One of the most significant trends seen in recent years has been the increasing longevity of people with intellectual disability (Doody et al. 2013). Advances in medical and neonatal care, along with deinstitutionalisation, have increased life expectancy for most individuals with intellectual disability. In today’s society, individuals with intellectual disability live with family members, in special assisted-living facilities, community group-homes or on their own. Just like anyone else, people with intellectual disability have created and developed attachments to various persons, be it family members, fellow residents, staff members, co-workers, members of their communities, and other friends. With such attachments comes the experience of loss, where staff members leave, other residents relocate or die, or the death of a parent, caregiver or family member may occur. Therefore, loss and grief are a natural part life. However, individuals with intellectual disability may experience significant secondary losses: the loss of a parent or caregiver may necessitate a change in residence, with a cascade of other losses of friends, neighbours or employment. In addition, some higher functioning individuals may experience a sense of grief and loss because of their disability— a persistent sense of loss because they are perceived as different from others.
Grief reactions in people with intellectual disabilities
Since their cognitive processes are impaired, individuals with intellectual disability may have difficulty in comprehending death. However, the ability to understand death is not dependent on IQ, but rather chronological age, suggesting the critical importance of experiential learning (Fabian et al. 2011). Often the grief of individuals with intellectual disability is disenfranchised (Doka 2002; Read and Elliott 2007). Disenfranchised grief occurs when an individual experiences a loss, but that loss is not openly acknowledged, socially supported, or openly mourned. Thereby, the person experiences a loss, but has no socially sanctioned right to grieve. Disenfranchised grief may occur as caregivers may feel inadequate in addressing grief in individuals with intellectual disability and hence they ignore their needs. There may be a sense of over-protectiveness that creates a reluctance to upset individuals with intellectual disability that results in attempts to limit exposure or discussion of death, loss and grief. However, just because an individual’s grief may not be understood by others, it does not mean that the individual does not understand and experience the loss.
There is no timetable for grief, over time an individual’s painful cognitive and emotional reactions lessen and return to their former levels of functioning. In truth, for some individuals their loss can create an opportunity to learn new skills and gain insight. Individuals may experience surges of grief, especially at holiday or anniversary times or at events in which the presence of the deceased is deeply missed. There is no particular sequence or stages within the grieving process and Worden
(2008) sees grief as a series of very individual processes. What needs to be considered is that individuals with intellectual disability often have limited or distorted emotional expressions, such as giggling, when anxious—or positive bias where they report they are happy (Dodd et al. 2005). These may mask the deep feelings of anxiety, dependency, and ambivalence about that dependency, and abandonment that may be generated by the loss (Kaufman 2005).
Grief is common to all people; individuals with intellectual disability generally grieve in the same ways as others who experience a loss. However, every individual’s experience of grief is unique, based upon the characteristics of the person and the relationship to the person they have lost. Grief manifestations can be physical, cognitive, emotional, behavioural and spiritual. On a physical level, grief may be converted into physical reactions such as nausea, headaches or other bodily aches or pains. Moreover, physical symptoms result in care, concern and support from others at a painful time. Often emotional manifestations are also converted and interpreted as physical symptoms—for example, anxiety is often expressed as stomach pains. It is therefore crucial to assess physical health frequently. At an emotional level, the range of responses to loss include anger, guilt, jealousy, anxiety, sadness or regret. It is not uncommon that displaced anger is directed towards other residents or staff members, and guilt can be a common reaction due to limited understanding of causality. At a cognitive level, in the initial phases of grief shock, disbelief, and denial may occur.
Throughout the grieving process an individual’s concentration or attention span can be affected, their ability to process information less effective, and they may experience impaired judgment. Behaviours may be influenced and an individual may seem lethargic or hyperactive and sleeping or eating patterns may change. Anger, lashing out at others, or becoming withdrawn are common and they may become quite resistant to changes in routine. Resistance to changes may result in compulsive behaviours, where an individual becomes rigid in trying to maintain stability.
Acknowledgement of other mourners
In providing grief support it is important also to acknowledge other mourners; family members particularly may need support. Often, the death of an individual with intellectual disability can be disenfranchised by others, where the loss of an adult child with intellectual disability may not always be acknowledged by others (Doka 2002). Memorial services at group homes or residences and sheltered workshops can have much value, as they can bring a community of mourners together that includes family, staff, friends, fellow housemates and co-workers. Such remembrances reaffirm the affection for the deceased person and the inherent value of their life. This is particularly important when the wider community may view such a loss more ambivalently. Family members also may be invited to participate in memorials. In addition, it may be an effective means of encouraging the deceased’s fellow housemates, co-workers, and residents to acknowledge the loss through cards, drawings, or video—tributes that families can keep and treasure.
Grief support should also be extended to staff members who have created strong bonds with the individual with intellectual disability with whom they worked. The death of a client can result in a secondary loss for staff and family members, when contact is likely to cease once a resident dies. Sometimes the loss of a resident may raise concerns for staff around the ethical decisions that were made or that end-of-life care was inappropriate to the nature of the individual’s disability. If their own needs are not met with grief support, staff may not be able to continue to develop close bonds with other clients, and to support them in their loss. The result of such unrealistic expectations is that staff members are either likely to experience a sense of occupational stress or burnout, or become wary of bonding to residents as closely in the future (Papadatou 2000). Effective grief support generally involves individual strategies of self-care. These include acknowledging and validating loss, finding effective methods of respite that allow one to manage stress, and developing a personal and spiritual stance that allows a staff member to find an overarching framework for attributing meaning to life and death, as well as finding satisfaction in one’s own work (Doka 2006). However, research also has emphasised that organisations play a large role in effecting support. Effective organisations require formal policies and informal procedures that validate loss—including the time for attendance at funerals or debriefings after death. These policies/procedures create an environment where supervisors and employees can be both validating and supportive of grief. In addition, effective organisations offer both ongoing education and rituals that marked significant deaths (Gilrane-McGarry and Taggart 2007; Blackman 2008).
It is also important to acknowledge that not all losses involve death; when residents or staff members leave a service setting, this also can engender feelings of grief and they need to be marked by ritual.
Like other populations, individuals with intellectual disabilities, as they age, will inevitably have to cope with loss and grief. While one cannot protect individuals from such loss, one can prepare and support individuals and support should begin even before the illness experience or loss occurs. In supporting the person, we should provide opportunities to grieve and be carefully aware of any change in behaviour. Within the grief process we need to consider the people left behind; when a person with intellectual disability passes away this will mean providing support to family, staff, housemates, co-workers and friends.