is important to point out that no medication is currently available to cure the disease. The goal of medication treatment is to help reduce or control symptoms thereby improving the quality of life for an individual.
Deep Brain Stimulation (DBS)
DBS is a type of surgical procedure in which a battery-operated device called an impulse generator battery (IPG) is implanted in the abdomen or under the collarbone. The device is then connected to electrodes which are attached to a specific area of the brain that corresponds with specific symptoms such as tremor, stiffness, and slowness.
It is usually performed on individuals who have had Parkinson's disease for at least 5 years and who have symptoms that are managed with medication most of the time. DBS is used to treat these symptoms when medication does not consistently work.
Although specialists are not exactly sure why this technique is effective, it is thought that this electrical stimulation of the brain may help regulate uncoordinated signals in the brain that are causing these symptoms.
Interestingly, this procedure only appears to be effective for reducing symptoms that were previously improving with medication. And the opposite is also true: symptoms that do not get better with medication usually do not respond to deep brain stimulation.
Deep brain stimulation is the most common surgical way of treating Parkinson’s diseases but it is not recommended for all people with the disease. For example, deep brain stimulation may make thinking or memory problems worse so it is not recommended for people with dementia.
The knowledge and assistance of a physical therapist who has experience working with Parkinson's disease patients is invaluable. Physical therapists can help an individual manage specific symptoms and learn to keep moving safely and independently for as long as possible. A physical therapist may help an individual with:
- Standing from a seated position
- Balance and posture
- Preventing falls
- Pain management
Care Needs With Parkinson’s Disease
There are several important care needs of individuals with Parkinson's disease related to swallowing difficulties, speech problems, cognition issues and difficulties with activities of daily living (ADLs).
Swallowing difficulties (also called dysphagia) usually develop later in the disease.This may cause the individual to drool or have food spill out of their mouth when they are eating. These individuals also have a high risk of choking because of difficulty using the throat muscles to swallow.
Aspiration pneumonia may also occur if an individual inhales some of the food, fluid, or saliva they choke on. A speech-language pathologist may be able to help individuals with Parkinson's disease who are having problems swallowing.
An individual’s diet may also need to be modified to include soft or puréed foods and thickened fluids to reduce their risk of choking. A speech-language pathologist can help assess and make recommendations for diet modifications with Parkinson's disease as well.
Individuals with Parkinson's disease may speak very softly and may be difficult to understand (called hypophonia). A person may also have dysarthria which is speech with uneven tone, flow, volume, and pitch. Speech is often slowed as well. Speech problems often worsen over time and may be helped by a speech-language pathologist.
Individuals with Parkinson's disease may also have cognitive difficulties which refer to processing and using information. Some common cognitive problems include:
Decreased attention span
Decreased problem-solving skills
Difficulty learning new information
Increased visual-spatial problems
The degree of cognitive impairment usually worsens as the disease progresses.
Difficulties With Activities Of Daily Living (ADLs)
ADLs refer to basic personal care tasks including bathing, dressing, eating, mobilizing, and toileting.
Individuals with Parkinson's disease may have problems with mobilizing, “freezing” in place, bathing, grooming, toileting, dressing, eating, driving, travelling, as well as safety at home. A person has more difficulty performing these ADLs as the disease progresses due to increased muscle and cognitive impairment.
It can be hard to for individuals to adjust to these changes but there are ways to provide support and to promote as much independence and quality of life as possible.
Difficulties With Instrumental Activities Of Daily Living (IADLs)
Instrumental activities of daily living (IADLs) include common daily tasks such as housekeeping, preparing meals, doing laundry, managing one’s finances, running errands, and attending appointments. Because of cognitive and muscle impairment with Parkinson's disease, a person may find they are unable to perform their IADLs as the disease progresses and therefore need help.
Difficulty Managing Medications
Parkinson’ disease medication may cause confusion and hallucinations. For this reason, it is important that caregivers or a family member carefully monitor all medications that a person with Parkinson's disease is taking, particularly as the disease progresses and the person becomes more cognitively impaired.
Often caregivers notice cognitive changes even before the individual with Parkinson's disease becomes aware of them. If cognitive changes are noticeable, it is important to discuss this with the person and to share this information with their doctor as soon as possible.
