Parkinson's Disease: Moving ForwardPage 14 of 17

12. Caregivers of PD Patients Weigh In

The impact of maintaining a caregiving role for people with Parkinson’s disease has been largely restricted to the assessment of caregiver burden and caregiver strain. Several studies have suggested that increased burden and strain are associated with the duration of caring; the physical health of the patient, including their increasing disability and propensity to falls; patient psychiatric symptoms, including behavioral disturbances (eg, impulse control disorders, apathy); the age of the caregiver; and caregiver mood (Morley et al., 2012).

In a recent British study, Morley and colleagues (2012) assessed the factors influencing the quality of life of those caring for a person with PD. The study identified a number of factors that significantly influence the caregiver’s quality of life:

  • Female caregivers reported significantly inferior quality of life compared to male caregivers.
  • Caregivers with a long-term condition themselves experience significantly inferior quality of life when compared with healthy caregivers.
  • Caregivers are significantly affected if the person they are caring for has cognitive impairment and impaired mobility.
  • Duration of caring and the age of the caregiver affect caregivers, with older caregivers experiencing inferior quality of life.

Caregivers and Medication Adherence

Although a person in the early stages of PD may be completely independent, in the advanced stages a considerable amount of support is usually needed and many people with PD receive support through informal caregivers such as a spouse or family member. This often extends to medication management, particularly aid in taking medications (Daley et al., 2011).

For a caregiver, the responsibility for the timely management of a relative’s antiparkinson medication is essential, and the consequences of non-adherence are substantial. Poor adherence results in the wearing off of the treatment effect, which can significantly increase motor dysfunction. Over-medicating, particularly with dopamine, can result in severe dyskinesia, potentially leading to the development of impulse control disorder and even to psychosis (Daley et al., 2011).

Not surprisingly, medication adherence can be poor in people with PD, especially when cognitive impairment, anxiety, and depression are present. Reported medication adherence in PD was as low as 10% in one study, with 76% acknowledging mistimed or missed doses. For management of drugs with multiple daily doses, only 3% fully adhered to medication regimens (Daley et al., 2011).

Levodopa remains the most efficacious and widely used treatment for Parkinson’s disease, with the majority of patients requiring levodopa therapy at some point during the course of their disease. As the disease progresses it can become increasingly difficult for patients to achieve clinical benefits, and they require increasingly higher doses of levodopa. This may lead to adherence-related issues as a result of the increased pill burden and complex dosing schedules. Failure to manage the medication regimen effectively can contribute to functional impairment, decreased quality of life, and increased motor symptoms. Maintaining patients on their therapy is a key issue for the management of PD (Sethi et al., 2009).

Hospital Failures in Medication Management

To try to understand the reasons for poor medication adherence, a structured survey of 20 people with PD and their caregivers in New Zealand turned up five themes that accounted for possible adherence errors both at home and during hospitalization. Survey participants reported particular problems with abrupt withdrawal of PD medications, wrong or vague instructions from healthcare providers, failure of hospital staff to listen to the caregiver’s knowledge, lack of knowledge of PD on the part of healthcare providers, and caregiver difficulty remembering to give medications at the required time.

Causing Abrupt Withdrawal

One caregiver described how the benign hallucinations her husband suffered with PD worsened when he was admitted to the hospital for hip fractures. She attributed this sudden change to the morphine administered for his two broken hips. However, the hospital ascribed the exacerbation to his amantadine and “made him go cold turkey.” Amantadine was reinstated only when she reminded staff that the abrupt withdrawal of amantadine could aggravate PD and its mental manifestations. Other participants spoke of medication “omissions for several days” in hospital, even though it is “imperative that none of the Parkinson’s medications be halted” (Buetow et al., 2012).

Instructions Wrong, Vague, or Misread

One patient stated that for two years her community pharmacy, despite “a lot of the staff changing all the time,” had dispensed two PD medications (Sinemet and entacapone) to her with the labeled instruction: “Take 6 tablets once daily as directed.” Recognizing this instruction as a dangerous mistake, she reported instead taking 1 tablet of each medicine every 3 hours (Buetow et al., 2012).

