Objectives: Amyotrophic lateral sclerosis (ALS) is a fatal disease with unique demands on patients and carers. Patients and 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 restrictionsfland ’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. Conclusion: 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.
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist1980; 20: 649–655.
2.
Kosberg JI, Cairl RE, Keller DM. Components of burden: interventive implications. Gerontologist1990; 30: 236–242.
3.
GraÈsel E. Somatic symptoms and caregiving strain among family caregivers of older patients with progressive nursing needs. Arch Gerontol Geriatr1995; 21: 253–266.
4.
Horowitz A. Predictors of caregiving invovment among adult children of the frail elderly. Paper presented at the Annual Meeting of the Gerontological Society of America, Boston MA, 1982.
5.
Cantor MH. Strain among caregivers: a study of experience in the United States. Gerontologist1983; 23: 597–603.
6.
Johnson CL, Catalano DJ. A longitudinal study of family support to impaired elderly. Gerontologist1983; 23: 612–618.
7.
Horowitz A. Family caregiving to the frail elderly. Annu Rev Gerontol Geriatr1985; 5: 194–246.
8.
Evans RL, Bishop DS, Matlock AL, Stranahan S, Noonan C. Predicting poststroke family function: a continuiing dilemma. Psychol Rep1987; 60: 691–695.
9.
Kalb RC. Families affected by multiple sclerosis: disease impacts and coping strategies. New York: National Multiple Sclerosis Society, 1995: 1–39.
10.
Evans RL, Bishop DS, Ousley RD. Providing care to persons with physical disability: effect on family care-givers. Am J Phys Med Rehabil1992; 71: 140–144.
11.
The World Federation of Neurology. El Escorial World Federation of Neurology criteria of amyotrophic lateral sclerosis. J Neurol Sci1994; 124: 96–107.
12.
GraÈsel E, Leutbecher M. Ha È usliche Pflegeskala HPS zur Erfassung der Belastung bei pflegenden oder betreuenden Personen. Ebersberg: Vless, 1993.
13.
GraÈsel E. HaÈusliche Pflege dementiell und nicht dementiell Erkrankter. Teil II: Gesundheit und Balstung der Pflegenden. Z Gerontol Geriat1998; 31: 57–62.
14.
GraÈsel E. HaÈusliche Pflege dementiell und nicht dementiell Erkrankter. Teil I: Inanspruchnahme professioneller Pflegehilfe. Z Gerontol Geriat1998; 31: 52–56.
15.
Kosberg JI, Cairl RE. The cost of care index: a case management tool for screening informal care providers. Gerontologist1986; 26: 273–278.
16.
Adler C, Gunzelmann T, Machold C, Schumacher J, Wilz G. Belastungserleben pflegender Angeho Èriger von Demenzpatienten. Z Gerontol Geriat1996; 29: 143–149.
17.
The ALS CNTF Treatment Study (ACTS) Phase I–II Study Group. The amyotrophic lateral sclerosis functional rating scale. Arch Neurol1996; 53: 141–147.
18.
Krivickas LS, Shockley L, Mitsumoto H. Home care of patients with amyotrophic lateral sclerosis (ALS). J Neurol Sci1997; 152(Suppl 1): S82–S89.
19.
GraÈsel E. Belastung und gesundheitliche Situation der Pflegenden. Egelsbach, Frankfurt (Main), Washington: Verlag Dr Ha Ènsel-Hohenhausen, 1997.
20.
Mafullul YM, Morris RK. Determinants of satisfaction with care and emotional distress among informal carers of demented and non-demented elderly patients. Int J Geriatr Psychiatry2000; 15: 594–599.
21.
Young RF, Kahana E. Specifying caregivers outcomes. Gender and relationship aspects of caregiving strain. Gerontologist1989; 29: 660–666.
22.
Miller B, Cafasso L. Gender differences in caregiving. Gerontologist1992; 32: 498–507.
23.
Collins C, Jones R. Emotional distress and morbidity in dementia carers: a matched comparison of husbands and wives. Int J Geriatr Psychiatry1997; 12: 1168–1173.
24.
Payne S, Smith P, Dean S. Identifying the concerns of informal carers in palliative care. Palliat Med1999; 13: 37–44.
25.
GraÈsel E. Warum pflegen AngehoÈrige? Ein Pflegemodell fu Èr die haÈusliche Pflege im hoÈheren Lebensalter. Z Gerontopsychol psychiatrie2000; 13: 85–94.
26.
Mittelman MS, Ferris SH, Shulman E, Steinberg G, Levin B. A family intervention to delay nursing home placement of patients with Alzheimer's disease. JAMA1996; 276: 1725–1731.
