Nursing Care

Parkinson's can present a clinical challenge to nurses in all areas of health care, and as the second most commonly occurring progressive neurological condition, it is a diagnosis that nurses need to have a degree of familiarity with. It is thought that 74,000 to 80,000 Australians are affected by Parkinson's with 20% of people affected being aged between 18- 65. There is also a 3% annual increase in incidence thought to relate to our ageing population.

Parkinson's is a chronic, incurable illness and people living with Parkinson's will need to access hospitals and health care form diagnosis to end of life.

Download the Clinical Update on Parkinson's Disease (coming soon)

 

Areas of significance for Nurses include:

Care of the person Following Diagnosis:

Currently there is no diagnostic tool available for people living with Parkinson's and the diagnostic phase is often lengthy with mis-diagnosis being common. Supporting someone in coming to terms with their diagnosis is important. Having awareness that the diagnosis of a chronic and incurable illness is a significant life event, and patients will need empathy and may have many questions. Assisting patients in accessing appropriate information can be helpful, this may mean referring patients to peak bodies and reputable web sites such as www.parkinsonsvic.org.au who will be able to provide information that is symptom specific and at an appropriate level.

Assistance with medication management:

Most peole living with parkinsons will be commenced on medication at diagnosis or soon after. Initially medication regimes are simple, E.g. TDS tablets however as the illness progresses the regimes become more complicated, and the nurse plays an important role in assisting in good medication management. Sugesting use of medication timers or some kind of prompting devise is often a good intervention.

It is important to reassure people living with Parkinsons; that the medications will always help with symptom control, even though in later illness this may be reduced. The Nurse also plays an important role in assisting with managing any medication side effect that may be encountered.

One of the most important aspect of managing Parkinson's is to ensure that the patient gets there medication on time. This can be particularly difficult as often the drugs may be due at unusual times or be needed very frequently. The drugs also have very small margins (about 15 minutes) in regards to being given to late or too early. So it is very important to get medication on time every time. If medication is given to early or to late it may cause some side effects or result in a worsening motor performance.

 

Medications used to manage Parkinson's symptoms

There are a number of different types of drugs prescribed to people with Parkinson's.

The main ones prescribed are:

• Dopamine replacement therapy ( Sinamet/Madopar/Kinson)
• Dopamine agonists (Cabaser/Sifrol/Apomine)
• COMT inhibitors (Comtan)
• MAO-B inhibitors (Selegene/Eldepryl)
• Anticholinergics (Artane)
• Combination therapies (Stalevo)

There are some other medications that may be used to mange Parkinson's that are available as a Private Prescription, or are privately imported. E.g. Neupro (a dopamine agonist patch), Tasmar (A COMT inhibitor).

Nursing staff administering drugs to patients should be aware that some commonly used medications may increase the medication side effects and/or block the uptake of dopamine in the brain, worsening the symptoms.

DRUGS TO BE AVOIDED WITH PARKINSON'S MEDICATION

This table of contraindicated drugs is not exhaustive and staff should check with a doctor or pharmacist:

• Haloperidol (Serenace / Haldol)
• Chlorpromazine (Largactil)
• Metoclopramide (Maxolon)
• Perphenazine (Triptafen)
• Flupentixol (Fluanxol/Depixol)
• Pimozide (Orap) Sulpiride (Dolmatil)
• Thioridazine (Melleril)
• Perphenazine (Fentazin)
• Trifluoperazine (Stelazine)
• Fluphenazine haloperidol (Moditen/Serenace/Haldol)
• Prochlorperazine (Stemetil)
• Fluphenazine with nortriptyline (Motival/Motipress)
• Tranylcypromine with trifluoperazine (Parstelin)

The only oral anti-sickness drug that can be safely taken is Domperidone (Motilum)

The effect of medication can also be impacted upon by protein in the diet as the same carrier cells that transport Dopamine replacement therapies across the Blood Brain Barrier are responsible for transporting Amino Acids across the Blood brain barrier. Ideally medications should be taken ½ hour prior to meals or 45 minutes following meals, this timing becomes more important when the patient has been living with Parkinson's for a number of years.

