Parkinsons Disease & Long Term Care
Parkinsons disease affects 10 million people worldwide, including nearly one million Americans. As part of Parkinsons Disease Awareness Month, weve compiled a list of questions to help you and your loved one get answers about PD, find resources, and plan for the future.
What is PD?
According to the Parkinsons Foundation, PD is a neurodegenerative, progressive disorder that affects predominantly dopamine producing neurons in a specific area of the brain called substantia nigra.
PD is the second most common neurodegenerative condition after Alzheimers, and symptoms typically develop slowly over years.
- Tremors in hands, arms, legs, jaw or head
- Stiffness of the limbs and trunk
- Slowness of movement
- Impaired balance and coordination.
What causes PD?
Scientists still do not know what causes Parkinsons disease. According to the National Institute on Aging, many researchers believe that PD results from both genetic factors and environmental factors, with few cases traced to specific genetic mutations.
What are some early signs of PD?
No two PD patients have the same symptoms, which can make diagnosis difficult. Here are some resources to help you identify early signs of PD:
What is the prognosis for PD?
There is no cure for PD, but medications, exercise, and proper treatment can help control symptoms. Read about the stages of Parkinsons here.
What is the role of long term care in treating Parkinsons disease?
Do People With Parkinsons Need A Caregiver
There is no one answer to this question, as each persons individual situation is different. However, in general, people with Parkinsons disease may benefit from having a caregiver, especially if their symptoms are severe. A caregiver can provide assistance with activities of daily living, help manage medications, and provide emotional support.
We refer to caring as everything we do to assist a friend or relative who is ill or disabled as a result of their illness or disability. It is an ever-changing role for Parkinsons disease caregivers, with their demands increasing with each passing year. A caregiver is often a health care advocate for their loved one, manages medications, schedules appointments, and assists with daily needs. Diagnosed with Parkinsons disease in the early stages, caregivers are assisting their loved one with the diagnosis and learning how to manage their medications. The caregivers responsibilities and burden increase significantly during the mid-stage of the disease. Changes in the way a person thinks in late stage PD can also include changes in the way they act.
Planning For The Uncertain Future
Despite this, there are still things you can do to be prepared and plan ahead. For this discussion, I reached out to an expert on this topic, Eleonora Tornatore-Mikesh. Ms. Tornatore-Mikesh is President and CEO of CaringKind, an organization based in New York City that works to develop information, tools and training to support individuals and families affected by progressive neurological disease. She has spent her career working with those who are planning for the uncertain future and we asked Ms. Tornatore-Mikesh for her advice on navigating the future with a progressive neurological condition, like PD.
Q: Typically, when a person with PD or care partner asks the physician to explain what their progression of PD will be like, the physician typically answers Parkinsons disease is highly variable from person to person and we therefore cant predict what will happen to you. How do you deal with this uncertainty?
A: I tell people to rephrase what they are asking. Yes, it is not possible for a doctor to know exactly what will happen to you. Instead, turn it around and ask what you want to know in a positive light: I know disease progression is variable from person to person, but within the stage of disease that I am now, what can I do to improve my quality of life? What are my wellness opportunities?
Q: Do you have any tips for our families on how to live well in the face of an uncertain future?
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Continuing Care Retirement Communities
Continuing care retirement communities are another good option for individuals with Parkinsons 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 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 Parkinsons 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.
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Difficulties With Activities Of Daily Living
ADLs refer to basic personal care tasks including bathing, dressing, eating, mobilizing, and toileting.
Individuals with Parkinsons disease may have problems with mobilizing, âfreezingâ in place, bathing, grooming, toileting, dressing, eating, driving, traveling, and 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 promote as much independence and quality of life as possible.
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Parkinsons Disease And Its Symptoms
Parkinsons disease is a progressive nervous disorder that affects the nerve cells in the brain responsible for controlling body movement. There is no cure for Parkinsons but medications help in treating the disease.
Most people develop Parkinsons disease around the age of 60 while about 5 to 10 percent develop early onset Parkinsons disease before the age of 50.
Although there is no one definitive cause for Parkinsons, medical experts believe genetics, such as mutated genes, and exposure to chemicals, pesticides, and toxins, may be contributing factors to the disease.
According to the Hoehn and Yahr system, which describes how the symptoms progress, Parkinsons disease has five stages:
- Stage I: Symptoms are mild and only on one side of the body.
