your patient has Parkinson's" fact sheet: click here
Quality care for residents
It is estimated that Parkinson’s disease affects 5-10% of Nursing or Respite home residents. Whilst the majority of people with Parkinson’s will continue to live at home for many years, increasing disability and dependency in the palliative stage when the care needs exceed the ability of their family or community to cope, frequently lead to admissions into care. It is vital that nursing home staff are aware of the complexities of the condition and of the individual medication needs of every resident with Parkinson’s.
Parkinson’s disease is a complex, progressive neurological condition resulting from a loss of dopamine in the brain. The three main symptoms are tremor, muscular rigidity or stiffness, and bradykinesia (slowness of movement), with other symptoms including tiredness, depression, and difficulties with handwriting, speech, and balance.
Nursing and Respite homes and medication
Nursing and Respite care homes have been under the spotlight recently over the ways in which they handle and administer medication. Reports showed mistakes happening, such as people being given the wrong drugs or doses or someone else’s medication. In some cases, residents were not administered any medication at all, despite having been given prescriptions from their GPs. Parkinson’s Australia is hugely concerned by this, as the proper management of the correct medication for people with Parkinson’s is crucial to their everyday lives.
Parkinson’s and medication
As there is no cure for Parkinson’s at present, the most common treatment is drug therapy to manage the symptoms. Over time, each patient’s drug regime can become increasingly complex as the range of symptoms and side effects becomes more extensive.
Main classes of drugs
There are a number of different types of drugs prescribed to people with Parkinson’s.
The main ones prescribed are:
- Levodopa therapies
- Dopamine agonists
- COMT inhibitors
- MAO-B inhibitors
- Combination therapies
Nursing and Respite home staff administering drugs to patients should be aware of the table below which indicates drugs to be avoided with Parkinson’s medication.
DRUGS TO BE AVOIDED WITH PARKINSON’S MEDICATION
This table of contraindicated drugs is not exhaustive and staff should check with a doctor:
- 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)
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 differential, 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 the individual may experience increasing periods when the effect of the most recent dose wears off before the next one is due or has begun to work.
Unwanted involuntary movements 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.
Other problems can occur too – sleep can become disturbed, bowel and kidney function and digestion can be affected and mood swings can also be triggered.
Wherever possible, people with Parkinson’s should be allowed to self-medicate and remain in control of their own drugs. If this is not possible due to physical or mental incapacity, every effort needs to be made by care home staff to ensure that medication is given to patients at the correct time and at the appropriate dose for them.
If medication is managed properly, ‘off’ periods can be minimised and the person with Parkinson’s can maintain a greater level of independence and dignity in the care home.
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 become ‘experts’ in Parkinson’s themselves. It’s 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. This can have serious repercussions.
Case study: When not listening had serious repercussions
Mrs Evans took her husband, who has Parkinson’s, to a home for six days of respite. She wrote down the list and specific times of his Parkinson’s and other medication and a list of the help he needed, such as with feeding and washing. During the first afternoon of his stay, Mrs Evans received a phone call to say that she hadn’t taken all of her husband’s medication to the care home. She was told that another drug was on the prescription – bisacodyl. Despite her assurances that her husband didn’t need it and hadn’t taken it for a long time, the care home staff insisted that she bring the dugs to the home. Mrs Evans was reassured that her husband would only be given this medication if he was constipated.
At the end of six days, Mr Evans was in a terrible state. He was terribly weak and could no longer walk. It transpired that he had been given 10 bisacodyl tablets, which resulted in a significant decline in his physical condition, and bed sores and burns from lying in loose motion. Mr Evans died a short time afterwards.
This series of events demonstrates how important it is that care home staff listen to the close family members of residents and ensure that important information such as this is passed on to all members of staff involved in the administration of medication.
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 withdraw dopaminergic drugs due to lack of drug efficacy and increasing sensitivity 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 disease. 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 now understood that dementia will occur in up to 80% of Parkinson’s cases, 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, behavioural 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 anti-Parkisonian medication, so sometimes reducing the drug dose or withdrawing a drug may help, particularly with problems such as hallucinations.
However, a reduction in the dose or the withdrawal of some drugs can mean that the symptoms of Parkinson’s are not as well controlled as they were before. Exelon (Rivastigmine tartrate) has recently been licensed for the symptomatic treatment of mild to moderately severe dementia in patients with idiopathic Parkinson's disease (PD). Licensing 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.
Parkinson’s disease is a complex, individual condition which requires the specialist input of Parkinson’s Disease Nurse Specialists, geriatricians or neurologists. If a person’s Parkinson’s medication is mismanaged, the impact can be huge. His or her symptoms can spiral out of control, with a very negative impact on his or her 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.
To find out more
Contact the Parkinson’s Organization in your State by phoning 1800 644 189.
Download information sheets on any aspect of Parkinson’s from the Parkinson’s Australia website: www.parkinsons.org.au and then linking to your own State web-page
Order a ‘Get it on time’ information pack about the timing of medication in Parkinson’s. To order a pack, Tel: 1800 644 189