Work and recreational changes among people with neurological illness and their caregivers

Background. Progressive neurological illnesses alter the health and well-being of people who experience them, and frequently lead to changes in the activities of both patients and their carers.

Purpose. The current study investigated changes in work and recreational activities among people with four of these illnesses.

Method. In total, the following numbers of people with neurological illnesses and their carers participated in the study: 28 with multiple sclerosis; 27 with motor neurone disease; 31 with Parkinson's; and 24 with Huntingtons disease. In addition, 28 professionals who worked with these populations participated in the study. Individual interviews were conducted with each of the above respondents to determine the impact of the neurological illness.

Results. The results demonstrated a high level of agreement from each of the participants. Most of the people with the illnesses and many of the carers had reduced their level of paid work. Generally, all groups of respondents perceived these changes as being negative. Changes in recreational activities were also seen to be primarily negative.

Conclusions. These results are discussed in terms of proposed prevention and intervention programmes to prepare patients and their carers for the changes that result from the neurological illness, strategies to stay at work longer and to help them develop alternative strategies to assist them in filling the gap left in their lives that was previously occupied by paid work.