 

Individual drug regimes

Drug treatment is prescribed to suit the individual, both in terms of dosage and the combination of drugs, as each person reacts to the medication in different ways. Often it takes some time to establish the most appropriate drug regime for an individual, and even then it remains effective for a variable length of time, because of the progressive nature of the condition.

It's not only the drug dosage and combinations that are important. The timing of administering these drugs is also key, as over time symptoms may reoccur prior to the next dose of medication. This is known as wearing off, and is a sign that medications need to be reviewed. The type of symptoms that can occur include increasing tremor and stiffness, episodes of sadness and anxiety and freezing or Motor blocking.

Unwanted involuntary movements known as dyskinesia may appear, and there may be sudden switches from being ‘on' and able to move to being ‘off' and immobile. One minute the individual is able to go about his or her day-to-day activities, and the next, is completely frozen, unable to move, get out of bed or walk down the corridor.

Parkinson's affects more than motor function and there are other areas that need to incorporated into care planning.

Cognitive and Psycho-social impact

Many people living with Parkinsons experience some mild cognitive changes such as a diminished ability to multitask or complete complex tasks. Planning ahead and breaking complex tasks into small manageable sections is a valuable strategy used by many people living with Parkinson's. For nursing staff, being conscious about how we interact will help, e.g. by not distracting the person with Parkinson's while they are completing a task. Using strategies such as providing physical cues (e.g. lines on a floor) or verbal cues (e.g. counting 1-2, 1-2), to assist in restoring someone's gait can also help. Because of this difficulty many people living with Parkinson's perform poorly on standard memory assessments (e.g. MMSE) and consideration for a neuro-psychological evaluation to assess cognition should be given. Intermittent episodes of confusion can also relate to decreased CNS blood flow if the patient has low blood pressure - a common medication side effect.

Mood should also be assessed in Parkinson's; it is thought that up to 70% of people living with Parkinson's are affected by depression. Screening for sadness is an essential and ongoing part of nursing care. It is also important to be aware that as medication levels fluctuate throughout the day some patients may experience episodes of sadness, and many patients also experience episodes of anxiety.

The medications that are essential in treating Parkinson's may also cause some cognitive, or neuro-psychiatriac symptoms. Some patients may develop an impulse control disorder, often manifested by pathological gambling, hyper sexuality, hobbyism and impetuousness. This symptom is commonly associated with the use of Dopamine Agonists but on some occasions may occur in advanced Parkinson's or following Deep Brain Stimulation (DBS) surgery. Continual screening for this side effect is neccessary as many patients will not divulge that they are experiencing these symptoms. As some of these symptoms can be triggered by medication or surgery, patient education surrounding these symptoms is essential.

Hallucinations also occur in approximately 60% of patients. These are commonly visual but on occasions can take another form, e.g. auditory. Many patients are aware that they are having hallucinations and are able to effectively ignore them, however if they are disturbing or frightening they will need to be treated. Asking your patient if they are experiencing hallucinations and making their treating neurologist aware is important. Careful selection of neuroleptic medication is needed, with the drugs found to assist in managing these symptoms being Clozapine or Seroquel.

(NB: commonly used medications such as Haloperidol will worsen Parkinson's symptoms).

Communication, Speech and Swallow

Many people living with Parkinson's are affected by difficulties with communication. Speech may become slurred and often volume is affected. Using strategies such as pacing boards, and encouraging the patient to shout or use short sentences will help. Referring patients to a speech pathologist who will be able to assess and develop interventions to improve communication is an appropriate intervention.

People with Parkinson's often also develop micrographia, or small handwriting, which is related to tremor and stiff muscles. This symptom effects written communication and can be reduced through the use of cues, such as using lined paper and consciously getting the written letters to touch the top and bottom lines.