- Stage II: Still considered early disease, symptoms are on both sides of the body.
- Stage III: Considered mid-stage. Loss of balance and slowness of movement begins.
- Stage IV: Disease becomes severely disabling. Patients need help walking and other symptoms become severe.
- Stage V: Disease becomes more advanced and individuals are confined to a bed or wheelchair.
Early signs of Parkinsons disease, such as shaky hands, can go unnoticed because they can easily be mistaken for common signs of aging.
Although people with Parkinsons may experience different symptoms, some symptoms are common to everyone diagnosed with the disease. These symptoms include:
- Tremors or shaking
- Vision problems
Parkinsons Disease And Assisted Living
- California Assisted Living Association :The voice of Assisted LivingPhone: 916.448.1900
- Elder Abuse:Report suspected abuse by calling 800-677-1116
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Summary: A discussion about the relationship between Parkinsons Disease and Assisted Living. Assisted Living can offer an important and viable living and housing alternative for individuals affected by Parkinsons a progressive and debilitating disease. Assisted Living can also provide substantial relief to those who have assumed the role as caregiver. This article is not to be considered as, or used as medical advice.
I receive a fair number of daily emails to our site about all aspects of assisted living. Often times, the emails and messages I receive further clarify to me that assisted living is a confusing subject, and industry and that families faced with the need for long-term care for a loved one may not fully understand what assisted living offers, or can do for them.
Here are a few of the questions we have received from families or individuals asking about assisted living and Parkinsons Disease.
Both my mother and my sister live in NH. My mother has Parkinsons my sister has MS. I was wondering if you accept MedicAid. Nanci
Parkinsons Disease:
Responses to this article:
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Choosing An Assisted Living Residence: A Consumer’s Guide
This 18-page booklet outlines what activities and services assisted living facilities provide residents, resident’s rights, how facility personnel is managed, paying for assisted living, tips for choosing a facility, a checklist of key questions to ask staff, a cost calculator , a checklist before signing the service contract, and some thoughts about moving day.
Finding A Nursing Home: Don’t Wait To Do The Research Until You Need One
None of us want to be discharged from the hospital into a poor-quality nursing home, but many don’t realize that you have a choice. Advice from experts is to become familiar with nursing homes in your area before you are even hospitalized. Dig into government reports and conduct your own inspection. This article tells you what to look out for when evaluating your options.
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Warning Signs Of Parkinsons Disease
Generally speaking, the first hints of the illness are usually mild, intermittent and show up on just one side of the body. Three cardinal signs are:
- Shakiness from a tremor in a hand, arm or leg or in the jaw or face when the patient isnt actively moving.
- Stiffness or rigidity of the arms, legs and torso.
- Slowness of movements, also known as bradykinesia.
Other common signs and symptoms may include:
- Small, cramped handwriting.
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Exercise And Healthy Eating
Regular exercise is particularly important in helping relieve muscle stiffness, improving your mood and relieving stress.
There are many activities you can do to help keep yourself fit. If you’re newly diagnosed or your symptoms are mild, you could try vigorous activities like team sports, cycling and running.
If your symptoms are complex or progressing, you can try less strenuous activities such as walking, or simple stretching and strengthening exercises.
You should also try to eat a balanced diet containing all the food groups to give your body the nutrition it needs to stay healthy.
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Home Remedies And Lifestyle Changes
In addition to exercising and taking medication, your doctor may suggest you adjust your lifestyle to help you control your symptoms, Positive lifestyle changes include healthy eating, drinking plenty of fluids and attending Parkinsons support groups. You may also want to research home remedies such as massage, tai chi and yoga all of which can be helpful to those with Parkinsons disease.
Evaluating Assisted Living Facilities
A 2-page PDF outlining things to consider when evaluating an assisted living facility for yourself or a family member. Areas to consider are the environment, comfort level with staff availability and communication, residents service satisfaction, charges and fees, transportation options and availability, and medical & financial emergency policies.
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Activities In Assisted Living For People With Parkinsons
Parkinsons can isolate someone socially, leaving them feeling alone and depressed. Almost half of Parkinsons patients experience depression or anxiety, according to the Mayo Clinic.
To prevent feelings of isolation or loneliness, many assisted living communities offer an array of activities to help residents continue their hobbies or find new passions. Think adaptive fitness classes like chair aerobics, trips to the shopping mall with friends, book clubs, or simply morning coffee and conversation in the courtyard.
