John McEvoy on the need to prepare and support people with an ID who have been bereaved.
Dealing with the death of someone close is a difficult and painful event. For individuals with an intellectual disability, personal loss brings the same distressing emotional reactions felt by relatives and friends (Dodd and Guerin 2009; Gilrane-McGarry and Taggart 2007). However, there is a need to prepare and support people with ID who have been bereaved. Yet, until recently, we have been reluctant to discuss death and dying openly. Maybe we are afraid of losing control of our emotions when talking about a sad event, or unsure how we will manage to comfort the person if they break down in tears or become angry. Maybe we think they would not really understand death, or are somehow emotionally different from us, so there is really no point in trying to explain things to them.
Unfortunately, such attitudes simply deepen the person’s helplessness. By ‘disenfranchising’ or failing to acknowledge the individual’s loss (Doka 2002), we hinder the natural grieving process, and deprive the bereaved of support in adjusting to what is a stressful experience.
Bereavement and grief
Bereavement is a natural, but complex, process and so there are many different ways to explain it. Early views on grief focused on the painful feelings accompanying loss. Bowlby (1980) proposed that from birth we have an innate need to be close to an important ‘attachment figure’ (usually a parent), who provides security and reduces distress. When that attachment figure disappears, our secure base is gone—resulting in an increase in distress. Bowlby (1980) saw this distress as a universal reaction to separation. Death represents an extreme form of separation from an attachment figure. This separation triggers shock, yearning, protests, searching for the lost attachment figure. Then, following a period of confusion, we accept the loss as irreversible and recover—developing new ways of dealing with our ‘changed reality’ (Bowlby 1980). Healthy mourning is thus an acceptance that a change has occurred in our external world and we now must think differently about our relationship to the deceased.
According to Freud (1957), the ‘goal of mourning’ is having recognised the finality of the relationship, to disengage from the deceased and ‘move on’ with our lives. Later theorists suggest that grief comprises a series of emotional stages or tasks which one must work through in order to fully adjust to loss (Kubler-Ross 1969; Worden 2003). However, recent research suggests that such descriptions of grief do not accurately reflect the intensity of people’s mixed emotions. Modern explanations acknowledge that there are wide variations in our responses and adaptation to loss (Wortman and Silver 1993). Grief is idiosyncratic and bereaved people vary greatly in the way they interpret and attach meaning to the death of a loved one (Neimeyer 2004). No less is true of people with ID. In grief, we jump from coping to not coping, from clear memories of the deceased to worries about the future (Stroebe and Schutt 1999). Grief disturbs our sense of time. We may also lose some of our abilities. Also, it is quite normal for newly bereaved individuals to look for the dead person or to think that they have seen or heard them (Neimeyer 2004). But is depression not a necessary part in completing the grief process, nor is the absence of extreme sadness an indicator of a failure to grieve (Wortman and Silver 1993). There is now overwhelming evidence that people with intellectual disabilities have similar grief experiences and expressed their grief as unique individuals (Dodd et al. 2005; Dodd and Guerin 2009).
Bereavement, stress and attachment
When someone dies there are many important tasks to be undertaken. For example, we have to talk about the loss, tell others, organise the funeral. At the same time, one is trying to come to a realisation of the loss, to reorganise one’s life in a new world without the presence of the deceased, but with close bonds and memories of the deceased remaining. Thus, grief can be viewed as an interaction between coping with the stress of the death event and coming to terms with our relationship with the deceased (Stroebe and Schutt 1999). We know that people with intellectual disabilities are susceptible to the same grief reactions as other people (Harper and Wadsworth 1993). However, for them, grief brings unique challenges. In supporting bereaved individuals our focus, therefore, is on minimising the stress associated with the emotional and practical fallout from the death and on helping them to come to terms with a changed reality: their physical separation from the deceased.
Plan ahead—Planning ahead helps to eliminate possible stressors during times of bereavement. Services, staff and family carers should try to have a plan of action in the event of a death. Preparation for loss should not be left until the relative becomes ill and dies. The importance of discussing matters well in advance cannot be overemphasised. This includes considering how the individual will be involved before, during and after the death, and talking to the person about where they would like to live, well before a bereavement occurs. Offering experiences away from the family home while parents are alive and able to support them in making new relationships can be invaluable.
Support understanding—Preparation for loss inevitably raises the question of how much a person with intellectual disabilities understands about death, its finality and its consequences. Having a concrete understanding of what it means to die is helpful in coming to terms with loss. For example, if one does not fully grasp the concept of death, one can remain believing that the death is just temporary and that the deceased will return. For some, comprehension is very limited; others have only a partial understanding which leaves them vulnerable to confusion and incorrect thoughts (McEvoy et al. 2012). Therefore, preparation around ageing, dying and death should be included in all social relationship programmes. Utilise everyday situations or examples from films or the TV soaps to share and discuss death, illness and the associated emotions. The use of educational training and health promotion packages also assist in greater understanding. Traditionally, people with intellectual disabilities have not been encouraged to express their feelings. Therefore considerable work on labelling and recognising emotions may be required, alongside ways to develop and express feelings in an appropriate manner.