Swallow and saliva can also be affected by Parkinson's. The person living which Parkinson's may have a slower swallow and as this is a complex movement, the person with Parkinson's will need to concentrate more. Assisting with the use of strategies such as '1-2-3-SWALLOW' and ensuring that someone living with Parkinson's is given plenty of time to finish meals in an environment where distractions are reduced will help. The nature of saliva may also change in Parkinson's; with some people developing excessive salivation, and often the nature of the saliva alters, becoming thicker and stringy. Good and regular mouth care is important and referral to a speech pathologist who can develop a secretion management plan should be considered.

 

Nutrition and elimination

Monitoring the weight of the patient with Parkinson's is an important intervention. Reduced movement may clause some patients to gain weight, however most people living with Parkinson's lose weight. Weight loss may be related to nausea caused by medications which reduces appetite. Many people living with Parkinson's also have a reduced sense of smell which can impact upon appetite. Tremor and dyskinesia can also burn calories and cause weight loss.

As the affect of dopamine replacement therapy can be impacted upon by protein in the diet, ensuring that medications are given ½ hour prior to meals or 45 minutes following meals is important, especially for people who have had Parkinson's for some time.

One of the symptoms of Parkinson's can be slowing down of the gastrointestinal tract; this may result in increased episodes of reflux and very commonly constipation. Monitoring for both symptoms is important with many people living with Parkinson's needing regular antacids. Screening for constipation, and encouraging the patient to increase fluids and dietary fibre will assist, however patient may need to take a regular aperients. Be mindful that irritants such as coloxyl may cause some cholic type pain and osmotic agents such as Lactulose will only work if hydration is sufficient. Movicol is an aperient that has been found to be effective for many people living with Parkinson's and is currently subsidised on the PBS for Parkinson's.

Urinary elimination can also be affected and many patients experience urge incontinence. This symptom can be worsened if patients have low levels of medication. Ensuring that medications are given on time will help diminish this symptom. Referral to continence services, pelvic floor exercises and selective use of anti-cholenergic medications may also help. Some patients are also effected by nocturia, which is a difficulty common in patients who are also having some difficulty with low blood pressure, or episodes of postural hypotnesion.

Blood Pressure and Postural Hypotension

A common symptom which is exacerbated by medications is a lowering of blood pressure over time. This symptom commonly presents as episodic postural hypotension. The patient may complain of dizziness when changing posture and this often contributes to falls. The low blood pressure also reduces CNS , renal and gut perfusion, which can cause confusion, nocturia and worsen constipation.

Regular sitting and standing blood pressure assessment to monitor for this is important especially if the patient is on anti-hypertensive medication (which may need to be reduced). Some patients will also require medication to support blood pressure. A valuable nursing intervention is to educate the patient in regards to this and encourage them to take time when they are changing position. Some patients also report that having a rest in the afternoon where they lay flat, normalizing CNS and renal perfusion will also assist in managing symptoms.

 

Sleep

Sleep difficulties are very common in Parkinson's. Sleep may be interrupted by an inability to move or turn in bed due to low levels of medication. In this instance, use of satin sheets to increase glide and considering a bed stick can assist.

Many people with Parkinson's also are affected by REM sleep disorder. This occurs when entering the REM sleep phase but achieving a state of atonia does not occur. Often the movements that are experienced in REM sleep disorder may have a greater range and strength than when awake. A common side effect of medication used to treat Parkinson's is also developing nightmares and vivid dreams, which when combined with REM sleep disorder can disrupt both the patient and their bed partner's sleep.

Taking a history of sleep difficulties will assist in identifying difficulties. Some neuroleptic medications such as Seroquel can be of benefit in managing this symptom.

