Stuart Wark and Michele Wiese write that as the life expectancy of individuals with an intellectual disability has risen there is an increased likelihood of experiencing the death of a significant other such as a parent, friend or housemate
Historically, there has been a perception that many individuals with an intellectual disability may not have had the necessary understanding of social relationships to feel grief or the capacity to comprehend loss associated with the death of a family member or friend (Speece and Brent 1984). Much of this argument has been based upon the perception that people with an intellectual disability were unable to establish the close social and personal relationships with other people that underpin later feelings of grief following a death (McDanial 1989). Oswin, amongst others, argued strongly that this viewpoint was overly simplistic, and that it did not take into account personal differences and varying levels of individual capacity. Though a person’s disability may affect her/his intellectual development, it does not necessarily follow that emotional understanding is similarly impaired (Oswin 1991).
In support of the notion that individuals with an intellectual disability understand and form deep social relationships, some early research showed that they share more similarities in their grief reactions with the general population than differences (e.g. Myers 1980). Although level of intellectual disability may impact the individual’s ability to understand concepts such as the permanency of death (McLoughlin 1986), and grief may be delayed in some individuals (Kitching 1987), recent studies have shown that many people with intellectual disability do understand the concept of death (McEvoy, MacHale and Tierney 2012). Further, there is strong evidence to suggest that they are willing to talk about the issues associated with it (Forrester-Jones 2013; Read and Todd 2010). Dodd, Dowling and Hollins (2005) noted in their review of grief research literature that ‘people with IDs are not a homogenous group: there are wide differences in experience, environment, personality and ability’ (p. 541). However, individuals with an intellectual disability are capable of at least partially understanding the concept of death and therefore, are able to be supported to prepare for an impending bereavement (McEvoy, Reid and Guerin 2002).
Coping with bereavement
The life expectancy of individuals with an intellectual disability has risen over the past few decades (Coppus 2013), a natural consequence of which is the increased likelihood of experiencing the death of a significant other such as a parent, friend or housemate (Blackman 2003). The death of a loved one by people with an intellectual disability has been linked to a variety of grief symptoms including anger and irritability, anxiety and ongoing problems associated with loneliness and sadness (Clute 2012; Harper and Wadsworth 1993; Hollins and Esterhuyzen 1997). Dodd et al., (2008) in a study with carers, reported that people with an intellectual disability who had lost a parent within the previous two years displayed various complicated grief reactions, including difficulty in carrying out normal activities, personal upset when thinking about the deceased, feeling guilty if they enjoy themselves, insecurity, and losing trust in other people.
Practical examples from the field clearly illustrate the experience of grief by people with an intellectual disability arising from loss. A service manager from a rural area in Australia reported the story of three individuals with intellectual disability who had lived together for over of thirty years (Wark, 2008). One of the trio developed dementia and suffered a fall, resulting in hospitalisation. The individual was subsequently moved to the closest residential aged-care facility, in a town over an hour away, and died soon afterwards. The two remaining people experienced considerable grief and confusion during the initial stages of their housemate’s dementia, the residential aged care placement, and subsequent death. They were uncertain why their friend’s personality had changed, why she/he could not continue to live in their home, and finally where she/he had gone after death (Service Manager, pers. comm., 15 December 2008).
In the same way that children are often sheltered from the reality of death, people with an intellectual disability are not always informed when close family members are dying and are sometimes denied the opportunity to grieve normally (Blackman 2003; Doka 2010; Read 2008). Studies have shown that people with an intellectual disability do experience grief when a friend or family member passes away (Dodd, Dowling and Hollins 2005; MacHale and Carey 2002), and that their grief reactions are not significantly different to that expected within the general community (McRitchie, McKenzie, Quayle, Harlin and Neumann 2013; Stoddart, Burke and Temple 2002). Participating in the mourning process, attending the funeral and wake, and being part of a larger emotional support network may all contribute to the individual grieving appropriately (Meeusen-van de Kerkhof, van Bommel, van de Wouw and Maaskant 2006; Wiese, Dew, Stancliffe, Howarth and Balandin 2013).
The research on bereavement ritual participation by people with intellectual disability has revealed conflicting findings. While failure to include people with an intellectual disability in ritual has been shown to hinder grieving and increase the risk of challenging behaviour, (Bicknell 1983; Dodd, Dowling and Hollins 2005), it has also been linked to complicated grief symptoms and separation distress (Dodd et al. 2008). Both family and professional support personnel need to consider the needs and capacity of each individual, to minimise possible negative impact of bereavement while facilitating the experience of grief.
Difficulties in providing pre- and post- bereavement support
Those in the best position to assist individuals with an intellectual disability in their grieving are often family carers or the direct-care support staff within residential settings (MacHale and Carey 2002). This can, however, result in challenges for carers. To illustrate, when people with intellectual disability living in community accommodation services die, support staff have reported difficulties not only in coping with the actual death of the person, but also how to provide emotional support to those left behind (Read 1998). These carers are often left with the task of explaining the death to the remaining people with an intellectual disability, as well as then providing immediate support and comfort (Wiese, Stancliffe, Balandin, Howarth and Dew 2012). However, these staff rarely receive adequate training to do so (Ng and Li 2003; Wiese et al. 2012). Staff lack confidence in knowing the proper responses and protocols (McEvoy, Guerin, Dodd and Hillery 2010) and have little experience in assessing or identifying psychological distress (Blackman 2003). It is not surprising, then, that the process of providing support to a grieving person can be both emotionally and psychologically difficult for carers (Handley and Hutchinson 2013; Murray, McKenzie and Quigley 2000).
Where to from here?
While some individuals with an intellectual disability are well supported in bereavement, it would appear that the majority are not so lucky. The need for bereavement support by people with intellectual disability will continue to be highlighted as life expectancy increases. For the first time in history people with intellectual disability are beginning to outlive their parents (Buys et al. 2008), and they will likely experience the death of their mothers and fathers—arguably their most important loved ones. It is positive to note that training on how to support people with an intellectual disability experiencing grief following bereavement has resulted in positive outcomes (Watters, McKenzie and Wright 2011). Continued development and evaluation of training for both paid and unpaid carers is required so that individuals with intellectual disability are properly supported to both understand and process death, grief and bereavement.
Read and Elliot (2007) outlined an integrated framework for the provision of bereavement support for people with intellectual disabilities. This integrated support model, which includes individual, organisational and policy components, may be a useful way of instigating a widespread and holistic approach to bereavement support for people with an intellectual disability. Approaches such as that proposed by Read and Elliot need to be included into mainstream training options so that all carers, both paid and unpaid, are informed and confident to provide the needed support to people with an intellectual disability.