Other wrong instructions were given in non-neurological hospital wards through the mischarting of dosing frequencies. According to one participant, herself a practice nurse, this error led to her father receiving doses at wrong times over 2 days. Another patient described how “the charting would change (for her husband with PD). They would have 8.00, 8.30, and I would say, “He is supposed to get his pergolide on a full stomach.” “Oh, no, no, it’s charted for. . .” (Buetow et al., 2012).

In other instances, information was not wrong but misread: one caregiver indicated that hospital staff “just glanced down” at her partner’s chart, getting “in the routine of giving him one without checking it thoroughly.” She reported that the neurologist had assured her that the chart was correct, and that “human error” accounted for her daily observation that the Sinemet dosage was short and given “late, anything up to three-quarters of an hour” (Buetow et al., 2012).

In community settings, however, the problem was sometimes the vagueness of dispensing instructions. One caregiver reported how her family had misunderstood instructions to take a medication “4 times a day.” They had thought this indicated a need “to time the (PD) medicine to 4 tablets over 24 hours” even though this led to “big lows and big highs” and interrupted their sleep for several months. Based on advice from the prescriber, the Parkinson’s Society field officer explained to the family that “you need to give them during the daytime” (Buetow et al., 2012).

Devaluation of the Caregiver and Family

Several participants suggested that hospital staff wanted to take control of the PD medications and did not seek or respect the insights or perspective of the person with PD or their family. According to one caregiver, timing errors could have been avoided “if they (hospital staff) had only asked me—I had the latest scrip.” And when patients or caregivers offer information, “nobody listens, like you try and tell them something and they think they know better all the time.” This was despite people with PD having experience of what worked best for them: “if you are taking them every day, you know when you need to take them; your body tells you”, so “it is not really a sort of arranging it at the same time every day” (Buetow et al., 2012).

It was felt that staff commitments to change the timing could not be relied upon: “They would say, “Oh yes, we will do that tomorrow” but it never happened.” Another participant concurred: “They are good at talking on, rather than listening. They did not like being corrected, any of them. I felt that they would have been happier if I had not been there and chased them up on times.” Indeed, some staff were perceived to be patronizing. One caregiver said that her partner with PD “was dismissed” by a nurse who “was very abrupt and ignored him and virtually walked off.” This was despite—and perhaps contributed to by—his PD making him “slightly slower to respond” and asking of “him quite a bit of courage to speak out.” Another caregiver reported that “they will talk to him and they will ignore me” (Buetow et al., 2012).

Lack of Knowledge or Caring Behavior

Participants suggested that staff “do not always understand the way the (PD) medications work” and “were not aware, I think, of the need for Parkinson’s people to have their medication at a given time”; they “regard the times as a suggestion, an indication of when you might get them.” One participant, a nurse, acknowledged that she was similarly inclined until she developed PD: “I nursed a lot of [PD patients] in the rest homes and hospitals that I have worked in and I was not aware really of the importance.” She added that staff “admitted afterwards that it was different for them—having a Parkinson’s patient—and a big learning curve” (Buetow et al., 2012).

“Part of the problem,” suggested one caregiver, “is they are short staffed they are rushing round all over the place and medication times fall by the wayside.” As a consequence, “If they were busy, it [the charted times] did not matter and there was no check whether he [her husband] took the pill.” One survey participant, however, questioned the attribution to staff shortages: “There were numerous staff standing around—you could hear conversation and it was not medical conversation, it was more casual talk—so it seems that they could not have given a damn” (Buetow et al., 2012).

Lay Forgetfulness

Timing errors were commonly ascribed to lay error, both by people with PD and their caregivers: forgetting to administer the PD medication on time, for example, because “I am busy doing [something]”; forgetting to use the timer that reminds them when to take their medication; and forgetting “whether I have taken it or not.” These memory errors were reported to take place only occasionally.

Consequences included taking late or extra doses of Sinemet to manage motor fluctuations (and then adjusting the timing of the remaining doses) but tending to miss the forgotten doses of other, less potent antiparkinson medications: “I often do forget the ropinirole and that is not such an issue—I just skip that dose” and “I would suddenly think ‘Oh, I forgot the amantadine and the pergolide and it is now 3.30, there is no point in having it’” (Buetow et al., 2012).