Comments on “Home care versus institutionalization: family caregiving and senile brain disease”

Abstract

Miriam Hirschfeld’s paper ‘Homecare versus institutionalisation: family caregiving and senile brain disease’ was published in the International Journal of Nursing Studies in 1983 (Hirschfeld, 1983). This was a seminal paper and has been widely cited over the past 20 years. Although Dr. Hirschfeld worked in the Department of Nursing at Tel Aviv University, the study was undertaken while she was a student in the United States of America. Hirschfeld sets out the background to the study by pointing out that the increase in the ageing population has an obvious relationship with the increase in the number of people diagnosed with senile brain diseases such as Alzheimer’s disease. This trend has not slowed down in the intervening years and the elderly population continues to increase. A recent study indicated that the proportion of Europeans aged 65 years or above will increase from 15 per cent of the population to 20 per cent between 1995 and 2020 and that by 2020, one in four European Community citizens will be aged 60 years and above (Pacolet et al., 1999). However, this pattern is not unique to Europe. According to The World Health Organisation (WHO, 1998), ‘‘By 2025 there will be more than 800 million people over 65 in the world, two thirds of them in developing countries’’ (p. 5). One of the reasons for this is the decreasing trend in older age mortality. Ironically, as Hirschfeld pointed out this trend has lead to an increase in morbidity, especially senile brain disease. The growth in the number of older people worldwide is also a major factor influencing the growth in demand for long-term care. Demographic developments have implications not only on the numbers likely to be in need of care, but also for the means by which care is provided, a key element in Hirschfeld’s paper. She stated, ‘‘Caring for a demented person at home exacts a heavy toll from the families’’ (p. 23). Recent research by Nolan (2001) in the United Kingdom and Lane et al. (2001) in Ireland illustrated that in the 21st century family carers remain a dis-empowered and a poorly resourced group. Hirschfeld aimed to explore ‘‘the factors influencing a family to continue caring for an old person with irreversible senile brain disease, versus those leading a family to consider institutionalisation’’ (p. 23). The most significant factor she uncovered was ‘mutuality’, which centred on the caregiver’s ability to obtain gratification and benefit from the relationship with the care recipient. She found that some caregivers experienced high mutuality due to a strong and loving relationship with the care recipient. Others experienced high mutuality due to the relationship having reciprocal benefits for both parties (e.g. financial or housing). These caregivers were less likely to consider the option of institutional care. In contrast, Hirschfeld found low or no mutuality among some caregivers in her sample. In these circumstances, the relationship between the caregiver and the care recipient had broken down, often leading to bitterness and resentment. These caregivers were more likely to consider institutional care for their family member. It could be argued that Hirschfeld’s findings have greater relevance today. The pressures of family life in western societies have amplified and increasingly both partners work. There has also been a reduction in family size and a greater number of single parents and unmarried adults (McKenna et al., 2001). These issues affect the availability and willingness to care (Keady, 1999). In addition, the growing mobility of the workforce contributes to the dispersal of the children of older people over a wide geographical area. This and the wellpublicised decline in the birth rate (EuroStat, 1999) means that there are fewer offspring available to care for their older relatives and often the demand for care outstrips the supply of carers. This means that there is increasing pressure on some carers to care for more than one elderly person (Kane and Penrod, 1993). In the past, nursing homes were often synonymous with workhouses or institutions (a term Hirschfeld ARTICLE IN PRESS