Saturday, June 15, 2024

Advanced Parkinson’s Home Care

Difficulties With Instrumental Activities Of Daily Living

CareMAP: Caring for Someone with Advanced Parkinson’s

Instrumental activities of daily living include common daily tasks such as housekeeping, preparing meals, doing laundry, managing ones 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.

Sheltered Or Retirement Housing

This is specially designed for older people. It may appeal if you want to live independently but in a smaller home and one that’s easier to manage.

‘Extra care’ sheltered housing offers more support in some cases including personal care. Residents have the independence of living in their own flat but may have meals prepared for them.

You can move into this type of housing with your partner.

Faqs About Parkinsons Disease

1. How does a doctor diagnose Parkinsons?

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 Parkinsons diagnosis. The disease is currently diagnosed by a doctor completing a neurological examination and looking for two or more of the cardinal signs of Parkinsons which include muscle rigidity, slowed movement, and tremor.

2. Why does a person with Parkinsons 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 Parkinsons and he gets emotional and cries so easily whenever we visit him. Ive 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 Parkinsons?

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.

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Things To Know About Assisted Living For Someone With Parkinsons

Assisted living facilities are not equipped to provide medical care, which your loved one with PD may need. You may be able to hire extra help, or the facility may charge additional for help with dressing or eating.

Doctors who see people at assisted living facilities are contracted, not employees. If you need to talk to them, make an appointment rather than hanging around the facility and asking them questions.

Medications for PD are complex, and as a person ages, they may receive additional prescriptions for other conditions. Its important for medication management to be overseen by a neurologist who is a movement disorders specialist, as they are trained in understanding the different medications for PD and potential interactions with other drugs.4

What Is The Prognosis And Life Expectancy For Parkinsons Disease

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The severity of Parkinsons disease symptoms and signs vary greatly from person to person, and it is not possible to predict how quickly the disease will progress.

  • Parkinsons disease itself is not a fatal disease, and the average life expectancy is similar to that of people without the disease.
  • Secondary complications, such as pneumonia, falling-related injuries, and choking can lead to death.
  • Many treatment options can reduce some of the symptoms and prolong the quality of life.

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Stage One Of Parkinsons Disease

In stage one, the earliest stage, the symptoms of PD are mild and only seen on one side of the body , and there is usually minimal or no functional impairment.

The symptoms of PD at stage one may be so mild that the person doesnt seek medical attention or the physician is unable to make a diagnosis. Symptoms at stage one may include tremor, such as intermittent tremor of one hand, rigidity, or one hand or leg may feel more clumsy than another, or one side of the face may be affected, impacting the expression.

This stage is very difficult to diagnose and a physician may wait to see if the symptoms get worse over time before making a formal diagnosis.

Social Security Disability Insurance

SSDI, often referred to as simply Disability, is assistance intended for those individuals who are of working age and cannot work as a direct result of their medical condition. The SSA does not provide care assistance but instead provides financial assistance that can be used for care. To be eligible one must both have a written diagnosis of Parkinsons Disease and have earned monthly income of less than approximately $1,000.

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Advanced Parkinsons Disease Symptoms

Parkinsons disease typically occurs in adults as they age and is characterized by tremors in the hands, arms, legs, and face, as well as slow movement, poor balance, and lack of coordination.

Parkinsons disease typically progresses in five stages. In the first three stages, symptoms are mild to moderate and less limiting to daily life. These include:

  • Tremors or shaking
  • Changes in posture, walking, and facial expression
  • Difficulty walking, talking, eating, or dressing

In the final two stages, when the disease has progressed to advanced Parkinsons, the symptoms become more severe and limiting. These include:

  • Needing a walker or wheelchair to move
  • Needing help with daily activities
  • Having stiffness in the legs that makes it difficult to stand or walk
  • Becoming bedridden
  • Experiencing hallucinations and delusions

Where Can You Get Palliative Care For Parkinsons

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There are multiple providers that offer palliative care programs.

Often, agencies that offer home healthcare, hospice care, or senior living programs, also offer palliative care. Your doctor might be able to recommend a palliative care professional in your area.

