1. Background
Up to 50% of people living with MND experience symptoms of cognitive decline [43]. For those whose cognition is not affected, the communication of memories can be important when supporting holistic care provision and understanding the person as they once were. However, professionals can struggle to build relationships as caregivers often desire a task-orientated approach to care in an attempt to maintain some control over the disease trajectory [44].
2. Postposing encounters with professionals
Caregivers and people living with MND often delay contact with professionals, postponing these encounters European Journal for Person Centered Healthcare 2020 Volume 8 Issue 4 5 until they are exhausted [45]. This makes opportunities to build relationships difficult and opportunities to provide quality care (based on knowledge of the person as they once were) can be lost.
3. Biography (life story) work
Where opportunities are present, learning can be taken from the care of older people. Biographical work is acknowledged as respecting the intrinsic worth of a person, particularly in the context of decision-making [26,46]. In palliative care, a life review can improve the emotional well-being of the patient with terminal cancer, especially when a person feels out of control of their situation and is unable to adapt to change or distressed by previous life events [47].
4. The importance of the past
Acknowledging the importance of the past recognises that a person with MND has a unique history, culture, and practice. The care process involves professionals enabling the person to talk about their lived-through past. The expected outcome is a person living with MND who will be defining their identity and finding meaning in life as it has been lived.
If you are a person with MND and you want to talk about your lived through past, please get in touch to find out