Parkinson’s disease is characterised by slowness of movement, a feeling of stiffness and shaking. It is most commonly diagnosed when an individual is in their 60s. Parkinson’s is more common with increasing age and amongst men. The majority of people with Parkinson’s live in their own home with a relative, who often plays a significant role in helping them with activities such as washing, dressing, cleaning and cooking. These relatives are often referred to as ‘informal caregivers’ because they have not had any ‘formal’ training for this role. Amongst people with Parkinson’s, falling and memory problems are both very common, and increase with frequency and severity as time progresses. Those with memory problems are at increased risk of falling.
Informal caregivers of people with Parkinson’s have reported that they feel unsupported in their caregiving role; this often results in high levels of depression and stress. Caregivers of people who fall or who have memory problems have higher rates of stress. When caregiver stress is not managed, it can lead to the person with Parkinson’s needing to move to a nursing home. This has considerable personal and financial consequences for both the person with Parkinson’s and the caregiver.
Previous studies of programmes for people with Parkinson’s have rarely been able to show a reduction in the number of falls. However, they have shown promise in their ability to improve a patient’s sense of well-being, or their quality of life. Many of these studies have not included participants with memory problems, which form a large proportion of those with Parkinson’s, and they have rarely looked at the effect on caregivers.
To assess how useful an intervention will be in the real world, it is important that these groups of people are included in research. We will include both of these groups within our study. In other health conditions, promoting the involvement of patients in their care has been shown to be a cost-effective way to improve quality of care and patient distress.
We will distribute a self-management paper-based guide for people with Parkinson’s who fall and their caregivers, and will seek feedback about its content, usability, acceptability and format after a period of three months. Our study will provide a preliminary assessment as to whether the guide has any impact on the sense of well-being (quality of life) and concerns of falling in people with Parkinson’s, or on the difficulties that caregivers experience in relation to their caregiving role.