You can also use this palliative care directory to find one in your area.

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What Medications Are Used To Treat Parkinsons Disease

Medications are the main treatment method for patients with Parkinsons disease. Your doctor will work closely with you to develop a treatment plan best suited for you based on the severity of your disease at the time of diagnosis, side effects of the drug class and success or failure of symptom control of the medications you try.

Medications combat Parkinsons disease by:

  • Helping nerve cells in the brain make dopamine.
  • Mimicking the effects of dopamine in the brain.
  • Blocking an enzyme that breaks down dopamine in the brain.
  • Reducing some specific symptoms of Parkinsons disease.

Levodopa: Levodopa is a main treatment for the slowness of movement, tremor, and stiffness symptoms of Parkinsons disease. Nerve cells use levodopa to make dopamine, which replenishes the low amount found in the brain of persons with Parkinsons disease. Levodopa is usually taken with carbidopa to allow more levodopa to reach the brain and to prevent or reduce the nausea and vomiting, low blood pressure and other side effects of levodopa. Sinemet® is available in an immediate release formula and a long-acting, controlled release formula. Rytary® is a newer version of levodopa/carbidopa that is a longer-acting capsule. The newest addition is Inbrija®, which is inhaled levodopa. It is used by people already taking regular carbidopa/levodopa for when they have off episodes .

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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.

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Why Is This Important

This study reveals unmet needs among those in the late stages of Parkinsons and their families. These issues are likely to apply in other chronic progressive neurological disorders such as dementia.

The shift from hospital care to community services is complicated in England by the separation in social care and healthcare funding, and the separation in organisation of different service providers. This research underlines problems with this model.

The research demonstrates the importance of Parkinsons Disease Nurse Specialists in caring for patients in their homes by expertly managing symptoms, providing personalised information and a link to hospital services, and offering emotional support. It highlights the importance of finding better ways of managing and living with deterioration and eventually planning end of life care. In parallel, informal caregivers could be better supported to help people with late-stage Parkinsons retain their sense of self, maintain day-to-day life, and allow them to stay in their own homes for longer.

How Is Parkinsons Disease Treated

5 Stages of Parkinsons Disease

There is no cure for Parkinsons disease. However, medications and other treatments can help relieve some of your symptoms. Exercise can help your Parkinsons symptoms significantly. In addition, physical therapy, occupational therapy and speech-language therapy can help with walking and balance problems, eating and swallowing challenges and speech problems. Surgery is an option for some patients.

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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.

How Is Parkinsons Treated

Parkinsons disease can also be broken down into four stages: diagnosis, maintenance, complex and palliative. In the early stages of Parkinsons disease, medication treatment can be very effective. However as the disease progresses into the complex and palliative stages, the individual may become more restricted despite an ideal medication therapy regime.

There is no ideal medicinal treatment for Parkinsons. Therapy will be tailored to the individual, their symptoms, disease progression, lifestyle and physical tolerance. However most medication prescribed to someone with Parkinsons will fit into one of these categories:

  • Levodopa dopamine replacement therapy
  • Dopamine agonists mimic the action of dopamine
  • COMT inhibitors these are used in conjunction with Levodopa and blocks the COMT enzyme to prevent levodopa breaking down in the intestine so more of it will reach the brain
  • Anticholinergic block the effect of acetylcholine to rebalance its levels with dopamine
  • Amantadine has anticholinergic properties and improves dopamine transmission
  • MAO type B inhibitors prevent the metabolism of dopamine within the brain

As the disease progresses, medication management for the individual will need to change. However one important factor which must be taken into consideration regarding medications is time. These medications need to be taken on time: if they are taken late, they can severely impair the movements of the person with Parkinsons.

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Caring For Someone With Parkinsons Disease

Caring for someone with Parkinsons disease will change as the condition progresses.Your loved one is likely to cope well on their own during the early stages, and may only require transportation to doctors appointments, social engagements, and shopping trips. But their dependence will inevitably grow, and at some point, they may need your help with daily personal tasks, medication management, making financial decisions, and advocating with healthcare providers on their behalf.

