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Providing holistic care for the individual with ALS: Research gaps and future directions 

Providing holistic care for the individual with ALS: Research gaps and future directions
Chapter:
Providing holistic care for the individual with ALS: Research gaps and future directions
Author(s):

Francesco Pagnini

and Zachary Simmons

DOI:
10.1093/med/9780198757726.003.0017
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date: 22 February 2020

Much progress has been made in understanding, measuring, and managing quality of life and psychological well-being in individuals with ALS, but there are gaps. Anxiety and depression have been carefully explored in the ALS literature, but coping, resilience, sexuality, intimacy, and end-of-life concerns require more attention. Psychological interventions have been under-explored. Further research on mindfulness, hypnosis, and on complementary and alternative medicines is needed, with particular attention to early evidence that psychological interventions may lead to physical as well as psychological benefits. Attention to the psychological consequences of cognitive dysfunction in ALS would greatly benefits patients and caregivers. The impact of technology needs further study. Rapid advances in genetics, brain-computer interfaces, and new treatments, communicated virtually instantaneously via the internet, will inevitably contrast with the slower pace of implementation, resulting in surges of hope and disappointment. Optimal care is holistic, incorporating both physical and psychological assessment and management.

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