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There are an increasing numbers of adults with an intellectual disability living into middle and old age, and often these adults are cared for by their parents in the family home. Individuals who live in other accommodation generally still receive both practical and emotional support from their parents. This review of the literature details some of the demands and strains experienced by parents of adults with an intellectual disability, and examines factors that research suggests may affect parents' capacities to cope with these.
Two changes in the lives of individuals with an intellectual disability, increased longevity (Adlin, 1993; Janicki, Dalton, Henderson, & Davidson, 1999) and the shift from institutional care to living with family, have had enormous implications for Australian parents of adults with an intellectual disability. Parents of children with an intellectual disability typically care for their child at home, and then continue to provide care, generally in the family home, until they die or are no longer able to offer this support because of their own illness or frailty (Beange & Taplin, 1996: Bigby, 2000). Extended caregiving is the term often used to describe caring for offspring with a disability into adulthood.
According to the most recent data published by the Australian Bureau of Statistics (2003), there are 38,100 parents aged over 45 years whose son/daughter with a disability lives with them, with 4,100 parent carers who are over 65. These data do not distinguish between those parents who care for an adult child with an intellectual disability and those whose child has a different type of disability, however based on data from the Australian Institute of Health and Welfare (2006) it is likely that the majority of parents engaged in extended caregiving have a child with an intellectual disability. A large majority of primary carers of adults with an intellectual disability are mothers, even when both parents are retired (Essex, Seltzer, & Krauss, 2002). The published literature typically focuses on mothers' experiences and uses mothers as informants and so the following review of issues related to the experiences of parents of an adult child with an intellectual disability reflects this.
Why do parents continue to provide care into their own old age?
There are a number of reasons parents give for their continued co-residence with their adult child with an intellectual disability. These include the belief that it is their responsibility to provide what they see as necessary for their son/daughter (Krauss & Seltzer, 1998; Llewellyn, 2003) and that this is the preference of their child (Krauss & Seltzer, 1998). This sense of parental responsibility often occurs alongside the belief that there are no alternatives (or that the alternatives are unacceptable) (Krauss & Seltzer, 1998; Llewellyn, 2003). In addition to these motivations, parents often see mutual benefits to their situation, including receiving companionship, assistance with household tasks, and emotional support (Grant, Ramcharan, McGrath, Nolan, & Keady, 1998; Heller, Miller, & Factor, 1997; Krauss & Seltzer, 1998; Rimmerman & Muraven, 2001). In some situations, the adult child also provides care to elderly parents, assisting them to stay in their own home (McCallion, Janicki, & Grant-Griffen, 1997). As well as these more external aspects, parents also identify personal benefits from their caring role, including personal growth and improved family relationships (Muirhead, 2002; Schwartz, 2003). It is important to recognise that, even in situations when parents no longer co-reside with their adult child, they generally remain very involved (Seltzer, Greenberg, Krauss, & Hong, 1997), with many continuing to provide assistance to meet their child's daily care needs (Llewellyn, 2003). Neither the satisfactions nor stresses of caring necessarily end when the child leaves the family home.
Two conflicting hypotheses have been proposed regarding parental response to the demands of extended caregiving. The first, called the 'wear and tear' hypothesis, suggests that parents become worn down by the accumulated demands of caregiving and both their physical and psychological resources become depleted (e.g., Johnson & Catalano, 1983). The second hypothesis is that parents develop skills as a result of their experiences and so make a better adjustment to their circumstances as time goes on (Olson et al., 1983). There would appear to be more empirical support for the latter proposition, however, only longitudinal investigations are capable of fully testing these hypotheses because of the different experiences of different cohorts of parents.
Several cross sectional studies have found older parents of a child with a disability to be coping at least as well as younger parents. For example, McDermott et al. (1996) found that, of parents with an adult child with intellectual disability, those who were over 60 years of age were functioning as well as those who were under 60, and Grant and Whitell (2000) reported an increase in the use of cognitive coping strategies as parents aged. There is a great deal of variability between individuals in their capacities to meet the demands of caring for an adult child with a disability, however. There is also variation within individuals, i.e., individuals may cope differently at different times or under different circumstances, although this aspect is less well understood. A number of parents experience quite deleterious outcomes as a result of their caring responsibilities, and this is taken up below.
Demands facing parents of an adult child with an intellectual disability
There are a number of demands that are faced by parents of an adult child with an intellectual disability. Some of these are also faced by parents whose children follow a typical developmental pathway (although generally the demands are experienced over a shorter time span), and others are shared by carers in different circumstances, for example, one spouse caring for another. Many parents need to provide assistance with the daily tasks associated with living--feeding, dressing, toileting, and mobility. Physical health …