Selecting Healthcare Professionals For Parkinson’s Disease
Because of the complexity of Parkinson's disease and the wide range of effects that the disease has on a person’s physical, emotional, and cognitive functioning, a number of healthcare professionals are usually required to help manage the disease effectively. Healthcare professionals who may be able to help an individual adapt and cope with Parkinson's disease include:
- Primary care physician or nurse practitioner
- Physical therapist
- Occupational therapist
- Speech language pathologist
- Movement disorder specialist
- Social worker
- Home health care staff
Transitioning Into Long-Term Care With Parkinson’s Disease
People with advanced Parkinson’s disease usually require constant care. A time may come when family members are no longer able to provide this type of care for an individual at home. When this time occurs, a transition to a long-term care facility is often necessary.
The main benefits of a long-term care facility for individuals with Parkinson's disease include:
- Increased access to social and recreational activities
- Opportunities for involvement by on-site medical and rehabilitation professionals
- A more accessible environment
- Staff to provide assistance 24/7
Long-term care may be the most suitable option in the following situations:
- Financial considerations do not permit home care (e.g. when the family caregiver must maintain other employment).
- Family limitations do not permit care at home (e.g. time, space, young children still at home)
- Caregiver’s physical and emotional strength is depleted
- Individual’s condition requires skilled nursing care or round-the-clock attention
- The physical layout of the home is unsuitable
- An individual with Parkinson's disease prefers to live independent of family
Long-Term Care Options For Parkinson’s Disease
Adult Day Care
Adult day care is beneficial for individuals who are living at home with a caregiver. This form of care may be used by caregivers who need to work outside the home or when they need to run errands, attend appointments, or simply have a respite break from caregiving.
There are 2 general types of adult day care:
- Adult social day care (which focuses on socialization and interaction with others).
- Adult day health care (which focuses on therapy needs and social services related to one’s condition).
The type of adult day care best suited will depend on needs and goals as well as how advanced Parkinson’s disease it is. These facilities also usually provide meals, activities, and some limited health services.
An individual is usually brought to the care facility early in the day and then returns home with their caregiver at the end of the day.
Assisted Living Facilities
Assisted living facilities (ALFs) are a good option for individuals who can no longer safely live in their own home but who are still able to and want to maintain some independence. Care staff is available 24 hours a day to help residents with ADLs and with any emergencies should they arise.
Meals, medication management, social activities, and transportation are commonly provided in these facilities although some services may incur additional fees.
The individual with Parkinson's disease will be assessed by facility staff before they are admitted to ensure the facility is able to meet their care needs. As the disease progresses, the person will need to move to a facility that can meet their increased care needs.
Continuing Care Retirement Communities
Continuing care retirement communities (CCRCs) are another good option for individuals with Parkinson's disease, however, CCRCs may have fairly high monthly costs as well as a steep “admission fee” so these facilities are usually best suited for individuals who have ample finances.
The significant benefit to CCRCs is that they offer different levels of care in one facility or on one campus. Some CCRCs offer assisted living, skilled nursing facility (SNF) care, memory care, and nursing home care all in one location. When an individual becomes a resident of a CCRC, they are able to move between different levels of care as their needs change without having to move to a different facility.
This can be very beneficial for all seniors but particularly for people with Parkinson's disease who often have some cognitive and emotional impairment. In addition, it can be helpful to have staff who get to know the resident well and their specific preferences and needs during the time they live in the CCRC.
Nursing homes are a good choice for individuals who are no longer able to live independently and who need ongoing help with most ADLs and regular supervision to remain safe.
Meals, medication management, nursing care, physical therapy, and ongoing assessment are the most common services provided in a nursing home. Individuals with Parkinson's disease are carefully monitored for choking risks and for falls risks.
After an initial assessment upon admission, an individualized care plan is set up to meet the unique needs of the person with Parkinson's disease in consultation with family. As the disease, progresses or other health conditions occur, the care plan is revised and updated in consultation with family to reflect the newly identified needs.
If an individual is able to remain at home with the assistance of family and home health care as the disease progresses, the time may come when the disease reaches a terminal stage. At this point, the primary healthcare provider may recommend hospice care.
