Burden of care in amyotrophic lateral sclerosis.
OBJECTIVE
Amyotrophic lateral sclerosis (ALS) is a fatal disease with unique demands on patients and carers.


METHODS
The total burden of care and burden components in 37 ALS carers were measured using validated questionnaires. Furthermore, influencing factors (functional impairment of the patient, additional carers, participation in support groups) were assessed.


RESULTS
The mean total burden of care for ALS was low compared with dementia, mixed neuropsychiatric and internal diseases, but was correlated with functional impairment (P = 0.003). The main burden components were 'personal and social restrictions' and 'physical and emotional problems'. Problem behaviour of the patients was low in general, but was higher in carers participating in support groups (P = 0.002). Carers supported by additional carers had higher strain.


CONCLUSIONS
The low burden of ALS carers may be caused by the low incidence of problem behaviour in ALS patients. However, if problem behaviour exists, carers participate more often in support groups, indicating the need for assistance. The burden of care increases with the functional impairment. Support for the carers has to start sooner.
Hecht
Martin J
MJ
Department of Neurology, Centre of Neuromuscular Diseases, University of Erlangen-Nuremberg, Erlangen, Germany. martin.hecht@neuro.imed.uni-erlangen.de
Graesel
Elmar
E
Tigges
Sebastian
S
Hillemacher
Thomas
T
Winterholler
Martin
M
Hilz
Max-Josef
MJ
Heuss
Dieter
D
Neundörfer
Bernhard
B
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000451:nursing* / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D011788:Quality of Life; D012944:Social Support