Parkinsons disease places a significant burden on family caregivers, and they tend to suffer from higher rates of anxiety, depression, and sleep-related problems. These issues are even more common when Parkinsons disease causes a loved one to experience dementia, hallucinations, and other cognitive issues.

Caring for someone with Parkinsons disease can also result in social isolation, especially once the disorder reaches advanced stages. In some cases, caregivers reported that their increasing responsibilities led to tension with a spouse or partner. They were also more likely to report financial strain, especially if they reduced work hours or left their jobs entirely because of caregiving obligations.

What Should We Look For In A Nursing Home Facility

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The following checklist will help you and your family to evaluate different nursing homes. Review the checklist before your visit to the facility. Be sure to take this checklist with you.

Nursing Home Checklist

FIRST: Ask for a list of references of people who have used their facility and are willing to speak to prospective residents. Your physician may have experience with a particular facility.


  • Does the nursing home provide the level of care needed, such as skilled or intermediate care?
  • Does the nursing home meet local and/or state licensing requirements?
  • Does the nursing home’s administrator have an up-to-date license?
  • Does the nursing home meet state fire regulations ?
  • What are the visiting hours?
  • What is the policy on insurance and personal property?
  • What is the procedure for responding to a medical emergency?
  • Does the nursing home have a Medicare license?


  • Is there a waiting period for admission?
  • What are the admission requirements?

Fees and financing

  • Have fees increased significantly in the past few years?
  • Is the fee structure easy to understand?
  • What are the billing, payment, and credit policies?
  • Are there different costs for various levels or categories of services?
  • Are the billing and accounting procedures understandable?
  • Does the nursing home reveal what services are covered in the quoted fee and what services are extra?
  • What governmental financing options are accepted ?
  • When may a contract be terminated? What is the refund policy?


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Complete Your Living Will

A Living Will is a legal document that specifies the types of treatments you do or do not want at the end of your life, if you are ill and wont likely recover or if you are in a coma and are not likely to come out of it.

As you complete your Living Will, you should clarify your desires related to:

  • Cardiopulmonary resuscitation
  • Do not resuscitate order
  • Do not intubate order
  • Blood transfusions
  • Artificial nutrition and hydration
  • Organ donation

Once your Living Will is signed by you and your witness or witnesses, it is legally binding. It goes into effect, however, only once you are deemed incompetent AND incapacitated by at least one doctor. If you are just incapacitated and are likely to get better, your Living Will will not go into effect.

*Be sure to revisit and revise your Living Will as necessary. Its good practice to review it every five years or after significant life changes to make sure it still represents what you want.

Accessibility Of The Facility

Because walking and balance can be difficult for people with Parkinsons, they should look at the design-friendliness of the assisted living facility they are evaluating, says Lea Ann.

She recommends communities with short hallways and quick access to common areas like lounges, dining rooms, and places where activities take place.

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What Lifestyle Changes Can I Make To Ease Parkinsons Symptoms

Exercise: Exercise helps improve muscle strength, balance, coordination, flexibility, and tremor. It is also strongly believed to improve memory, thinking and reduce the risk of falls and decrease anxiety and depression. One study in persons with Parkinsons disease showed that 2.5 hours of exercise per week resulted in improved ability to move and a slower decline in quality of life compared to those who didnt exercise or didnt start until later in the course of their disease. Some exercises to consider include strengthening or resistance training, stretching exercises or aerobics . All types of exercise are helpful.

Eat a healthy, balanced diet: This is not only good for your general health but can ease some of the non-movement related symptoms of Parkinsons, such as constipation. Eating foods high in fiber in particular can relieve constipation. The Mediterranean diet is one example of a healthy diet.

Preventing falls and maintaining balance: Falls are a frequent complication of Parkinsons. While you can do many things to reduce your risk of falling, the two most important are: 1) to work with your doctor to ensure that your treatments whether medicines or deep brain stimulation are optimal and 2) to consult with a physical therapist who can assess your walking and balance. The physical therapist is the expert when it comes to recommending assistive devices or exercise to improve safety and preventing falls.

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