In the late non-ambulatory phase, upper limb function and maintenance of good posture is increasingly difficult and complications are more likely.
It is important to discuss with the physiotherapist what types of equipment will best support independence and participation. Other adaptations may be needed to help with activities such as eating, drinking, toileting and transferring to and turning in bed.
Decisions related to steroid regimens, nutrition and weight management are reviewed and discussed with the care team.
Twice yearly monitoring of heart and lung function is recommended and often more intensive investigations and interventions may need to be implemented.
Many young men with DMD live fulfilling adult lives. It is important to proactively plan for a life as a supported but independent adult with all of the opportunities and challenges that this entails.
The following sections deal in turn with the ten different domains of care for DMD as described in Figure 1.
Information based on consensus statement (published in January 2010)