Hospice care is end-of-life care that aims to help a dying individual remain as comfortable as possible while emphasizing quality of life. Treatment is focused on alleviating symptoms and suffering while meeting the spiritual and emotional needs of the person and their family.
If the hospice team determines that Parkinson's disease medications are easing symptoms such as muscle rigidity for your family member, they will likely be covered by Medicare.
Selecting A Long-Term Care Facility For Parkinson’s Disease
It is advisable for family members to visit a few long-term care facilities before a transition is necessary to get an idea of the available choices. This will allow for time to make the right decision and will be less stressful than finding a place on short notice.
The family may also want to familiarize themselves with palliative (comfort) care options, including hospice care in case the need arises in the future.
When visiting a facility, it is worth considering the following:
What specific services are important to the individual who will be living in the facility?
- A safe environment?
- Social activities?
- Assistance with daily living – Walking, eating, taking medications, bathing?
- Therapies – physical, speech, occupational, nursing?
- Health monitoring – Blood pressure, blood sugar levels, food/fluid intake, weight?
- Nutritious meals and/or snacks? Special diet?
- Exercise programming?
- Specialized care?
What does the caregiver need?
- Occasional free time?
- Coverage while working?
- Transportation for the resident?
- Assistance in planning care?
Effects Of Parkinson’s Disease On Caregivers
Caregiving for a person with Parkinson's disease can result in significant physical and emotional stress for caregivers. If the caregiver is a spouse/partner, there is the added component of an intimate relationship that is forever changed. Fear, denial, anger, guilt, and sadness are common emotions felt by caregivers of individuals with Parkinson's disease.
Support groups for Parkinson's disease are available that caregivers can attend with the individual living with Parkinson’s disease and there are support groups for caregivers alone. Parkinson's disease support groups are available in several locations across the country and there are many support groups online.
If a person is caregiving for someone with Parkinson's disease, it is important for them to acknowledge the feelings and struggles they are having at times and seek out support.
It is not uncommon for caregivers to let their own needs go unmet while they focus on the person with the disease. However, this often leads to burnout and health problems for the caregiver.
Respite care is a care option that is strongly recommended for caregivers who simply need a break from caregiving or need time to run errands and attend to their own needs. Family members or friends may be able to help provide this respite break for a caregiver. Alternatively, there are agencies that provide this type of care and service both in and outside one’s home.
Financial Considerations With Parkinson’s Disease
- Prescription medications
- Personal care supplies
- Adult day care services
- In-home care services
- Full-time residential long-term care services
The needs of an individual with Parkinson's disease will change over time due to the progressive nature of the disease and thus the associated costs will also change.
There are a number of different insurance options and programs which may be available to help cover medical costs for Parkinson's disease. These include:
- Health care coverage (e.g. Medicare)
- Long-term care insurance
- Veterans’ benefits
- Other public programs
Medicare is the main source of health care coverage for most individuals 65 and older. Other common sources of payment include private pay, employer pension plans, and personal savings.
Regardless of the age of the individual with Parkinson's disease, all healthcare plans meeting these needs should be kept active. It is sometimes possible to supplement an individual’s Medicare coverage with Medigap insurance which covers certain gaps in Medicare coverage such as paying for co-insurance or other items.
A long-term care insurance policy usually needs to be in place before a Parkinson's disease diagnosis occurs in order for long-term care to be covered for the disease. After a Parkinson’s disease diagnosis, the policy should be reviewed to determine:
- Eligibility of the person diagnosed
- When the covered individual is able to start collecting benefits
- Date the daily benefit begins
- Whether the benefit is adjusted annually for inflation
- Length of time the benefits will be paid
- Whether there is a maximum lifetime payout
- Type of care covered by the policy
- Whether there is an elimination period before the coverage begins
- Any tax implications of the policy
Medicaid is a state-administered program jointly funded by federal and state governments. Medicaid pays for medical care for individuals with very low income and asset levels as well as long-term care for people who have used most of their own money for care-related costs (under most circumstances). However, it is important to note that not all nursing homes accept Medicaid.
In addition, Medicaid will pay for hospice care in most states.
There are a number of other public programs which may fund services including adult day care, respite care, meal programs, caregiver support as well as other in-home services.