Sexuality

Parkinson's can affect intimacy and sexual function. As many people who are diagnosed with Parkinson's are over 65 years, some of the changes may be related to normal ageing. In males, a reduced libido and greater difficulty in maintaining erections can be experienced. In female's, libido can decline and vaginal secretions may reduce making intercourse unpleasant or painful.

The difficulties that Parkinson's can cause may be related to increased muscular rigidity, tremor and slowness of movement, reduced sexual desire, and difficulties in achieving and maintaining an erection. Increased sex drive, or hypersexuality can also occur in some people which may be related to dopamine agonist medication.

Discussing difficulties with sexuality with your general practitioner, neurologist, Parkinson's nurse or health team at Parkinson's Victoria is an important first step as counselling and discussing issues is important in dealing with changes in intimacy. Interventions such as changing position, changing the timing of sexual activity to take advantage of periods where symptoms are less troublesome, using vaginal lubricants and medications that can assist with achieving erections can also assist.

 

The team approach and the nurse's role:

The approach to managing a person living with Parkinson's needs to be multi-disciplined with each health care professional managing an aspect of the illness. The role of the nurse, whether in the community, hospital or aged care settings, is often sign posting patients to the appropriate professional, and then coordinating the different services. Assisting patients to manage medications and achieve concordance is a vital part of the nurse's role. When the person is an inpatient, this means ensuring they get their medication on time, and on discharge that the patient is aware of the importance of getting medication on time, and has developed an appropriate system (e.g. use of a Medication timer)

Managing Hospital stays

When a person living with Parkinson's is admitted to hospital, often the experience is difficult with the biggest complaint being that the staff did not understand Parkinson's and did not deliver medications on time. To minimise stress and discomfort, hospital staff should take a thorough history which includes timing of medications and the symptoms that the person regularly experiences. Understand that every person who is living with Parkinson's will have their own distinct symptoms and will need different medication regimes to control symptoms.

Wherever possible, people with Parkinson's should be allowed to self-medicate and remain in control of their own drugs.

If medication is managed properly, ‘off' periods can be minimized and the person with Parkinson's can maintain a greater level of independence and dignity.

If a patient needs to fast for a procedure it is worth asking treating medical staff it they are able to take their medication with a sip of water. If the patient is not able to continue with their medications, be aware that they will need more assistance and will be experiencing many Parkinson's symptoms - therefore increasing the level of nursing support provided is essential. Ensuring that the patient recommences medication as soon as possible following the procedure will increase patient comfort and mobility.

Quality care for Aged Care residents with Parkinson's

It is estimated that Parkinson's disease affects 5-10% of nursing home or respite residents. Whilst the majority of people with Parkinson's will continue to live at home for many years, increasing disability and dependency in advanced Parkinson's - when the care needs exceed the ability of their family or community to cope - may lead to admissions into a residential aged care facility. It is vital that nursing home staff are aware of the complexities of the condition and of the individual medication needs of every person with Parkinson's.

Listen to the family
Nursing and respite home staff should remember that members of the resident's family may have been in the role of carer for a significant number of years and have become ‘experts' in Parkinson's themselves. It is important therefore, to take what they say about the timing of Parkinson's medication seriously, as they will often know the drug regime inside out.

One of the most frequent concerns raised by the families of people with Parkinson's is that they are not listened to by care home staff.

Assessment of medication by specialist clinicians or nurses
Parkinson's drugs used may result in side effects after a number of years, so a person's medication regime needs to be assessed regularly, especially if there are significant side effects. In the later stages of Parkinson's, there may be the need to rationalize medications due to unwanted effects such as hallucinations. This is, however, very much dependent on the individual, and should be managed with help from a (Parkinson's) Neurologist.

Case study - Turning someone's life around
Mr Burns was diagnosed with Parkinson's at 82 years of age by a geriatrician who knew very little about Parkinson's. Having initially been placed on Sinemet 275mg twice a day, this was increased shortly afterwards to three times a day. His Parkinson's medication was reviewed four months later after he started to have falls, and he was placed on Ephedrine because he had developed postural hypotension. His falls continued and he developed hallucinations. Mr Burns' daughter was advised to place him in a nursing home.

