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Neurodegenerative Diseases Parkinson’s Disease
financially worse off. Furthermore, just over half of the care-givers felt The study concluded that PD imposes a vast strain on care-givers, and
that their own health had suffered since living with or caring for it was noted that more than half of those who responded experienced
someone with PD; for example, nearly nine out of 10 reported stress little or no understanding of their situation.
or anxiety. Table 3 summarises the health effects on care-givers who
reported deterioration in their physical or mental health. This care- Conclusions
giver burden was compounded by the fact that only 29% of carers in Although the last 30 years have witnessed major advances in the
the UK were aware of their right to a local services assessment that management of the MS of PD, a wide range of NMS such as depression,
could result in additional help being provided. sleep disorders and hallucinations continue to trouble PD patients and
have a negative impact on their QoL. In advanced PD in particular, NMS
Health Impact of Caring for tend to dominate the clinical situation. Fortunately, NMS are now
Parkinson’s Disease Patients receiving greater attention.
11
The PDNMG continues to play a prominent
Several scientific studies have investigated and confirmed care-giver role in this work and its NMSS/NMSQuest questionnaires have proved to
burden (defined as the extent to which informal care-givers perceive be valuable instruments for building up the information bank
that their health and social life are being adversely affected because on NMS. They have even indicated that, contrary to common belief,
of their care-giving) in neurodegenerative dementia populations as many NMS occur early in PD. Furthermore, some problems, e.g. olfactory
well as in studies on traumatic brain injuries. Even care-givers of deficit, REM sleep behaviour disorder and male erectile dysfunction,
patients with less severe cognitive impairment have been observed to may even pre-date a diagnosis of PD based on motor signs.
12
be more prone than normal to depression and associated symptoms.
In PD, we are now beginning to see more studies examining the While it is not the intention of this article to discuss therapeutic
impact of the disease on informal care-givers. The recent study by strategies, we can note that continued progress with continuous
Lökk, for example, evaluated care-giver strain in terms of different dopaminergic stimulation should help decrease or eliminate severe
psychosocial domains and disease duration.
10
motor complications and thus alleviate one of the biggest concerns for
care-givers (see Figure 2). In addition, many NMS, e.g. depression,
The study comprised a cross-sectional telephone interview survey constipation, nausea, restless legs and urological problems, can be
using a structured questionnaire of 451 care-givers randomly selected treated by traditional means; however, harder-to-treat symptoms may
from the registry of the Swedish Parkinson’s Disease Association. require new, non-dopaminergic pharmaceutical preparations not yet
Four hundred and four care-givers with a mean age of 68.5 years introduced. This may well go hand-in-hand with the search for
responded. Ninety-eight per cent were spouses (62% women, 38% treatments that slow neurodegeneration.
men). Although the mean general health condition of the care-givers
was regarded as satisfactory, disease-related stress was reported by Finally, the PD patient and care-giver situations are inevitably
61% and insufficient sleep by 36% of the responding care-givers, with intertwined. Recognising care-givers as a group at risk of poor health
the latter symptom showing a significant increase with disease and thereby providing them with better support will ultimately benefit
duration. Daily physical health problems included tiredness and sleep the QoL of their patients as well. n
disturbance (more than 30%), hypertension (27%), muscle strain,
headache and fatigue (17%) and gastrointestinal problems (14%).
Susanna Lindvall is Vice President of the European Parkinson’s Disease Association
(EPDA), President of the Swedish Parkinson Foundation, a member of the steering
The greatest worry expressed by the carers was not being able to committee of the Swedish Parkinson Academy and a member of the Human Stem Cell
take care of the PD patient (46%). This was followed by patient
Research Committee of the Karolinska Institute in Stockholm. She is the co-author of
several books and articles about Parkinson’s disease.
neuropsychiatric problems (25%) such as impaired cognition and
hallucinations. The most troublesome patient symptoms were motor Johan Lökk is a Senior Lecturer at the Institute of Neurobiology, Care Sciences and
dysfunction (58%), but NMS such as impaired memory (33%),
Society at the Karolinska Institute in Stockholm. He is also a Senior Consultant
and Chief Physician in the Geriatric Department of Karolinska University Hospital in
slowness of mind (30%), sleep disturbance (29%) and psychiatric
Stockholm. He is the author of many scientific papers and books on Parkinson’s and
symptoms (13%) were all regarded as causing carer strain. Alzheimer’s diseases. Professor Lökk completed his specialist training in geriatrics in
Furthermore, many of these symptoms were experienced regularly.
1983 and internal medicine in 1987, received his PhD in 1991 and was appointed
Associate Professor in 1998.
Impaired memory was also a cause of carer worry: 37% of care-givers
had to remind patients to take their daily anti-PD medication, for
Michael Wainwright is a medical writer with a special interest in Parkinson’s disease.
example.
He has a BSc in microbiology from the University College of Wales.
Figure 2 summarises the PD patient symptoms that gave
carers most cause for concern.
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