Legal Considerations With Parkinson’s Disease
In addition to addressing financial needs, it is also important to address legal concerns. Similar to financial planning, starting the legal planning process early allows the individual with Parkinson's disease to be involved and express their wishes for future care and decisions. This reduces the need for guesswork by families and allows for the person with Parkinson's disease to designate future decision makers on their behalf.
Early Parkinson’s disease planning also provides time to work through the complexities of legal issues that are involved in long-term care. Legal planning should include:
- Making plans for both health care and long-term care
- Making plans for finances and property
- Designating a person to make decisions on behalf of the individual with Parkinson's disease
To prepare most legal documents, an individual must have the legal capacity to do so. Legal capacity means that an individual is capable of having legal documents prepared (with the assistance of legal counsel if needed) and making decisions about what to include in these documents.
A lawyer will be able to help an individual and their family determine if a person has the legal capacity to participate in the preparation of legal documents. For this reason, it is important that a person and their family begin preparing any legal documents they wish to have as soon as possible while the individual can still participate in this process.
In most cases, if an individual with Parkinson's disease is able to understand the meaning and importance of a given legal document, they likely have the legal capacity to sign the document. The requirements of legal capacity may vary between different documents.
Before a person with Parkinson's disease signs a legal document, it is important to discuss the document with them. This can help ensure that they fully understand the document and the consequences of signing it. If there are concerns about the individual’s ability to sign the document, it is recommended that medical advice is sought to help determine the person’s current mental ability.
Furthermore, it is recommended to review what legal documents currently exist for the individual (if any). Verifying whether living wills, trusts, and powers of attorney were signed before the individual was diagnosed is important since they may not remember having completed these documents as the disease progresses.
In addition, even if legal documents were completed in the past, it is important to review them with another person in order to make any necessary corrections and/or updates.
Individuals with Parkinson's disease and their family may want to consider having a number of legal documents prepared. Some of these documents will relate to financial matters while others will relate to medical care and interventions the person does and does not wish to have going forward.
Other documents will identify who is appointed to make financial and healthcare decisions on the person’s behalf when they are no longer able to make decisions on their own.
Some common legal documents to consider preparing include:
- Power of attorney
- Healthcare power of attorney
- Living will
- Standard will
- Living trust
Power Of Attorney
The power of attorney (POA) document allows the individual with Parkinson's disease (called the principal) to name another individual (called an agent or attorney-in-fact) to make financial and other decisions when they are no longer able to.
POA documents should be written to be durable so they remain valid even after the principal can no longer make their own decisions. One or more successor agents should also be selected in the event that the primary agent is unable to assume their responsibilities.
It is important that the individual with Parkinson's disease inform the person they have chosen to be their POA agent. It is equally important that the individual discuss this with their family as well so there are no surprises for those involved if the POA agent should ever be required to carry out their functions.
Finally, the appointed POA agent needs to understand that they will be required to make decisions in the best interests of the principal. A lawyer can help answer any questions about POA and the responsibilities of both the principal and the appointed agent.
Healthcare Power Of Attorney
A healthcare power of attorney allows an individual to appoint an agent to make healthcare decisions on their behalf if they should become incapacitated and unable to communicate their wishes.
This would include decisions about lifesaving measures such as resuscitation as well as administration of nutrition through an intravenous (IV) or feeding tube if the individual becomes unable to eat.
This document also gives the agent the ability to make decisions about providing care staff with do-not-resuscitate (DNR) instructions for the person with Parkinsons disease as part of the person’s end-of-life wishes.
It is important to note that a power of attorney for health care does not allow an agent to make decisions for an individual until they are no longer able to do so for themselves. Therefore, a person with Parkinsons disease remains in control of their healthcare decisions as long as they have the decision-making capacity.
As noted above, all POA documents including the healthcare for power of attorney should be written as durable so these documents remain effective even if the principal becomes incapacitated.
In a living will, an individual is able to document what kind of medical care they want and do not want if they become physically or mentally incapacitated. They may also state their wishes regarding resuscitation and DNR instructions.
A living will fits well with a healthcare power of attorney because it provides clear instructions about an individual’s wishes so that a healthcare power of attorney agent knows what decisions to make should the need arise.
In a standard will, the individual with Parkinson's disease identifies the person they have chosen as the executor of their will (the individual who will manage the estate) and their beneficiaries (the individuals who will receive the assets in the estate).