The falls continued, and on several occasions Mr Burns sustained head injuries. His hallucinations also led to him ‘absconding' from the nursing home, and this led to him being threatened with eviction.

Finally the GP linked to the nursing home referred Mr Burns to a geriatrician with a special interest in Parkinson's and a neurologist. The medication was immediately reviewed. The delusions were considered to be a side effect of the Ephedrine and the amount of Sinemet he was on.

The neurologist recommended hospital admission for ephedrine withdrawal and Sinemet assessment. Within four weeks of being admitted into this new home, Mr Burns' Sinemet had been weaned down to 62.5mg three times a day, and he was no longer taking Ephedrine at all. His falls and his hallucinations had come to an end.

The experiences of Mr Burns demonstrate the importance of nursing homes and linked GPs turning to specialists early on, if the management of somebody with Parkinson's is proving difficult. In this case, once specialists in Parkinson's were made aware of Mr Burns' problem, they were able to review his original diagnosis and prescribed medication. Although his diagnosis is still not certain, (it is now believed to be mild Parkinson's with early Lewy Body dementia) Mr Burns' quality of life has improved significantly. Although he still lives in a nursing home, he is able to visit his daughter every week and to go to church whenever he chooses to with friends.

Parkinson's and dementia
As Parkinson's is a progressive condition, people's symptoms and medication needs will change over time. However, the development of dementia with Parkinson's disease perhaps presents the most difficulties for clinicians, patients and family members. It is understood that dementia will occur in some people living with Parkinson's, and it is often the onset of dementia that triggers somebody's move into a nursing home setting. While each person is unique and will experience dementia in their own way, symptoms typically include problems with memory, speech and perception.

Treating psychiatric, behavioral and dementia symptoms in Parkinson's
This is a specialist area and requires the involvement of a team with expertise in treating both Parkinson's and dementia. Dementia symptoms in Parkinson's can be exacerbated by side-effects of the Parkinson's medication, so sometimes reducing the drug dose or withdrawing a drug may help, e.g. hallucinations may be exacerbated by medications such as Comtan or Sifrol and by withdrawing these medications and often increasing the frequency or dopamine replacement therapy, may reduce the occurrence of hallucinations.

Exelon (Rivastigmine tartrate) has been given PBAC approval for the symptomatic treatment of mild to moderately severe dementia in patients with idiopathic Parkinson's disease (PD). The approval was based on the results of the EXPRESS study, a large-scale, randomized, well-controlled study involving 541 patients from 12 study centres in Europe and Canada. Many clinicians consider cholinesterase inhibitors, the class of drugs to which Exelon belongs, to be useful agents in practice for people with Parkinson's and dementia and have seen individual patients benefit greatly from their use. However, it's vitally important that such a treatment should only be considered and started by a specialist in Parkinson's.

Conclusion:
Parkinson's disease is a complex, individual condition which requires the specialist input of Parkinson's nurse specialists, geriatricians or neurologists. If a person's Parkinson's medication is mis-managed, the impact can be huge. His or her symptoms can spiral out of control, with a very negative impact on life. Nursing and respite home staff should listen to specialists and family members to ensure that an individual's medication is managed properly.

Getting Parkinson's medication right in these facilities can make a huge difference to the lives of people with Parkinson's. Parkinson's Australia also urges nursing and respite home staff to increase their understanding of other aspects of the condition, such as its impact on mobility, communication, eating and drinking, the bladder and bowel, sleeping and emotion. By increasing their understanding of the condition, staff can make a significant, and positive contribution to the lives of people with Parkinson's at this difficult stage of disease progression.

For more information, contact the Parkinson's organization in your state by phoning: 1800 644 189.