The Benefits Of Planning Ahead
Even if you do not expect a transition in the near future, it can be a good idea to visit facilities before a move is required. Starting early will allow you time to get to know the skilled nursing facilities in your area in case you need to make a quick decision. Keep in mind that your options may be dependent upon factors such as availability or finances.
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Medicaid / Hcbs Waivers
Under Medicaid, some family members can be paid as caregivers.
Nursing Home CareHome and Community Based ServicesPCA / PCS Programs
PCA stands for Personal Care Assistance or Personal Care Attendant and PCS for Personal Care Services. These are regular Medicaid programs that will pay a caregiver to come to ones home and provide personal care such as assistance with the activities of daily living An especially attractive element of these programs is the fact that often times, the paid caregiver can be someone familiar to the individual with Parkinsons. Friends and certain family members can be hired as paid caregivers. The downside of PCA / PCS programs are that the hourly wage that caregivers receive is very low and this is an optional Medicaid benefit. This means not every state offers this option as part of their regular Medicaid programs. A list of states which do offer PCS can be found here. Be aware that this list is not exhaustive and if one does not see their state listed, they should also inquire with their state Medicaid office if such a program is available in their state.
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Choosing An Assisted Living Residence: A Consumers Guide
This 18-page booklet outlines what activities and services assisted living facilities provide residents, residentâs rights, how facility personnel is managed, paying for assisted living, tips for choosing a facility, a checklist of key questions to ask staff, a cost calculator , a checklist before signing the service contract, and some thoughts about moving day.
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What Types Of Care Do Nursing Homes Provide
There are two types of care provided by nursing homes:
- Basic care. This provides services that will help to maintain a person’s ability to carry out necessary daily functions, like personal care and getting around. They will also ensure that the person is supervised and safe.
- Skilled care. This is care that requires the services of a registered nurse for treatments and procedures on a regular basis. Skilled care also includes services provided by specially trained professionals, such as physical, occupational, and respiratory therapists.
Assisted Living Or A Nursing Home
The immense popularity of assisted living facilities has arisen, partly, out of the promise to never to put a loved one in a nursing home. But assisted living wont work for everyone. Some need the greater supervision and higher staff ratios of a good nursing home. This article, from The New Old Age blog, explains the differences between the two and why assisted living may only be a temporary solution.
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Difficulties With Instrumental Activities Of Daily Living
Instrumental activities of daily living include common daily tasks such as housekeeping, preparing meals, doing laundry, managing oneâs finances, running errands, and attending appointments. Because of cognitive and muscle impairment with Parkinsons disease, a person may find they are unable to perform their IADLs as the disease progresses and therefore need help.
Department Of Veterans Affairs
Through the VA Health Care program and their pensions, the VA offers veterans multiple avenues of assistance with medical equipment, assistive technology and home modification. The avenue best pursued depends on whether or not the individual with Parkinsons Disease was exposed to herbicides during their military service. For those individuals not exposed, they are most likely to receive assistance from the Aid and Attendance pension benefit, VD-HCBS or the HISA Grant. For those veterans with PD who were exposed, VA Health Care will cover the cost of much assistive technology and medical equipment.Another option for veterans comes not from the VA but from a non-profit organization with a veteran-specific program called Heroes at Home. This program is intended to assist in making home modifications and typically provides free labor for modifications but does not cover the cost of materials.
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Financial Considerations With Parkinsons Disease
There are a number of financial implications to consider when an individual is diagnosed with Parkinsons disease. Financial needs related to Parkinsons disease may include:
- Prescription medications
- Veteransâ 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 Parkinsons disease, all health care plans meeting these needs should be kept active. It is sometimes possible to supplement an individualâs 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 Parkinsons disease diagnosis occurs in order for long-term care to be covered for the disease. After a Parkinsonâs 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
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Parkinsons And Assisted Living Communities: What You Should Know
If your loved one is living with Parkinsons, long-term care communities like assisted living can help them continue living an independent lifestyle while getting the help they need. Many of these communities feature homelike apartments or suites and amenities like pools, libraries, beauty salons, and movie theaters. Assisted living communities also help with activities of daily living such as bathing, dressing, and using the toilet along with medication management or administration.
Consider looking for an assisted living community that trains caregivers to understand the signs and symptoms of Parkinsons disease, so they can better help your loved ones specialized needs.
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