Keep the person informed—Explaining loss is difficult and complex. Many people with intellectual disabilities present with significant communication difficulties which can be a real challenge. Facts about illness and death should be sensitively communicated and individuals kept up to date and told the truth about their dying relative. When imparting sad news, break the information down into understandable chunks. Talk about what’s happening in the present. Allow the person to gradually build up their understanding over time. The death of someone close is a changed reality. Helping the person to cope with this changed reality will take considerable time and much patience and reassurance (Tuffery-Wijne 2013). Use clear and precise language to minimise confusion and avoid using euphemisms such as ‘with the angels’. Even if you suspect the person does not fully comprehend, you should nonetheless pay them the respect of speaking accurately and truthfully. It is important that the loss is faced head-on and the deceased is mourned and affectionately remembered. The complexity of cognitive ability, attention span and limited emotional vocabulary often presented by people with intellectual disabilities may mean they can only deal with their loss in short sessions.
Carefully observe grief responses and emotional reactions—Even though some individuals may have difficulty in understanding the concept of death, they will still miss people and show the full range of grief reactions (Harper and Wadsworth 1993; McEvoy et al. 2002). Normal grief reactions range from physical symptoms, feeling depressed, loss of skills, yearning for the deceased, anger and guilt. However, recognising and describing the grief reactions of people with intellectual disabilities can be difficult and often normal grief indicators are overlooked or may be misinterpreted as difficult behaviour (Dodd et al. 2008; Hollins and Esterhuyzen 1997; MacHale et al. 2009). Equally, the absence of grief symptoms can be a cause for concern and incorrectly interpreted as abnormal. Acceptance that the deceased will not be coming back may take considerable time and reactions may be delayed and some individuals may hide their grief so as not to appear burdensome. For some individuals with ID, coping with death may present considerable behavioural and mental health challenges. These include symptoms associated with complicated grief, such as yearning and searching for the deceased, and preoccupation with memories and thoughts of the deceased, (Hollins and Esterhuyzen 1997; Dodd et al. 2008).
Support inclusion in funerals and rituals—Some individuals may not have been given the opportunity to participate in rites of passage. It is most important that people are given the choice about attending funerals and about whether they stay at home while a parent is dying. Individuals may need much sensitive and guided preparation if they are to attend the funeral (Gilrane-McGarry and Taggart 2007; McEvoy et al. 2012).
Sensitively support lifestyle changes—In supporting the bereaved through lifestyle change, special attention may need to be given to residential placement. Moving home is a stressful experience. One might consider not moving an individual into residential care immediately after a parental death, but rather to have someone stay with them in their own home for a few weeks, if possible. Often people go through an emergency or temporary placement before taking up their permanent residence. Too many moves seriously hinders the mourning process. Also, if it is the individual’s first experience of residential care they may not understand why they are there, and may find it very difficult to form relationships with staff and fellow residents, contributing further to their sadness and grieving. Where the bereavement results in the person losing their home, they should have a full explanation about what has happened to the home. Also, the location of the new home is crucial; it is important that people are placed near their local neighbourhood so that they do not lose contact with family and neighbours. Similarly, allowing residents time to mourn following the death of a fellow resident is necessary before filling a residential vacancy.
Support families and carers—Sometimes families can become somewhat isolated and lonely following a bereavement, particularly if the deceased has been the main focus of the family’s social network. Therefore it is important to keep in touch. Also, there can be a significant care burden left with a remaining parent, if the deceased had been the main carer. Services may need to be more proactive in supporting frontline staff through policy and training initiatives and to acknowledge the emotional impact of bereavement on organisational and family systems (McEvoy et al. 2010).
Look for opportunities for growth and development—Many individuals are very involved in their home life and are of great assistance to their parents. When the parent, dies their feelings of being useful and wanted often go unrecognised and they are not given other responsibilities to take their place. Sometimes people with intellectual disabilities have not shown a loss of confidence after a bereavement, but have actually become far more independent or have supported their single parent by taking more responsibility. Many people with intellectual disabilities have a variety of gifts and life experiences which provide a foundation for coping with bereavement. The challenge for services, professionals and carers is to release this potential through positive approaches which develop a balance of physical, mental and social well-being.
Providing support to the bereaved is not easy and the development of interventions for persons with ID is still in its infancy. Despite our relatively limited knowledge in this area, our main concern is (a) to ensure that we relieve the stress of the death event, and (b) to focus on the relational-attachment to the deceased.
Have a plan of action ready well in advance of an individual becoming bereaved.
■ Support a full understanding of the life-cycle, death, rites of passage and expressions of grief.
■ Respect the right of the bereaved person with ID to be told the truth and to grieve.
■ Acknowledge that normal grief reactions are unique to each individual.
■ Remain vigilant for any behaviours indicative of grief complications, and seek help.
■ Ensure continuity of staff, activities and locations. Immediate removal to unfamiliar residential facilities or multiple residential care placements should be avoided.
■ Focus on supporting families, rebuilding relationships and developing social networks following loss.