A will only takes effect when an individual dies. A will cannot be used to communicate healthcare preferences but it can provide peace of mind that a person’s wishes regarding distribution of their assets and estate will be fulfilled upon their death.
Because each state has its own rules about the validity of wills, a will should be prepared by the person with Parkinson's disease as soon as possible while they are still competent.
A living trust is another way for an individual (the grantor or trustor) to give instructions for how their estate should be handled upon their death. If a revocable living trust is established, a person may cancel or change the trust at any time while they are alive.
A living trust also permits an individual to transfer whatever assets they have into the trust while they are alive so they may live off these assets. Once the individual who established the trust dies, the trust becomes irrevocable.
One important benefit of a living trust is that assets in the trust do not go through public probate after an individual dies. This protects the assets from costly probate fees in most states and it allows the beneficiaries privacy to access the assets without public knowledge unlike a standard will.
If an individual with Parkinson's disease becomes unable to make their own decisions and does not have any family or if family members are unable to agree about the decisions that need to be made, the court may appoint a guardian or conservator.
A guardian or conservator is an individual who is appointed by the court to make financial and healthcare decisions on behalf of an individual who has become incapacitated and unable to make their own decisions. A guardian is also responsible for ensuring that an appointed individual’s basic daily needs are being met.
The process of determining guardianship or conservatorship can be a lengthy process and can be quite costly. A guardian or conservator is overseen by a court to ensure they are acting in the best interest of the individual they have been appointed to act on behalf of.
Support Organizations For Parkinson’s Disease
For more information about Parkinson's disease and support for individuals and their families, please see the sites listed below:
- Parkinson’s Disease Foundation
- The Michael J. Fox Parkinson’s Disease Foundation
- Aging Parents and Eldercare
- Caregiver Action Network
- NeuroTalk Communities
- Parkinson's Creative Collective
- National Alliance for Caregiving
- American Parkinson Disease Association
FAQs About Parkinson’s Disease
1. How does a doctor diagnose Parkinson’s?
There is no specific test for diagnosing Parkinson's disease. However in 2011, the FDA approved the DaTscan which takes pictures of the dopamine system in the brain. Doctors are able to use these results to increase their certainty of a Parkinson’s diagnosis. The disease is currently diagnosed by a doctor completing a neurological examination and looking for two or more of the cardinal signs of Parkinson’s which include muscle rigidity, slowed movement, and tremor.
2. Why does a person with Parkinson’s drool?
Researchers and doctors are not completely sure what causes drooling in individuals with Parkinson's disease. Some theories suggest that drooling occurs due to:
- Difficulty swallowing excessive saliva in the mouth as it accumulates.
- Lack of dopamine which controls saliva production.
- The forward stooped posture and open mouth that is often characteristic of people with the disease.
3. My dad has Parkinson’s and he gets emotional and cries so easily whenever we visit him. I’ve never seen my dad cry before and it makes me uncomfortable. Should I be concerned that something is wrong or is this part of his Parkinson’s?
Inappropriate crying is actually common in people with Parkinson's disease. It is known as the pseudobulbar affect (PBA) and occurs in a variety of neurological disorders. PBA refers to inappropriate crying without feeling sad or uncontrollable laughing without feelings of humor or happiness. Fortunately, PBA may be treated with medication to help control this distressing response.
4. Is incontinence caused by Parkinson's disease?
Not all individuals with Parkinson's disease are incontinent. However, for individuals who are incontinent, it is thought that this incontinence is due to impaired nerve cells impulses from the brain traveling to the bladder and/or bowel.
Proximity of care is very important when considering options
Research care options that are nearby when thinking about the next step for your loved ones.
Leona J. Werezak RN, BSN, MN is a registered nurse and adjunct nursing professor. She has 24 years experience working in a variety of healthcare settings including such remote locations as the Arctic Circle. Her research in early stage dementia was published in the Canadian Journal of Nursing Research and re-published in their 40th anniversary issue which showcased exceptional research published since the journal began. Her work in dementia care has also been published in the Journal of Gerontological Nursing. She currently teaches surgical nursing care on a thoracic/vascular unit to baccalaureate nursing students. Her clinical work with nursing students involves extensive work with older adults who have multiple chronic health conditions.