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Quality of Life and Depression in Patient-Giver Scenarios: Reference to Amyotrophic Lateral Sclerosis

  • A. Chiò
Reference work entry

Abstract:

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disorder of adult life, characterized by a progressive loss of motor function (upper and lower limb mobility, speech, swallowing, respiration). The progressive loss of independence that occurs as a result leads to an increasing need for help with every day life activities from informal or paid caregivers. Family caregivers are largely involved in this care, and bear an increased physical, psychological and emotional burden. Despite the severe impairment of physical function and the prospect of death, ALS patients have a relatively good “existential” or “personal” or “individual” quality of life (QOL) and a low rate of depression throughout the whole course of the disease. Conversely, their caregivers show a progressive rise in depression and decline of QOL paralleling the increased subjective burden of care. Caregivers’ burden of care is mostly related to personal and social restrictions and psychological and emotional problems. Coping strategies are different in ALS patients and caregivers, and these differences should be acknowledged by health professionals in planning support interventions. Respiratory problems have a particularly strong impact on the patient-caregiver couple, since  mechanical ventilation causes a deep burden on caregivers, reducing their QOL, increasing their responsibilities related to managing the ventilator, and constituting an increased financial burden. From the moment of the first communication of diagnosis caregivers go through a grieving process; this grief needs to be addressed because it influences their well-being, increasing the risk of psychological and emotional disturbances, and compromising the care of their patients.

Keywords

Amyotrophic Lateral Sclerosis Amyotrophic Lateral Sclerosis Patient Caregiver Burden Amyotrophic Lateral Sclerosis Case Assisted Suicide 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

List of Abbreviations:

AAC

 alternative-augmentative communication

ALS

amyotrophic lateral sclerosis

ALSAQ-40

ALS assessment questionnaire

ALS-FRS

ALS-functional rating scale

BDI

beck depression inventory

BHS

Beck hopelessness scale

CBI

caregiver burden inventory

DSM-IV

diagnostic and statistical manual – IV

EPQ

Eysenck personality questionnaire

GDS

geriatric depression scale

HADS

hospital anxiety and depression scale

HR-QOL

health-related quality of life

MQOL

McGill QOL questionnaire

MS

multiple sclerosis

NIPPV

non-invasive positive pressure ventilation

PEG

percutaneous endoscopic gastrostomy

QOL

quality of life

RIG

radiologically inserted gastrostomy

SEIQOL-DW

schedule for the evaluation of individual quality of life – direct weighting

SF-36

short form 36

SIP

sickness impact profile

SIP/ALS-19

sickness impact profile/ALS-19

SOD1

superoxide dismutase 1

ZDS

Zung depression scale

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Copyright information

© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • A. Chiò
    • 1
  1. 1.Department of Neuroscience, ALS CenterUniversity of TorinoNashvilleItaly

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